Lack of HIV programmes targeted at people with disabilities are the main cause of the spread of the pandemic within disabled communities. That’s according to DeafSA, an organisation representing deaf people in South Africa. They say it’s a double blow, as they don’t only deal with the disability and HIV, but also struggle to get information about the pandemic. A 39-year-old man from Soshanguve, who lost his ability to walk due to bone Tuberculosis, says his disability holds him back as it drastically changed his life. He lost his family when his wife left with their two children while he was in hospital for months undergoing treatment for HIV and TB. Joseph Mbewe lives alone in a four-roomed house in Soshanguve outside Pretoria. He has described the past three years as the most challenging in his life. He was diagnosed with bone TB and HIV in 2009. Mbewe lost his job as an electrician as he was constantly off sick prior to being admitted in hospital. He says after losing so much he wanted to fight with the little that was left of him and his life. Mbewe says, “I just told myself I’m sick. I didn’t even think about killing myself or anything like that. I had to accept that I’m sick, that is what keeps me going even now. You know, when I was using the wheelchair, my life changed. When you are on a wheelchair you feel like your life is over, but moving from using the wheelchair to the frame, I told myself, I will be able to walk from here, that I’m recovering. I stopped believing that I was sick, I know one day I will be fine, like everyone else.” He says nothing could be worse than getting TB as it changed his outlook of life. It was when he was in hospital that he thought he would not make it, as he constantly saw other patients die in his ward. This got to a point where he would avoid sleeping at night, terrified that he would not make it.
The only reason I fear HIV is because it’s not curable but it’s not like other diseases like TB and Diabetes
“TB is dangerous, it knocked me out. HIV is ok, they tested me and told me I’m HIV positive, but it’s not as dangerous as TB. I saw a lot of people die in front of me. You’d be talking to a person and the next thing, they are quiet, not responding, they’ve died. I’m terrified of TB more than HIV. The only reason I fear HIV is because it’s not curable, but it’s not like other diseases like TB and Diabetes”. He has now been cured of TB and is taking antiretrovirals for HIV. Mbewe can hardly move around his house, but has had to learn to make a plan as he doesn’t have any support. “I battle to do a lot of things, like cooking. If I cook today I should cook enough food to last me for at least 3 days because there is no way I’d stand and cook every day, I can’t. I can walk, but I had to take breaks and stop after a very short distance” says Mbewe. The deaf community faces similar challenges and more. While there are no official figures on the number of HIV positive people within the estimated four million deaf people in South Africa, that’s not to say they are all living free of HIV. Zamikhaya Mpiyonke of DeafSA, speaking through an interpreter, says the deaf community has been neglected for years in HIV/Aids plans. He says people with disabilities will always lag behind in understanding and accepting their HIV positive status as they remain the vulnerable groups in society. “The views about HIV/Aids would be a bit different compared to people who are having access every day. Like now when you are saying to a deaf person you are HIV positive they will be glad if you tell them that because now the word positive means something good, they will go wild like, very happy but then you have to tell them no life has changed you have to use condoms now. So because they do not have that kind of information, then that has a big impact on their general view of HIV and Aids.” He says they need to start by eliminating the myths that exist about deaf people and people with disabilities. They remain vulnerable as some people consider them dumb. While others think they are immune to HIV and people can be cured if they have sex with a disabled person, hence they become targets of rape. “They are still behind about disclosing their status because they feel like if I’m HIV positive people will laugh at me. They do not disclose, they do not say a thing about their status and they are dying in silence plus outside community they believe that deaf people are nice people, they do not do sex. They are not at risk of HIV and AIDS and they neglect them like that. That’s how it’s spreading and its a concern” he added. While the high statistics of people living with HIV may be a shock to many people, Joseph was encouraged by long queques of people with both TB and HIV. Mbewe says, “I was terrified because I thought I was the only one who was sick, but since I found a lot of sick people at Kalafong, I stopped worrying. I accepted that I’m not alone, why should I worry? That thing made me recover sooner/quicker because when you are sick and you worry a lot, you become worse.” The country’s new National Strategic Plan for 2012 to 2016 states that people with disabilities have higher rates of HIV. Therefore attention should be paid to the different types of disabilities as the vulnerabilities of different groups and the associated interventions required will vary. It’s hoped that government’s efforts will lead to a change.
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