Miss-Delectable
New Member
- Joined
- Apr 18, 2004
- Messages
- 17,160
- Reaction score
- 7
http://allafrica.com/stories/200512120609.html
EVER wondered how it feels when you want to share your problem and you can't? You have people around you who are willing to listen but you simply cannot talk? Not that you have no voice but because you are deaf and dumb?
This is what 32- year-old Susan Mshoka of Petauke district felt when she discovered that she was HIV positive.
Frustrated, annoyed, isolated and lonely.
Mshoka, who is deaf and dumb, says it is difficult for deaf people to go for HIV tests due to lack of confidentiality. This is so because they have to go with sign language interpreters.
Mshoka is the first deaf person to come out in the open about her HIV positive status. She says she has been living with the virus that causes AIDS for the past four years.
"It is difficult to go for testing because there is no confidentiality. One has to go with an interpreter and that interpreter gets to know the deaf person's status even before he or she knows. This discourages deaf people to go there," she says.
Mshoka says revealing one's status is not easy and requires a lot of comfort from family and friends.
"The disease is not like malaria," she says.
Mshoka adds that there is need for counsellors to be trained in sign language so that many deaf people can be encouraged to undergo counselling and testing and consequently know their status.
She says if there was chance to train deaf people as counsellors, it would be a good step in the right direction.
Mshoka says confidentiality is important in HIV testing. She explains that the lack of it or the absence of a guarantee becomes a barrier for the deaf.
She says there are many deaf HIV infected persons but cannot come out in the open for fear of further discrimination and stigma.
Mshoka who is also Zambia National Association for the Deaf Women's chairperson says nothing much has been done by government to ensure that the deaf have adequate information on a number of issues that are going on in the country.
"There is no HIV/AIDS interpretation using sign language," she says.
Mshoka observes that organisations are also not doing enough to ensure that disabled particularly the deaf are well equipped with information on HIV/AIDS and how to access ARVs," she complains.
She says she is trying to advocate for support to help persons that are deaf and living positively.
She also says that she has been working with first Republican
president Dr Kenneth Kaunda to look at support for the deaf.
However, she says no assistance has been received todate despite many people having promised to help.
Mshoka has also written a project proposal to the Maureen Mwanawasa Community Initiative (MMCI) hoping to seek support from the first lady.
"There are many deaf people with HIV/AIDS and they don't know where to get information especially on the CD4 Count. Many of them have died due to lack of information, these lives could have been saved," Mshoka says.
She says the deaf are a special case that need special attention before they die prematurely because their lives could be prolonged with the ARVs.
She says her organisation cannot not do much because it is financially handicapped.
And narrating how she found herself in the predicament, Mshoka says her first husband died in 1998. He left her with a four-year-old son and a nine month-pregnancy.
She says her son is now 11 yeas old and doing Grade five while the second born is 8 years old and both children stay with her parents in the village because she cannot afford to look after them.
"My children are both HIV negative. My first husband didn't leave me with HIV when he died," she explains.
She says she became HIV positive after she re-married.
"I divorced my second husband who is also deaf in 2002. When I married him I didn't know his HIV status. I started having headaches, malaria and I had tonsils before deciding to go to the hospital," she narrates.
After an operation on the right side of her jaw due to the tonsils, Mshoka was compelled to go for voluntary counselling and testing following a doctor's advice.
"The doctor didn't clearly explain what was wrong with me but told me that I could either have HIV or syphilis," she says.
Mshoka says when she informed her husband that he had to accompany her to the hospital; he refused to go for medical check up.
She explains that it was only after persuasion that he went with her.
"He decided to go to Kara Counselling after I started showing symptoms and lost weight and after counselling we were told that we are HIV positive," Mshoka says.
"I was very sad. I felt frustrated, disturbed and thought that was the end of me. I nearly collapsed and died but the sign language interpreter helped me and comforted me."
She explains that she went back to Kara Counselling after two weeks and was advised to live positively and to eat nutritious food.
Mshoka says Winston Zulu, one of the first Zambians to go public about his HIV status and has been living positively for over 10 years, also helped her to come to terms with her condition.
"When I first had my CD4 count (in June 2004) it was 122. I started ARVs and 8 months later it was 450, six months later it was 600. I also gained weight from 48kgs to 69.5 kgs currently. I also exercise a lot and abstain as the doctor advised me," she says.
Mshoka says ever since she told her parents about her HIV status they have been very helpful and encouraging.
"There is need to be faithful to God. I pray five times a day so that God can comfort and help me," she says.
Mshoka further says people refuse when she tells them that she is
HIV positive.
She says Jesus is the only way and that God is the most high.
Mshoka says it is important for everyone to know his or her health status whether married or single.
