Then & Now: Interview with Antony & Nancy in Nairobi, Kenya

Seasons change, but our purpose remains. We at Ten Thousand Homes believe in a world where everyone has a place to belong. Thank you for joining us.

Ten Thousand Homes was started in 2005 in response to a real need for shelter in light of the HIV/AIDS pandemic that had swept across sub-Saharan Africa. In the years since, we have seen advancements in awareness, science, and care enabling significant changes to the landscape of needs caused by this disease.

This month we are sharing a conversation our co-founders Jen and Jeremy Price had with Antony and Nancy Njoroge, leaders of Tumani African Foundation in Nairobi, Kenya.

Watch the full interview above or catch the highlights below.

Jeremy: Hello, Antony and Nancy, how are you?

Antony: We are fine, thank you, Jeremy and Jennifer.

Jeremy: Good. It is good to see you…

We are very proud of you guys and proud of the way you’ve chosen to live your lives and to do what you do. It’s a privilege to know you.  Antony, as the founder of Tumaini and the community-based work you do, we wanted to ask some questions regarding HIV and AIDS. The whole world knows what AIDS is nowadays, and we know that it’s been a big problem in Africa over the years. As you and I have talked about Ten Thousand Homes, we wanted to be a healthy response to the struggles that our brothers and sisters in Africa were going through. And so, if it’s alright with you, we just want to ask both of you a few questions about this and about life in Africa and about the struggles you find in your community. 

So let’s get started. Do you remember the first time you heard the word HIV or the word AIDS?

Antony: Yes, I clearly do. But first from a different name.

Jeremy: Yes?

Antony: The reason I say a different name is because when HIV and AIDS came to Kenya or when we knew of HIV and AIDS, I was still young. That was the early ’90s, mid-’90s, sorry. The word for AIDS in my mother tongue means ‘one who has a long neck.’ You know, because people used to grow thin, so it used to be called a name like “Mùkingo” meaning you could always see the neck or someone with the prolonged neck. The other name was ‘a killer disease,’ you know once you have it. In fact, it is not a killer in the sense that it’s a disease that kills. It’s like it is a disease that grinds. You know the one that grinds maize to maize flour. So once you get HIV, you are in a sense done like the maize corn who has already gone to the miller and has no option but to become flour. So those are the names and how HIV was introduced in my context.

Jeremy: So was it communicated from the very beginning that this disease was a death sentence?

Antony: I think the first experience we heard about it was through the radio. So little of it was spoken of within the community because there were certain things that you talk about in whispers. Also, because of how it is passed on – through sexual transmission. In Africa, you don’t talk about issues of sex openly, only at home. So it’s either we come up with stories or parables or perhaps idioms. So in most cases that meant, as a child, I would not be able to understand what is being talked about. I would not be able to interpret. But today, looking back, I can start relating the stories here and there.

Jen: So you said that they talked about it on the radio, but talking about a sexually transmitted disease was not something you would talk about, so did they say any other ways that it was transmitted or where HIV came from?

Antony: I think there were too many rumors of where it came from, because they would say it came from animals. At times they said it came from the west. Again at times, from a religious point of view, it was end times – the last days. 

On how it was transmitted, what was communicated was the person on the radio could speak about just about every means possible. Sexually, using rusty razor blades, using other sharp objects that have been used by somebody else. In the beginning, they would talk about the toothbrush. There were so many things that they would say that today we know you cannot get HIV from.

The sharing of personal items was so much discouraged. So they would say the ways that it’s been transmitted, but through the radio. In public places, they would use parables. There were also a lot of songs that were composed.

Jen: What about in school? Did they talk about it in school at all?

Antony: Not as early as I can remember, because I think I first heard it so much on the radio. When it came to school, it was not part of the curriculum unless it was happening at the higher level which I wasn’t involved in then, because I was in primary school. In the primary school level classes, we were never taught about it. But you would be warned if you were seen sharing personal things.

Nancy: I think in my case, I was still in primary school. Later the advertisements were so popular, they started arranging programs where they would bring someone to talk to, doctors actually, to talk about the disease. But now keep in mind, you are kids and they never used to say how you get the disease. I think whatever made them come up with such a program was when they realized the majority of the students were being affected. If one kid had a parent who is infected, then all of us would not want to associate with that person. But still, they would only teach about not sharing personal items, that was the main thing.

