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Siyayinqoba Beat It! 2005 Episode 21 –

Living with a disability & HIV

Many people living with HIV/AIDS are also living with different kinds of disabilities. Does HIV/AIDS awareness and education reach people with disabilities? Are our healthcare services sensitive to the needs of people with disabilities? Through the experiences of John Meletse of the Gay and Lesbian Archives (GALA), Buyile Vava and other members of Disabled People of South Africa (DPSA) and parliamentarian, Hendrietta Bogopane-Zulu, the Siyayinqoba support group shared ideas on what can be done to help people cope more easily with living with disability and the challenges of the HIV/AIDS epidemic.

Jason Wessenaar: Hello and welcome to the Siyayinqoba Beat It! Support group. My name is Jason. In the Siyayinqoba Support Group we are all living positively with HIV. Each week we get together to talk about issues that affect our lives with HIV from gender-based violence to healthy eating for the positive person. Siyayinqoba is your guide to better living with HIV. If you are living with HIV or have a partner, a family member or a friend who is HIV positive, Siyayinqoba is for you. Have you ever imagined what your life would be like if you couldn’t see, hear or speak? How would you access information? Siyayinqoba’s primary aim is to create awareness and to share information on HIV/AIDS. What about people living with disabilities? This week we are talking about living with both the disability and HIV. What are the challenges in learning about safer sex, treatment and positive living? Our youth guest today is Buyile, welcome Buyile. But first, let’s see what the Beat It! team found out when they spoke to John Meletse. John is living with both HIV and a disability.

HIV testing does not cater for deaf people

White City, Gauteng

John Meletse: {Sesotho} My name is John Meletse and I work at GALA. I work with people who are deaf, gays and lesbians and I also focus on deaf people living with HIV. It was extremely depressing when I went for my HIV test. I was given no counselling, no information, I wasn’t comfortable at all and that was awful. After the test I waited 15 minutes for my results. I waited around then I was called in by the doctor and he sat me down. He didn’t even try to encourage me or explain anything to me. You know how cruel they were? He wrote in bold letters on a piece of paper: YOU ARE HIV POSITIVE, and just shoved it in my face. I have to be a role model and I have to show people. It’s the best way, acting as a role model. There are no SA language interpretation services for us. The clinic couldn’t give me any information about a support group. I didn’t know about the CD4 cell count, I didn’t know about the viral load, I knew nothing. I think only last year, here at the GALA, we started a support group for gay and lesbian deaf people. And I’ve had to disclose to my community to serve as a role model. The biggest problem is within the clinics in South Africa. When deaf people go test to see if they’re HIV positive or not, they are patronised by nurses in those clinics. When these tests are conducted, there is no SA sign language interpreting available for them. There’s no counselling done with deaf people when they do their tests. They warn hearing people: be careful of HIV, this and that. Deaf people don’t have access to that information.

Support Group

Jason Wessenaar: Buyile, you just saw that John had challenges with regard to accessing information and counselling when he went for his test because he’s deaf and obviously there were no services for him. What are the challenges that people with disabilities face especially from the side of the DPSA?

Buyile Vava (Disabled People of South Africa, DPSA): Le-problem yakhe yi-problem exhaphakileyo, de kuthi kwiikliniki zethu pha ekuhlaleni. If uya ekliniki uyela mhlawumbi ufuna ukuqonda i-information about HIV or anything related to sexual activities, they can’t believe into yoba u-engaged na kule-process yothandana. {IsiXhosa} [John’s problem is a very common one in clinics in our communities. When a person with disabilities goes to a clinic to get information about HIV or anything related to sexual activities, because they can’t believe that deaf people engage in sex.]

Vuyani Jacobs: When you reach these places with condoms, it’s a bit high or you are in a wheelchair, now you have to ask someone else and I would look at you and I’ll think: “Gee, you really do it.”

