Without Grandmothers, what would our world look like today?!

Grandmothers on the Move – A Grandmother, a Leader, a Visionary, and a tireless advocate for people living with HIV & AIDS, Pfiriaeli Kiwia is the inspiring founder and program director of Kimara Peers Educators and Health Promoters in Dar es Salaam, Tanzania.  Mama Kiwia brings the indefatigable grandmothers of sub-Saharan Africa at the heart of the response to the AIDS pandemic, raising millions of orphaned grandchildren, right into the room with us. Her insights and her story of turning personal determination into powerful collective community action are guaranteed to stay with you! Part of the Grandmothers on the Move podcast series on the Grandmothers to Grandmothers Campaign – Solidarity, not Charity! This is where hope lies – at the grassroots – with grandmother leaders like Pfiriaeli.

Transcript

Speaker 2 0:05

I'm Elana Landsberg-Lewis, your host of Grandmothers on the Move, the podcast that kicks old stereotypes to the curb. Come meet these creative, outrageous, authentic, adventurous, irreverent and powerful disruptors and influencers. Grandmothers from the living room to the courtroom, making powerful contributions in every walk of life. We know them most intimately as loving caregivers, the older women in our lives, with a thousand stories about their grandchildren and pictures in their purses. In this podcast, you'll come to know even more about our grandmothers. They are galvanized, determined and are guaranteed to get you thinking. What drives them, what are they up to? What is the potential of grandmother power and how is it changing the world? Grandmothers are on the move. You don't want to be left behind. Hi, it's Elana. Welcome back to Grandmothers on the Move, and today I'm bringing you a really special conversation directly from the heart of the Grandmothers to Grandmothers campaign.

Speaker 2 1:09

Fidielli Kiewia, also known as Mama Kiewia, is the program coordinator and co-founder of a community-based organization in Tanzania called Kamara Pure Educators and Health Promoters. It's an organization that responds to the HIV and AIDS crisis in Dar es Salaam. She has worked in the field of HIV and AIDS for over two decades, with a focus on everything from prevention to counseling to stigma reduction, human rights, program management, capacity building, and she was a member of the organizing committee coordinating and leading the Tanzania Grandmothers Gathering held in Amrusha, tanzania, in February of 2018, just recently. She also holds a Bachelor of Arts degree in economics from the University of Dar es Salaam. She's a compassionate, forceful and determined leader, and I look forward to sharing our conversation with you today.

Speaker 2 1:56

Of course, as I've said in the past on other podcasts episodes full disclosure this is part of the series that I'm doing on the Stephen Lewis Foundation's Grandmothers to Grandmothers campaign, a campaign of grandmothers and grand-others that started in Canada and has now spread to Australia and the UK and, most recently, the United States. It stands in solidarity, raising awareness about and funds for, the tenacious African grandmothers and their community-based organizations turning the tide of AIDS in sub-Saharan Africa. And, as most of you know by now, I am the executive director of the Stephen Lewis Foundation. So onward with Mamakouya, welcome Fioria. Elly, it's wonderful to have you on Grandmothers on the move. You've devoted your life to working on HIV. How did you come to this work and why did you decide?

Speaker 1 2:43

to take this path. Thank you, and this is a long history. Behind this, much is very personal. What happened to my own life and the other was seeing really what was happening in our community friends losing their beloved ones. Do you just sit there and say it's done?

Speaker 1 3:03

I had these good employment for myself, but I also thought of the other people we are going through. What I had gone through I wanted to see if we can make some change made me feel good and also gave me a life to live. So much of what was happening was to see myself stepping in, but also seeing other friends stepping in with me together, and I was happy that the initial people that started the program also them are still with the program and we see the sense of being part of this community and I would say in times it's not appreciating yourself, but what other people say about what you contribute into their lives. So to me, this has made a lot of sense of why I am still alive today. The time we started, nobody was talking about HIV. The time we started was a lot of stigma directed personally to each of us. But if we could stand that, why now give up? Because it's now more open. It's now, people talk about it and programs are on foot. We help people move ahead.

Speaker 2 4:18

You were working in a bank and you had, as you say this good employment. What led you to make the decision to change what you were doing in your own life and start an organization.