Jeremy: So maybe you could give us an idea over the years, especially the early years of your organization Tumani, how was your local community affected by HIV?

Antony: First of all, before I say how, I would say one of Tumani’s primary goals is to make the community aware of HIV and AIDS. Even today it remains one of our stated primary goals. It was a significant part of the reason for coming together. At that time, the positive cases were very high, the stigma was very high, people were dying, and there was a real lack of knowledge. So, one of the goals of Tumani was to make the community aware of the disease and perhaps ways to care for themselves and ways to reduce the stigma. So that was one of the primary reasons Tumani started – to give hope in that dimension. 

But again when it comes to the community and HIV and AIDS, I think the greatest killer of people who suffer from AIDS was not the disease itself. It was the stigma surrounding it…

The second bit was initially statistics. The people who became infected most in Kenya were the married and elderly, but then it shifted to the young people. The greatest impact was the orphans that were left. They suffered the most. There was a time when we had a generation brought up by the grandparents, because most fathers and mothers had passed on…

Jeremy: Is it different now? You speak of the stigma and how that was early on. There was a lack of education, and because of the lack of education, there was a stigma. Then you talked about mothers and fathers dying and a generation raised by the grandparents. Is that cycle continuing? How is it different now? And how is it the same?

Antony: Let me start with how it is different. One way that the cases are different is because of the introduction of what they call VTC, which stands for voluntary testing and counseling. They are in almost every village, and people are so much encouraged to go and be tested. As people grew into that confidence of being aware of their status, we found it is the most important thing. The first way to fight this disease is being aware of your status. So if you have HIV, you know how to manage it. If you don’t have it, then you know how to prevent yourself from getting it. The second was for it to become part of the curriculum in school. I think I have a lot of certificates of seminars or trainings on HIV and AIDS. We had a lot of peer counseling and peer work happening on many levels, and this really helped… One way or another people started looking at it differently.

There’s a lot of teaching about it, a lot of posters, a lot of education being incorporated within the school curriculum, and that really brought change. It’s lowered the stigma level, and it’s increased their self-awareness level. So that is different. The level of ignorance is low. People understand HIV better than they did then. We no longer wonder where it came from. We now look at it as, “Here it is with us so what can we do?” 

Another bit is the introduction of  ARV’s [antiretroviral medication]. They are free, and the medical centers that have them are spread throughout the country… 

Initially, you could not work if people found out you had HIV or AIDS. That was the beginning of losing your job. Again, you could grow weak and unable to carry out your income-generating activities. Given that with ARV’s, you were able to manage your health and boost your immunity which means you can live your life as long as you’re taking your medication.

What is the same? There is still fear. I know people who will not visit their local VTC because they’ll fear of someone knowing that they have HIV.

The introduction of condoms helped a lot…

We have orphans. We have people who are still struggling in life because they lost their parents or their parents lost their jobs. There is a stigma still there though not as much. We are still having HIV with us. That remains the same. People are still getting infected…

Jeremy: Would you say that HIV and AIDS are still a significant challenge for your community?

Antony: In the context of the pandemic, it really became a problem. During the first wave, our organization did a food bank to help provide food, because taking the ARVs without eating is a problem. So we had to try and provide food for them. Another problem with the pandemic is restriction of movement. Most people don’t visit their VTC or clinic near them. They go to a clinic in a different community where they are not known. During the restriction of movement of the COVID pandemic, this became a challenge, because you must go to the clinic who has your records. Now, because you’re not visiting, it became a challenge. Then there was a challenge with the availability of ARV medication.

So it’s a challenge from a health perspective – it’s still being transmitted, there’s still a stigma to deal with, and there are still orphans to take care of.

Jeremy: Thank you for sharing all that. It means a lot. We need to hear that perspective and hear what others are experiencing and what they are walking through and the challenges that you face…

It’s invaluable insight and perspective. Again, we are super proud of you guys and proud to call you friends. We believe in you and the work that you doing. Thank you.