She says she wants to get married one day when she meets an HIV positive Mr Right who is God-fearing and have more children.
Mshoka adds that it is difficult to say that a marriage that has one spouse HIV negative and another positive would really work out.
"But there is no peace in a home when one is HIV positive. When both are positive or negative then there will be happiness. I abstain because I don't want to re-infect myself if I indulge in sexual activities. If God opens a way I would rather marry an HIV positive man because I don't want to infect the HIV free man," she notes.
But Mshoka also says it is difficult to abstain for a long time hence the need to re-marry.
"It's God that made sex and no one should say that one has to completely stop. HIV positive people also have feelings like any other person. It's important for people to have sex in life hence if anyone wants to marry me he should be positive because condoms are not 100 per cent safe," she says.
She says when people become positive, it's not that they should abstain but they should have sex once in a while.
Mshoka emphasises that HIV positive people could still have children adding that she has met many HIV positive people that have had HIV negative children.
And deaf Christian Church of Christ senior pastor Lewis Nkhoma, who expressed the same sentiments on the plight of the deaf in the country, says deaf people are lagging behind in many developmental issues due to high illiteracy levels.
Pastor Nkhoma says illiteracy has been a barrier especially on HIV sensitisation.
"Very few deaf people are aware about the word of God and have information about HIV and ARVs. Illiteracy is the barrier we are facing because most of them don't know how to read and no sign languages," he says.
With four branches in the country, his church hopes to reach out to many deaf people so that they can be educated.
Pastor Nkhoma says lack of funding is a big problem and that the church depends on the word of God.
He says his church wants to see possibilities of how it could work with National AIDS Council (NAC) to ensure that the deaf people are well equipped.
"We want to have a sensitisation workshop on HIV and want to use more of ZNBC as a channel of information since most deaf would be able to see the sign language interpreter," he says.
Pastor Nkhoma also says most deaf people have been left out of the voting exercise, as they do not have national registration cards and sign language to help them.
"We are encouraging them to vote. We have seen that much more needs to be done as there is lack of support," he says.
Meanwhile, Association of Sign Language Interpreters of Zambia (ASLIZ) chairperson Chipampe Ngulimba says her organisation is sourcing for funds to help enroll deaf people to be enrolled in school.
"We will collect deaf children that have been hidden from the society and orphans and vulnerable children (OVCs)," Ngulimba says. Ngulimba says ASLIZ is concerned with the development of the deaf and their contribution to the country.
EVER wondered how it feels when you want to share your problem and you can't? You have people around you who are willing to listen but you simply cannot talk? Not that you have no voice but because you are deaf and dumb?
This is what 32- year-old Susan Mshoka of Petauke district felt when she discovered that she was HIV positive.
Frustrated, annoyed, isolated and lonely.
Mshoka, who is deaf and dumb, says it is difficult for deaf people to go for HIV tests due to lack of confidentiality. This is so because they have to go with sign language interpreters.
Mshoka is the first deaf person to come out in the open about her HIV positive status. She says she has been living with the virus that causes AIDS for the past four years.
"It is difficult to go for testing because there is no confidentiality. One has to go with an interpreter and that interpreter gets to know the deaf person's status even before he or she knows. This discourages deaf people to go there," she says.
Mshoka says revealing one's status is not easy and requires a lot of comfort from family and friends.
"The disease is not like malaria," she says.
Mshoka adds that there is need for counsellors to be trained in sign language so that many deaf people can be encouraged to undergo counselling and testing and consequently know their status.
She says if there was chance to train deaf people as counsellors, it would be a good step in the right direction.
Mshoka says confidentiality is important in HIV testing. She explains that the lack of it or the absence of a guarantee becomes a barrier for the deaf.
She says there are many deaf HIV infected persons but cannot come out in the open for fear of further discrimination and stigma.
Mshoka who is also Zambia National Association for the Deaf Women's chairperson says nothing much has been done by government to ensure that the deaf have adequate information on a number of issues that are going on in the country.
"There is no HIV/AIDS interpretation using sign language," she says.
Mshoka observes that organisations are also not doing enough to ensure that disabled particularly the deaf are well equipped with information on HIV/AIDS and how to access ARVs," she complains.
She says she is trying to advocate for support to help persons that are deaf and living positively.
She also says that she has been working with first Republican
president Dr Kenneth Kaunda to look at support for the deaf.
However, she says no assistance has been received todate despite many people having promised to help.
Mshoka has also written a project proposal to the Maureen Mwanawasa Community Initiative (MMCI) hoping to seek support from the first lady.
"There are many deaf people with HIV/AIDS and they don't know where to get information especially on the CD4 Count. Many of them have died due to lack of information, these lives could have been saved," Mshoka says.