Buyile Vava: Into ebangela lanto yoba babe bona ba-reacta ngolahlobo ba-shocked, abana-understanding yomntu o-disabled. [The reason why people react like that is because they are shocked. They don’t understand people with disabilities.] Bamthatha [They treat people with disabilities] as if they are foreign, because if bebemtreata as umntu ophakathi kwabo [people with disabilities were treated like everyone else] they would be spoken to properly when they are approached. {IsiXhosa}

Lihle Dlamini: Uqinisile {IsiZulu} [You are right] because we are sure that izinto eziningi like i-material yakwa-treatment literacy ibhalwe nge-English, [the treatment literacy material is translated from English to other languages.] But why don’t siyenze ibeyi-Braille, sibenama-audio tapes ukuze nabantu abangaboni bawezwe kube ne-sign language. [we have it in Braille or on audio tapes for blind and deaf people can have sign interpreters.] Sifunde ngezandla, sikwazi ukuthi sifunda ne-Braille nakhona umuntu ongaboni. [to learn sign language and how to read Braille. Njeng’ba kade usisho ukuthi kusasa ngingaba kwi-car accident.

[Because tomorrow I may be involved in a car accident and end up blind.

Busisiwe Maqungo: Ingxaki iqale pha phezulu because if babe-understande kwasekuqaleni ukuba nabo abantu abane-disabilities bayi-part ye-community, xa be-visit i-public services funeka nabo be-caterishelwe. [I think the problem starts with the authorities because if they acknowledge that people with disabilities are part of the community, when they use public service facilities, they should be catered for.]

Buyile Vava: Zonke ezindawo zempilo, indlela ezi-communiacate ngayo i-service yabo ayifikeleli kwi-maximum standard, sinezinto esizifunayo [The service provided by health facilities is not good enough,] especially for us people with disabilities. And I think indlela ezobabhetele ezofuneka senze ngayo [the best way to solve these problems,] kofuneka i-HIV/AIDS ne-disability awareness zibanjwe [is to highlight both HIV/AIDS and disability awareness.]

Jason Wessenaar: I counselled John just after he got his results and I felt challenged that I had to counsel him when somebody else was signing to him, which was making it difficult because of the confidentiality issues that we had to discuss. And I had to speak to him and then this person signs, then he signs back and that took longer than it usually would when you’re doing counselling so I felt challenged to learn sign language.

Ricardo Moses: I once had an experience at a clinic but I myself didn’t know that this person is blind and this person asked me: “How will I know how to use a condom?” It was a shock and I thought: “You’re a big person, you’re an adult, why don’t you know how to use a condom?” On a later stage, when the doctor called this person, then I saw somebody helping him and I realised this person is blind. And we don’t have material out there to give to people with blindness so really, it’s a very big challenge.

Prudence Mabele: {Sesotho} There are women with disabilities in our support group who are facing challenges. One woman’s partner tries not to use a condom so she has to use her sense of touch to make sure that the condom is there. It’s not health care workers who have attitude towards disabled people but it’s the partners and communities. We have to work together and make them part of our communities, we shouldn’t leave the responsibility to the clinics.

Anthony Fernandes: I grew up in a town where there was lots of hearing impaired and visually challenged people, Worcester is known for it’s deaf and blind schools. From a very young age you are taught never to look at them differently and act like there’s something strange because there isn’t really, they have a disability, they cope with it and they learn how to live with it. So to even give them special treatment or glances or looks is kind of rude and you never assume they need help unless they speak out for it. So I always find it a little bit offensive too when people start talking down on or in a child-like manner or thinking that they are mentally challenged, when they are not. And as teenagers growing up with deaf and blind kids, we learned that they’re sexual beings just like us.

Jason Wessenaar: Hendrietta Bogopane-Zulu, a Member of Parliament talks to us about HIV and disabilities after this short break. Don’t go away.