Speaker 1 4:29

I think I need to pull history back. I left my job in 1987. I had worked for 11 years with a bank and then, 1985, I really got sick. I was in bed for almost two years. The system used to pay our bills at the hospital, but when HIV was coming in, if you were too sick for too long, it's HIV, so no bills are being paid. Why don't you just pull yourself out Because you don't want it? You feel it. You're not even told, but you feel it, and how many more were also feeling that. So my story began there, when nobody was paying my bill, nobody was valuing my 11 years of work and nobody was interested in seeing me living. So I didn't initiate QRP.

Speaker 1 5:16

As until 1992, when I had recovered, when I had good health, internalizing what really happened in my own life was like pulling together myself and start moving around and seeing who else, because I had the vision. So I had told several of my friends who I knew had some relations to the HIV epidemic by then and convinced them can we do something? Should we just keep quiet? Yes, I'm doing good business. I had several cows. I lived in Kimara since 1986 and I could establish myself with my business and I was doing well, very well. So they said how do we start? I said let's start just like a neighborhood program Help each other. We have the sense that they are going through something similar to what we are going through. That's why it's called Kimara Kimara peers. It really started in the community was a neighborhood program. We attended several funerals quietly, but we had a movement, was just like a friend to friend, a neighbor to neighbor, and we got stronger. Everyone could see us and could notice what we were doing. Then they started convincing us. Why don't you make your work for me? This is something very good, but, mind, you are dealing with human life. Why don't you make it for me?

Speaker 1 6:35

So, june 1996, we got registered as non-governmental organization. It's a support group of people living with HIV and those impacted by HIV and we had this vision. We want people to understand what it is Men to men, women to women, young people or people, but all peers, people who have reasons to be together as peers. So the peer movement was what was holding us together In our communities. It's easy to pull people together when you have drum beating. That was one of our strategies.

Speaker 1 7:11

So we trained ourselves to move into communities with drum beating, pulling crowds and sending out the message this is HIV, there's HIV around us. How does it look like? How do you know you're infected? And, mind you, there's no medication yet. So the knowledge, helping people who are negative to remain negative, positive to help each other, started that way. And as we pulled the crowd and you were through with your session, a woman can come by you and say, oh, can you come home and tell me if my son is HIV positive? The disease you're talking about is really what is happening at home. Can you come? Can you talk to my child? I want to know if this is HIV.

Speaker 1 7:55

We had no skills, no skills at all. How do you go and tell somebody the HIV positive? So we had to learn how to talk to a person, and this is the counseling how do you talk to them so that they can now go to the clinic? We thought we were just giving out information. Now people want us to go home. How do we start?

Speaker 1 8:15

There was this doctor in Morogoro, dr Lucy Inkiya. We wrote to her. We had told her we are doing HIV work. You're a medical doctor Most of us were no professionals at all and she said come. So some of us traveled to Morogoro. We had this training full week. We said, dear, we don't understand this thing. She helped us to get the language of doing counseling and the skills.

Speaker 1 8:38

So we started counseling by then, with HIV prevention and information dissemination. We had uniforms, t-shirts written Kimara, peer educators. Now we are going to the homes. How do you go with the uniform? It's like you're telling people I'm going to an HIV positive person, follow me, to stigmatize. So we had to learn how to move to the homes and this is the home-based care program that we started. But, mind you, as soon as you go home, people get tested, they confirm their status and they are sick. There's no medication. We had to learn palliative care, preparing people to die. We're losing friends, people are dying, good people are dying, leaving children behind. Lucky, most of the homes we had the grandmothers. Those are our heroes and they were there from the beginning of the epidemic.

Speaker 1 9:28

Who took over the responsibility of the grandchildren, taking care of the grandchildren? She was there to hold them tight. At times she would be even ashamed to say I lost another son, I lost another daughter and I've taken in more grandchildren. It was through the support groups that we could know who is getting the most body of it, what they're going to eat, how they're going to survive. Now you lose a friend. You can abandon the family. You go back, talk to the children, but what do you tell the children? The person who was there was the grandmother. So the conversation moved from the person who was on bed into the grandmother and then the children were left behind looking at their grandmothers. Now she would say the most important thing is to take my children to help them be in school. So we started a school program. The grandmother looks at the children only. What about herself? So we also had the support groups of grandmothers to see how are they being held to take care of the children and take care of themselves. Now the grandmother says it's okay, the children are in school. By yesterday we didn't eat. So we start looking at the food parcels. But how many grandmothers are we going to be able to feed over the year 2010? We were lucky.

