Conferences are a strange space. The idea is that people from different corners of the world with various experiences and perspectives come together to engage one another and find a way forward to make things better. I imagine this probably happened, somewhere in the terrace rooftop or west ballroom. But a few meters away, there existed another space. A space that is made to appear as a meaningful space, but is actually meaningless. In this particular instance, a space that was nearly a tent.
The community Imbizo centre was almost a tent outside the CTICC. Thankfully it wasn’t. Instead it became an “all-access” space in entrance 5 of the ICC, but still, it was a space far from eastern and western ballrooms. In essence there was conference space and outside space. With two very distinct groups, operating in each.
On the opening of the conference the TAC and MSF held a march for TB awareness. There were hundreds of people in the streets, wearing bloodied masks and holding various placards, and those people who were marching through the streets are the foot soldiers in this fight against TB. These are the people that have survived TB, they are the care givers, and everyday of their lives is dedicated to saving lives. In a country like South Africa, these people are arguably the most crucial, in the fight against TB.
When this group handed over a memorandum to the South African Minister of health, demanding that the government declare TB and DR TB as a public emergency. It was done outside the convention centre. Everybody else was sitting in various sessions completely unaffected. but supposedly engaging one another on ways to get rid of the TB epidemic. Unfortunately, this very interaction that plays out in outside spaces and conference spaces is an accurate illustration of the response to TB. The profiteers and policy makers sit in both air conditioned and air tight spaces, while the sick and desperate and those aligned closely to them (either through advocacy or financial support) are left outside.
Everybody is always trying to tell us that we need to fight stigma, we need to make people understand that TB isn’t a disease that only affects people living in poverty. This is what we preach to the world, day in and day out. How is it then that an entire community space was almost going to be put in a tent outside? What is this ? The Group Areas Act? This separation of spaces is reminiscent of Apartheid Laws that dictated who belonged and who didn’t. In this instance it seems that civil society does not belong.
It’s disheartening that after the fight against HIV/AIDS, many civil society groups still have to fight to be considered as worthy and legitimate. Regardless of what you may believe, we must not forget that it was people power that challenged an entire government and brought down pharmaceuticals companies. This TB epidemic is much the same thing. How are we going to get anything done, if the very people we should be working with cannot recognize us as a legitimate voice for the people who would otherwise go unrepresented.
As civil unions, we are not guests to this conference. You are not doing us a favour, by inviting us into your space. We may not be your typical conference goers, we don’t own suits and we walk around in T-shirts that say, TB suspect and “HIV positive”, we are loud, and we don’t ask for permission. Because unlike the pharmaceuticals companies, we are actually in the business of saving lives. Only,our business hours are longer than 9-5 on weekdays, they are a lifetime, and they pay much less.
To some, we may be an inconvenience. Please pardon our impatience and militant reactions to bad policies, but in case you haven’t realised: While you are conferencing and sitting in air conditioned halls, people are dying. Conferencing doesn’t save lives, action saves lives.Where lives are at stake, and the right to health care is in question, we cannot afford to be complacent.
Because more than just a medical epidemic, our response to the TB epidemic is a violation of Human rights. Denying people access to life saving drugs, either financially or politically is a direct and gross violation of human rights. Often we over complicate the simplest of situations, but if we take a step back and look at the story of TB the narrative is clear.
People are dying of TB, we have life saving drugs available, and they must be distributed. The TB drugs in use were developed more than 50 years ago. the cocktail given to patients produces horrific side effects including hearing loss. We need the new more effective drugs to be made for readily available. We know better, so we must do better. Choosing human rights, means that we choose equality and dignity for all, and whether you exist in a conference space or an outside space, you deserve life.