Jason Wessenaar: {Sesotho} Welcome back to the Siyayinqoba Support Group – the programme for everyone infected and affected by HIV. We also welcome Hendrietta Bogopane-Zulu, a Member of Parliament. Hendrietta is joining us to talk to us about disabilities and HIV, welcome Hendrietta. But first, let’s see what we found out when we met a group from Disabled People of South Africa in Nelspruit.

How people with disabilities cope with HIV

Nelspruit, Mpumalanga

DPSA Chairperson: La sikwa-Nyamazana eofisini le-DPSA. So u-DPSA unenkinga ahlangana nazo mangelana nabantu abakhubazekile nge-HIV. Manje mina as u-Dr Mayisela, i-chairperson ye-DPSA ngifuna ukuthi sibonisane ukuthi singazicazulula kanjani le nkinga ngoba kunezinto esifuna ukuzenza asikhoni ukuzithola. {IsiZulu} [We are at Ka-Nyamazane at the offices of Disabled People of South Africa. As DPSA we encountered a few problems regarding people with disabilities and HIV. As a chairperson of DPSA I want us to help each other on how we can solve these problems. Because we would like to do certain things but we are unable to do them.]

Lady Speaker 1: Engikubonile ukuthi isizathu ukuthi ma uhamba la ngaphandle kunomuntu ongaboni kunomuntu o-deaf, umchazela njani wena nge-AIDS? Ongaboni umkhomba njani i-condom ifanek’umkhombise i-condom ngoba akaboni, lezinto azikho kwi-Braille. Kunabantu abanama-disabilities ahlukile, kukhona abanama-intellectual disabilities, kukhona abanama-quadriplegics, uyisebenzisa kanjani i-condom ngoba iizandla zakhe azisebenzi. Zizinto ekufanele sizibuke. {IsiZulu} [I’ve noticed that with deaf and blind people, how does one explain to them about HIV/AIDS? How do you teach a blind person to put on a condom? That information is not available on Braille. There are people with different disabilities. Some people have intellectual disabilities and others are quadriplegics. How do you put on a condom when you can’t use your hands? These are the issues we need to look at.]

Lady Speaker 2: Mina isicelo sam, umbono wam ukuthi maybe singashumana ne-department of health ukuthi isi-include kuma-programmes onke bawa-implement emphakathini. Emphakathini uma benza lama-programmes aba-include. {IsiZulu} [I think we need to meet with the Department of Health so that they can include us in all the programmes they implement especially in the communities. Because when they implement these programmes they don’t include] people with disabilities.

Male Speaker 1: Ama-deaf people i-information abayitholi, la bantu batestayo laphaya abayazi i-sign language. Wonke abantu abasebenzayo pha bafunde i-sign language. Kulapho bazo-communicate nabantu aba-deaf. {IsiZulu} [Deaf people don’t get the information and the healthcare workers don’t know how to communicate in sign language. I think people who work in those places should learn sign language.]

DPSA Chairperson: In that way they will be able to communicate with deaf people. Kungani abantu abakhubazekile sithi abekho aba-HIV positive? {IsiZulu} [Why do people say there are no HIV positive people with disabilities?]

Lady Speaker 1: Mina angivumi ukuthi abekho abantu abakhubazekile aba-HIV positive, bakhona sithi esingabazi. Okunye okwenza ukuthi singabazi, kwabona abazi ukuthi ba-HIV positive ngoba abakay’otesta. Abanye abayazi ukuthi fanele bayotesta, yini i-HIV/AIDS ngoba ayikho i-information, akukho lapho bathola khona ukuthi i-HIV/AIDS yilokhu nalokhu, abazi. {IsiZulu} [I don’t agree that there are no HIV positive people with disabilities. They are there, we just don’t know about them. Some of them don’t even know that they are HIV positive because they haven’t tested, they don’t know what HIV/AIDS is. Because there is no information and that’s why they don’t know how to find out more about HIV/AIDS.]