Speaker 1 10:45

Three of our grandmothers went to the grandmothers gathering in Swaziland. They met other grandmothers and they learned how other people were managing the volume of grandmothers in their own community. When they came back, they shared some good information of how to initiate a financial base to start income generating activities. And these are the community-based household income and savings association set up which is our pride over the years. So the grandmothers groups who are now meeting as mutual support groups. Nobody would lend them money to do the small activities at home, so they needed somewhere where they can borrow money and do the activities, repay into the group and the process was a movement that was very helpful for them so they could get loans, they could meet. So this is the way they helped each other. But finances is not all it. Everybody had this heart in inside saying I lost my daughter, I lost my son. Now it's like, yes, I'm coming to the group but I'm still carrying a very heavy burden.

Speaker 1 11:53

So we had lots of stress management workshops and the grandmothers at first were really laughing and asked to learn. We already done with our children Within the skills building of how to parent. We also needed to help the children know they are being parented and there's somebody caring for them. So there are sessions that will do with the grandmothers. There are sessions that will pull the grandchildren also on another open space, safe space, to discuss what actually happened. So the children start learning. Life is a process. Life comes and ends. And then now, who is there for them? The grandmothers, is the community-based organization, the people in the organization, their counselors they can talk to, they can rely on them.

Speaker 1 12:38

And then, what about the future? So we needed them to start drawing the future, a future that is beautiful, a future that suppose your mom comes back turning us down the road, not physically, but comes back in spirit. What would you want your mother to see in you? And then these children start drawing and we say draw it, put it on paper. Want to be a doctor? Yes, put it on paper. Want to be a lawyer? Yes, put that on a paper. And then they will draw.

Empowering Grandmothers Through Shared Stories

Speaker 1 13:10

And where would your grandmother be? Oh, she would be just around to see me graduate. So, put that on paper as well. They put it up in the wall. That's your future. You're setting one. To be a lawyer, yes. And then we say now, here you are. You just enter in secondary school. What do you need to do today to be the doctor that you've drawn and is on the wall? And then those that, like I'll do, I'll work hard in class. And then, what else? I'll work hard writing. What else I'll do my responsibilities when I come home to my grandmother.

Speaker 1 13:45

And then also, where's the grandmother? The grandmother is on this journey of life. And then why do you think you need to be very helpful to your grandmother? Because she's the person I'm depending on now. Oh, so do you love your grandmother? Yes, can you give her a big present to start drawing flowers on the journey of life as they walk towards their dream?

Speaker 1 14:09

So we have the child to really appreciate the position of the grandmother. So the dreaming of the future is part of the training. The skills building between the grandmother and the grandchildren is to make the connection. And eventually we will see in the grandmothers who never thought are gonna learn skills in their age, wanting more skills and saying we want these kids to be taught to us. The grandmothers will say I think I'm better, I think you should help that grandmother. She has taken in another six grandchildren Myself I can step back, but they keep on coming to the support groups. Now life is there and we are lucky on the way medication came. Our vision of the home base care and palliative management has really changed into helping people with the medication, how important it is in life and how it works in our bodies and how adherence is a key.

Speaker 2 15:07

It's a story we've heard so often before about how women at the grassroots community level just stepped in to respond to what was happening in their families and their communities around HIV and AIDS. I wonder, fidia Eliyev, if you can talk to us a bit about how the work with grandmothers has evolved and how you found them before, started doing this work and where they've come now, and how the engagement with Kamara Peers, your organization, has made a difference in their lives.

