Where Children Sleep

I love Photography that tells a thousand tales especially if the aim is to support a cause. The book of photographs 'Where children sleep' by James  Mollison's  has to do with children's rights. Mollison hopes his photographs will encourage children think about inequality as it compares children all over the world and the places where they sleep. I think this is a very good initiative and i also think adults need to be reminded of inequality...even though i am not entirely sure inequality can ever disappear from this world we live in.

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Photo Story of HIV and Tuberculosis

When i look at this photo I see an object that has been in contact with so many people living with HIV (PLHIV) who get debilitated by the opportunistic infection, tuberculosis. The combination of HIV and TB in the lives of these people causes a disability that makes them wheel chair bound, as both virus and bacteria take over cells in their bodies via blood vessels, they are unable to function as they normally would, becoming dependent on people around them for care. One of such people is Melusi.

I met Melusi when i went to the Nhlangano health centre in the shilseweni region of Swaziland. This was a 3 hour journey from the capital, Mbabane, where i am currently carrying out HIV research with two organisations, the Clinton health access initiative (CHAI) and the Swaziland network of people living with HIV and AIDS (SWANNEHPA). On this day, Melusi was being pushed around in this wheelchair by a nurse called Simpiwe.  After a long conversation with Simpiwe i found out that Melusi had been in the health centre for over 6 months. I tried to have a conversation with him but he seemed very weak to make coherent sentences. Simpiwe brought him out to get a bit of sun and fresh air and so i sat there with him for over an hour. She was a nice nurse, not like the rest. She seemed so passionate about caring for sick patients. She treated them like she had a deeper connection with them, like family. I immediately realised she was different from other nurses who went about their own way. Sometimes texting on their phone and other times having loud conversations between themselves. Simpiwe’s connection was simply based on the fact that she herself had taken care of 3 family members who had HIV and TB. She felt their pain, experienced their suffering and also got stigmatised both for having infected family members and caring for infected family members.  Her passion for caring for HIV patients got sparked and she decided to go to nursing school. This is why she connected so well with Melusi and treated him like family even though he was just one of many strangers she has pushed on that wheelchair.

I returned to the same health centre 5 weeks later and this time, Melusi was sitting on a little rock outside his ward. He remembered me and we conversed for a while. He is a truck driver and got infected through his many sexual encounters by the border near South Africa. He has a wife and two sons and couldn’t wait to go home to his family. His sons got kicked out of school because they could not afford the fees and now they barely even eat a meal a day. Poverty is the reason he took the truck driver job as he got to a point where he could no longer cater for his family. He didn’t like being away from home but he had no choice because his family’s survival depended on the truck driver job he managed to secure.

Melusi didn’t know he could get any disease from having unprotected sex and said he couldn’t afford to buy condoms regularly. He didn’t complete his secondary education you see, because his parents also could not afford to send him to school.  He felt if he knew of the virus he would have taken extra measures. He only hoped he hadn’t infected his young wife, who also did not make it through junior secondary school. He felt responsible for his actions and expressed how in a culture where polygamy and extra marital affairs are not frowned upon, it’s very difficult to be faithful to one woman.

Having been on Anti retroviral medication (ARV/ART) for some months now, he felt so much better and was beginning to get his strength back. Luckily, Melusi will not have to pay for his treatment as he gets them for free. The Global fund cut didn’t mean he wouldn’t keep getting ART’s; luckily he is a citizen of an African country where political will does exist as the Ministry of health actually provides free ART for its people. Also, the presence of international organisations like CHAI also means he will keep getting access to ARTs. Without this free medication Melusi could have died as his CD4 count before ART initiation was only 20. He had no clue he had HIV and only came to the clinic because he kept falling sick. He was able to access the clinic in just 30mins because of decentralisation of hospitals.  Prior to decentralisation, it would have taken him over 2 hrs. Now there is a health centre in every rural district in Swaziland where PLHIV could get free access to ART. Melusi has decided to dedicate his life to HIV advocacy. He has decided to join the network of PLHIV to work as an expert client.  Local organisations like SWANNEHPA will ensure he gets empowered and his rights stay intact through his journey. They have been working very hard to reduce stigma and discrimination of PLHIV and Melusi seemed very happy about his future prospects.