Male Speaker 1: Aba-deaf abafundanga abayanga es’kolweni, i-sign language abayazi. Bahlala ekhaya bayavalelwa, uthole ukuthi abanye abantwana bakubo bayaphuma baya ngaphandle but yena bayamvalela ekhaya bam-protect kakhulu. {IsiZulu} [Many deaf people are not literate and don’t know how to communicate sign language. Some stay at home, where they are isolated. You find that other family members are given freedom to go outside but the deaf person will be kept indoors as a way of protecting them.]

Lady Speaker 1: Thina sichazile ukuthi asibazi abantu abakhubazekile abakhona aba-HIV positive ne, manje thina uma singasukuma kuqala siyotesta besesiyavela, besengiyahamba mina njengomntu okhubazekile nam ngi-HIV positive. Nabo bazovela. {IsiZulu} [That’s one of the challenges we are faced with. It was mentioned that we don’t know of people with abilities who are HIV positive. We have to get up first and get tested and after that come forward. If we disclose and say we are HIV positive then other HIV positive people with disabilities will also disclose.]

DPSA Chairperson: Yiyona nto engibona ukuthi kwanamuhla singavala ngayo ukuthi akhe sihambeni siyozitesta, ama-result thina singawafihli siwaveze njengabantu abaphambili. {IsiZulu} [That’s a statement we can close the meeting with because we have to go and get tested. We must not hide our results, let’s disclose them, to lead by example.]

Support Group

Jason Wessenaar: Hendrietta, we’ve been talking about disabilities and HIV and issues around communication, the barriers in communication and accessing information, what have your own experiences been of accessing information.

Hendrietta Bogopane Zulu (Visually impaired MP): {Sesotho} [I was lucky because I was involved with all the types of disability programmes. It’s easy to talk about people who are deaf and blind because we can see them. But there are people with mental disabilities and they also have sex like everybody else. There are autistic people, others have Down syndrome, others are deaf and blind at the same time and they all have sex. We need to know what we mean when we talk about HIV and disability. Everyone should use a condom but it must be used correctly. That is the use, use it correctly.]

Jason Wessenaar: {Sesotho} Most communities are selfish and may think that it takes too much work to look for deaf people and still find an interpreter. I think the problem is that we don’t think about other people.

Buyile Vava: Siye kula-episode besiyijonge kuqala ne-attitude yoo-nurse kwi-hospitals [Referring to the first insert: about the attitude of the nurses in our hospitals,] it’s adding more to what you are talking about. And out of that, people with disabilities are not exposed in such things because they lose faith, ngulowo nalowo ozixelelayo [it’s only a few who take interest in learning about HIV.] {IsiXhosa}

Busisiwe Maqungo: Kulanto ba sisithi abantu abane-disabilities baye balibaleke ixesha elide, umbuzo wam wokuqala, ikhona into ngokwazi kwakho njengelungu lopalamente, ikhona na into eyenziwayo and ihamba nge-pace engakanani. {IsiXhosa} [We think that disabled people are being ignored in most cases. Firstly, as a Member of Parliament, are you doing something and at what pace] because I think we are very late?

Hendrietta Bogopane-Zulu (Visually impaired MP): Ngaphandle kokuba yi-member yepalamente I’m also i-member ye-South African National Council, ngi-represent i-disability sector {IsiXhosa} [Apart from being a Member of Parliament, I’m also a member of the SA National AIDS Council. I represent the disability sector] and a lot has been done, the only sad part is that anything that has to do with disability doesn’t get media attention, anything about disability doesn’t make news. But if it was making news, we woiuld be knowing that the sector itself is very mobilised, it’s very strong. We sped up the pace in 1998 when we began to also say: “My country, we’re getting into a partnership” and we said: “We are also partners.” So we are also partners in the implementation of HIV/AIDS programmes in South Africa.

Jason Wessenaar: After the break, we learn more about living with disabilities and HIV. Don’t change that dial.

Jason Wessenaar: Welcome back to the Siyayinqoba Support Group. We are talking about HIV and disability.