Speaker 1 15:35

In Tanzania, the being of the grandmothers was initially holding the communities together, starting with their family, where you lose your own children, but you have a responsibility that you can't run away from. At times, some grandmothers will say I want to commit suicide, but at times, when you talk to the grandmothers, you walk her through and make her understand how important it is for her to be in existence. They said like I shouldn't have thought about killing myself because of the burden, and the community-based organizations were stretching out to see that at least there is the initial survival. And then, when it was like, how do I make it? We needed to see them coming together like shoulder, rubbing their other shoulder and moving the journey together. Actually, most of those who come to the community-based organizations have no means of survival. This is why food parcels were there and the pain of school fees and the uniforms was very important for them and, as they walked down the road, helped them have the spirit to look forward and to see a future, even when you are very old.

Speaker 1 16:46

When a person loses a child, there are people visiting, but this covers, they say, the week or the month of the person who passed away, and then thereafter it's like you need to pick yourself and continue. But for the grandmother it's not like that, it's a bit different. You lose one, you lose another. When you come back as an organization and you want to sit down with a grandmother, that's the initial process and the grandmother will start crying again. She's down again. It's like you're reminding her of what happened. The first thing is not looking at herself. You're quite a crunchy and say how many do you have? Say six, eight and the rest of it to HIV positive. But to other cases who say but this one is not even growing, the others are okay, but these two are not growing at all. So we needed to see how we can answer. They don't know.

Speaker 1 17:39

In some cases we had to help the grandmother take the HIV test of the children, which is different from just a normal grandmother, and then the children are put on medication and they start to grow and they're also taken to school. So this one is done, they just need to go to school. But it needs to continue helping the child to take the medication. So literacy on ARVs was for her to understand. The medication is daily, specific time, and the child also needs to take the medication. But when they're younger it's okay. She's going to tell like, come on, take the medication. But later the child grows and the child one answers so do you leave the grandmother alone? She has no skills to tell the child. So these are the processes that we need to take the grandmother through so that I hear it's okay for the child and the child. Now, as the child grows and is able to consume the message, then the grandmother is also helped through the process.

Speaker 1 18:39

So you're talking about disclosures, helping the grandmother disclose to her grandchildren, the grandchildization, because at first you tell her you need to tell the child and then she said so I tell him that my own child was so bad to pass HIV to the child. Is that what you want me to tell the child? But the child is growing. So we help the grandmother to walk with the child in the steps. So this is the learning we do with the stepping stones with children the grandmother together with the child, slowly, until the grandmother is able to tell, because this is the person the child trusts. So the skills is not for you to come and say you're helping for the baby and you learn. No, it's the process of helping the people who are intimate to learn from one another and slowly the grandmother's peak on those and we've seen for the grandmothers that are helped to learn the skill how to parent the child, hiv positive or HIV negative, and the more they walk on the same steps together, helping each other, the better for the child and the grandmother. So the process is for the grandmother to learn was not her fault for her child to die? And it's not her fault that the HIV was passed to a child. And at times we might think the counselor is going to be able to do that all. But it depends on how the grandmother would connect to another grandmother and another and another, so that she's not alone in this struggle of coping with heart attack.

Speaker 1 20:09

So the more you're connecting them, the more we see our grandmothers being stronger together. It's not an individual one only. Each time they meet it's like oh, so you're also going through this, so they will start slowly talking about it and then start to think loud and talk loud. And then you find them in a support group. They are singing and they are happy and looking for what is next. It's like when are we meeting next? So they want to be supported. Most of the grandmothers they were grown stronger because they can meet. They have a reason to wake up in the morning, take a warm bath, dress up well and then come to the group.

Speaker 2 20:49

So there was a grandmother's gathering in Tanzania and you and your organization, Kamar Pears, were on the organizing committee, other community-based organizations, but that gathering brought together over 200 grandmothers from across Tanzania.

Speaker 1 21:04

Yeah, exactly yes.

Speaker 2 21:06

And tell me a little bit about what happened at the gathering. I know there were many workshops that the grandmothers were doing with each other and why was it important for that gathering to happen? What happens as a result now of those grandmothers coming together?