She says the deaf are a special case that need special attention before they die prematurely because their lives could be prolonged with the ARVs.
She says her organisation cannot not do much because it is financially handicapped.
And narrating how she found herself in the predicament, Mshoka says her first husband died in 1998. He left her with a four-year-old son and a nine month-pregnancy.
She says her son is now 11 yeas old and doing Grade five while the second born is 8 years old and both children stay with her parents in the village because she cannot afford to look after them.
"My children are both HIV negative. My first husband didn't leave me with HIV when he died," she explains.
She says she became HIV positive after she re-married.
"I divorced my second husband who is also deaf in 2002. When I married him I didn't know his HIV status. I started having headaches, malaria and I had tonsils before deciding to go to the hospital," she narrates.
After an operation on the right side of her jaw due to the tonsils, Mshoka was compelled to go for voluntary counselling and testing following a doctor's advice.
"The doctor didn't clearly explain what was wrong with me but told me that I could either have HIV or syphilis," she says.
Mshoka says when she informed her husband that he had to accompany her to the hospital; he refused to go for medical check up.
She explains that it was only after persuasion that he went with her.
"He decided to go to Kara Counselling after I started showing symptoms and lost weight and after counselling we were told that we are HIV positive," Mshoka says.
"I was very sad. I felt frustrated, disturbed and thought that was the end of me. I nearly collapsed and died but the sign language interpreter helped me and comforted me."
She explains that she went back to Kara Counselling after two weeks and was advised to live positively and to eat nutritious food.
Mshoka says Winston Zulu, one of the first Zambians to go public about his HIV status and has been living positively for over 10 years, also helped her to come to terms with her condition.
"When I first had my CD4 count (in June 2004) it was 122. I started ARVs and 8 months later it was 450, six months later it was 600. I also gained weight from 48kgs to 69.5 kgs currently. I also exercise a lot and abstain as the doctor advised me," she says.
Mshoka says ever since she told her parents about her HIV status they have been very helpful and encouraging.
"There is need to be faithful to God. I pray five times a day so that God can comfort and help me," she says.
Mshoka further says people refuse when she tells them that she is
HIV positive.
She says Jesus is the only way and that God is the most high.
Mshoka says it is important for everyone to know his or her health status whether married or single.
She says she wants to get married one day when she meets an HIV positive Mr Right who is God-fearing and have more children.
Mshoka adds that it is difficult to say that a marriage that has one spouse HIV negative and another positive would really work out.
"But there is no peace in a home when one is HIV positive. When both are positive or negative then there will be happiness. I abstain because I don't want to re-infect myself if I indulge in sexual activities. If God opens a way I would rather marry an HIV positive man because I don't want to infect the HIV free man," she notes.
But Mshoka also says it is difficult to abstain for a long time hence the need to re-marry.
"It's God that made sex and no one should say that one has to completely stop. HIV positive people also have feelings like any other person. It's important for people to have sex in life hence if anyone wants to marry me he should be positive because condoms are not 100 per cent safe," she says.
She says when people become positive, it's not that they should abstain but they should have sex once in a while.
Mshoka emphasises that HIV positive people could still have children adding that she has met many HIV positive people that have had HIV negative children.
And deaf Christian Church of Christ senior pastor Lewis Nkhoma, who expressed the same sentiments on the plight of the deaf in the country, says deaf people are lagging behind in many developmental issues due to high illiteracy levels.
Pastor Nkhoma says illiteracy has been a barrier especially on HIV sensitisation.
"Very few deaf people are aware about the word of God and have information about HIV and ARVs. Illiteracy is the barrier we are facing because most of them don't know how to read and no sign languages," he says.
With four branches in the country, his church hopes to reach out to many deaf people so that they can be educated.
Pastor Nkhoma says lack of funding is a big problem and that the church depends on the word of God.
He says his church wants to see possibilities of how it could work with National AIDS Council (NAC) to ensure that the deaf people are well equipped.
"We want to have a sensitisation workshop on HIV and want to use more of ZNBC as a channel of information since most deaf would be able to see the sign language interpreter," he says.
Pastor Nkhoma also says most deaf people have been left out of the voting exercise, as they do not have national registration cards and sign language to help them.
"We are encouraging them to vote. We have seen that much more needs to be done as there is lack of support," he says.
Meanwhile, Association of Sign Language Interpreters of Zambia (ASLIZ) chairperson Chipampe Ngulimba says her organisation is sourcing for funds to help enroll deaf people to be enrolled in school.
"We will collect deaf children that have been hidden from the society and orphans and vulnerable children (OVCs)," Ngulimba says. Ngulimba says ASLIZ is concerned with the development of the deaf and their contribution to the country.