Vuyani Jacobs: There’s a lot of money used on HIV, too much money and I think some of the budget must include budgeting for disabled programmes like the treatment literacy that is happening all over, nobody budgets for disabled communities. And I think we need to include them because they are part of our society, we don’t need to isolate them all the time. I don’t say that they cannot group themselves and mobilised accordingly because I think as a mobilised community, it’s easier to get involved and get them into it. Because we only get them in marches, when there’s a huge march, we get people with wheelchairs in the front and then we toyi-toyi at the back. After the march they go back to their disabled communities and they are not part of the programmes.

Buyile Vava: The march is for that one day and it is for the front page of what we’re all doing. At the back of what we’re doing, you can’t find us, that’s the thing. And the support groups in our township, you can’t see a disabled person there, why is there no disabled person there? Therefore both parties; the temporarily able person and the disabled people must try and organise to be together because both of them need awareness.

Busisiwe Maqungo: At the end of the show, Jason always says there’s a number below that you can contact and you can’t even see the number, would you prefer Jason read the number, just call 021 788 9163 or write to info@beatit.co.za instead of just assuming that everybody is going to see the number on the screen.

Hendrietta Bogopane-Zulu: I would call it a television language, they just like see the number on anything, whether it’s on anything. Because the assumption is that people can see or people can read and then this goes beyond blind people. I mean you’ve got people who want to participate, who want to make input, their vision isn’t that good for them to see the number especially because it shows for seconds. It just goes shoo and then it’s gone.

Lihle Dlamini: We’ve been sitting here and discussing this, I’m feeling that I have to do something as an HIV positive person who is treatment literate. Kwi-community yethu akho muntu owaziyo nge-sign language, kumele nathi senze something. {IsiZulu} [In my community we don’t know anything about sign language. It’s not only deaf or blind people who should take a stand, we also have to do something.] Where can I go to offer my assistance?

Hendrietta Bogopane-Zulu: We broke the sector from various specifics. So a programme of HIV and blindness is headed by the South African National Council for the Blind and the programme for the deaf, it is headed by DEAFSA. And I can give you their information. All these organisations are national. You’ve got Disabled People South Africa that looks at policy, legal and human rights. You’ve got Autism South Africa that looks at interventions for autistic people, Down Syndrome South Africa that develops a programme, mental health. I’m the General Co-ordinator of the HIV and Disability programmes in the whole country.

Jason Wessenaar: Siyabonga Hendrietta, Buyile, support group nani babukeli emakhaya. Namuhla sifunda ukuthi kumele sibeneqhaza esilibambayo ekwenzeni ulwazi nge-HIV/AIDS lutholwe nangabantu abanokukhubazeka okuthile. Yenza is’khathi usize umuntu othile ongaboni noma ongezwa omaziyo. Izinhlangano nomphakathi nama-NGOs bebambisene nemithwala mpilo yendawo kanye nezibhedlela zesifunda kumele zenze ulwazi nge-HIV/AIDSlufikelele nakwabantu abakhubazekile. Bangaqalisa ngothumela umuntu oyedwa ayofundela ukhuluma ngezandla. I-siyayinqoba imayelana nothatha is’bopho solwisa ne-HIV. Sithembe ukuthi ulijabulele uhlelo lwanamhlanje. {IsiZulu} [Thanks to Hendrietta, Buyile, the support group and the viewers at home. Today we’ve learned that we have to play a role in making sure that information on HIV is accessed by people with disabilities. Make time to assist someone you know is blind or deaf. Community groups, NGOs and health care facilities together with educational institutions should make sure information on HIV/AIDS is received by people with disabilities. They can send one person to learn how to communicate in sign language. Siyayinqoba commits itself to the fight against HIV. We hope you enjoyed the show and are feeling the Siyayinqoba spirit, that together we can beat it. Join us again next week in the Siyayinqoba support group. Till then stay healthy and stay positive.]

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