As Melusi was telling me about his life plans when he leaves the health centre, another young man was being wheel chaired into the TB ward.  He was very frail and had just bones left on him.  Melusi knew who he was. In a country of just 1 million people where 70% of them live in rural areas, it was not surprising. They live in the same region and probably also have the same socio economic situation surrounding them.  As the wheelchair went past me with this young man in it, I hoped that his story would be very similar to Melusis’.  I hoped that his happy ending would include HIV advocacy and empowering of other PLHIV. Unfortunately my hopes were shattered as right in front of me; on that same wheel chair this young man lost his life.  As the retrovirus took over every cell in his body and his throbbing heart came to a screeching halt, so does this story. I can’t say i have been the same ever since.

The journey to Nhlangano

Photo taken on my journey back from Nhlangano.

I travelled 2.5 hours from Mbabane to the Nhlangano health centre in Swaziland for field work. Today’s field work involved interviewing HIV infected individuals for job position known as ‘expert client’. An Expert client is a HIV positive person that offers counselling, support and advice to other HIV positive people. This initiative came about because research found that it is better when HIV positive individuals get involved in HIV prevention, advice and counselling of other infected individuals.  As you can imagine it’s always easier to open up to someone that is in the same situation and probably knows the difficulties you may face.

When i got there i immediately noticed the long waiting queue just to see a doctor. There weren’t very many doctors and so people had waiting time of over two hours.  This ranged from newly born babies to older citizens. I walked around the health centre really itching to take photos but it would have been a very uncomfortable situation for these people, especially as i didn’t have their consent. Not very ethical i thought, so i put my camera away and instead went on to actually meet these people and have conversations with them.

I spoke to the HIV positive women waiting to be interviewed. They had lost so much weight and all seemed very nervous about the interview. After i shook them and introduced myself, they went on to ask me how many expert clients were going to be chosen. Unfortunately i had no clue as i was not in charge of this. I reassured them all was well and tried to make the nervousness disappear. I sincerely doubt i was successful. Majority of these women were infected through their cheating husbands. What immediately struck me was these women seemed very repressed. The Swazi society is such that women have no say or can’t make decisions.  Perhaps their HIV status also added to their suppressed nature as stigma and discrimination makes this health burden worse. They all needed this job as this was the only form of income they had a chance of getting. One of the women i spoke to was fired from her job due to her HIV status so she expressed how important getting the expert client job was to her. I wished all of them good luck and continued on to exploring the health centre.

I went to the Tuberculosis (TB) wing and immediately i was asked to wear a mask at the entrance. I introduced myself to every one i came across and i was allowed to get into the laboratory...only briefly though!  I spoke with nurses and had the privilege of filming one of the nurses. I asked her TB related questions of which she answered so well. One thing she said that got to me was the fact that most patients are not able to handle the toxic nature of the drugs so most of them end up dying. Bear in mind that those that get admitted into the TB wing are HIV positive. So taking both TB and HIV medication can’t be so easy for people whose immune system is already suppressed.

After speaking to the nurse i noticed a man sitting alone getting some sunlight. I went and sat down with him. He told me he had TB and HIV and that was the first time in weeks he could come out in the sun. My heart sank. He said he had only been on Antiretrovirals (ARVs) just a week ago, and he had no clue he was HIV positive until he started losing so much weight and falling ill. Looking at him, it was clear he had a very low CD4 count and so was very late to get on ARVs. He couldn’t breathe properly and struggled with sentences. He told me to come back in 2 weeks to take a photo of him, that hopefully he would look much better for a picture. I felt so sad. All he wanted was to recover and go back home to his two sons.  I will be going back in 3 weeks to visit him and i hope he will be much better.

This journey opened my eyes to the reality around me. One recurring them was poverty. The HIV positive women and the HIV+TB man had that in common. When i asked, it was confirmed that majority of the patients were poor...very poor.  Some didn’t even have food to eat so how were they supposed to stand the harsh effect of the drugs? I really feel all these programs that focus on uptake of drugs should also consider if people have food because without proper nutrition, the immune system (which is already compromised), will not be able to fight off infections properly.  If organisations really want to help, then they should help properly. Just three days ago a woman in Swaziland ate cow dung because she had no food to eat before taking her ARV’s.  This is the reality over here and it’s so sad. I keep saying, if international organisations are not ready to immerse themselves into communities they do research in and carry out proper needs assessment, then there is no point! I say this because at this rate, they seem to be gaining more from these poor communities than these poor communities are gaining from them.  Organisations should direct funds and energy into poverty alleviation. For example, if funds were directed to education, a whole lot will change ranging from increased job opportunities to gender empowerment.  Only when organisations start doing so will i feel people don’t have vested interest.