Empowering African Grandmothers Through Solidarity

Speaker 1 21:18

Yes, the grandmothers gathering in Tanzania brought together 200 grandmothers in Tanzania, a few other grandmothers from international Australia remember UK, us, canada and then we had other grandmothers from South Africa and Uganda who had their own gathering, then tried to ask is historic? It never happened in Tanzania. And first when we started the committee, it was like would this ever happen? Our country is so big. Do you have many grandmothers Are we going to be able to bring together? And we are lucky they did come and for some of the grandmothers actually most of them had never moved out of their own communities. It was the first time they stepped out of their communities. And to them all, coming together with grandmothers from their corners, they were oh my God. So we are not just ourselves and this world. There's space to show what had happened, not for eliminating it from their lives, but at least a time to breathe out. So it's like oh, here we are, you also, you also, you also.

Speaker 1 22:23

Each of the groups were like this is our time to show our talents, how we manage deeds, trust, management, parenting skills, grief and bereavement, talking to adolescents and young people about HIV and how to make it through life, dreaming of the future. Those are part of what was in the sessions, breakout sessions and workshops. Grandmothers were doing the workshop for other grandmothers. It was so amazing to see them seated, listening to one another, at times clapping heavily, clapping their hands, and then the others will say, oh, so I was going through the same, but I didn't have that skill. So it was like a learning and sharing process and this really encouraged them to show that they are these strong people for their communities, for themselves, for their children. The grandmothers had opportunity to plant new seeds in their lives and we know over time the seeds will germinate and at times we're going to harvest. But the other very important event that happened with Arusha was solidarity work. Grandmothers in red, yellow, blue in our countries not allowed a lot of processions, but the roads were blocked. We had a police pen bleeding, so we filled the Arusha streets with grandmothers and they had an opportunity to tell them what grandmothers have done within the HIV pandemic, how strong they are, how strong they've been able to hold their communities together and raising a generation of presidents, prime ministers to come.

Speaker 1 24:02

We need further support, particularly for themselves and for the children under their care. We know that we still have a long way to go without eating in the morning. There's no food program. The grandmothers can afford very little. Community-based organization can afford a limited way of helping. But the government needs to look further.

Speaker 1 24:23

When you say school is free, but what would it look like when everyone else is on uniform and one, two, three, four, ten children are not in uniform? Is that telling the school system that these are vulnerable, these are orphans, these are HIV? So even where such subsidy is vivid and we really love it and it really helped a lot of children to go to school, yet there are those things that are basic to the child and with HIV, there's no way you're going to eliminate 100% or eliminate stigma. There's no way. It's not an easy disease. People are like I don't want everybody to know what picture am I painting to the community? And communities are not ready. If they were ready we wouldn't have gone where we are. And if you accept and people are going to accept you, then you can shout about it.

Speaker 2 25:13

I have the lovely opportunity today of sitting with you in person. Usually I do these interviews long distance, but today, because you've been visiting in Canada and speaking to grandmother's groups who are part of the Grandmother's to Grandmother's campaign across the country, I wondered if you could tell me how your experience has been, how you think of the Grandmother's to Grandmother's campaign in the global north. This is a campaign, as we've said on this podcast before, that's founded in solidarity, not charity, respecting the dignity and the determination of the African grandmothers and their community-based organizations, raising awareness about and raising funds for the African grandmothers and organizations like Kamar Appears. How does all of this strike you, having a chance to speak to the Canadian grandmothers yourself?

Speaker 1 26:00

I've been here and I've seen the Grandmother's moments In terms of feeling like, oh my god, these are the hearts, the innards of human beings thinking of another human being. Even when there are no surroundings with their children, there are many messages. Despite that, we don't have losing our own children and grandchildren and our tables crying to be fed, but we feel how much you are doing, how valuable it is, and we are together because we're thinking about how much you carried in your own being. Can we come together, scrammothers, to show our own love and the feeling that we are there, like we are right in your midst? We are working with you together. The major difference I've seen nobody is telling us what to do. That's very, very important, very unique in the Grandmother's movement, very different. Nobody is telling us what to do. They're so excited, they meet, they have their own programs and they are thinking about somebody they've never seen, but they visualize this. To it and to me, this is like the love in the heart.

Speaker 2 27:06

Mama Kouya, if you had all of the grandmothers and grandothers in the Grandmothers to Grandmothers campaign together, what would you want to say?

Speaker 1 27:14

to them We'll win the war if we work together, we'll just win. We'll just win.

Speaker 2 27:19

We'll just have our hearts together and the love and moving ahead and for the Tanzanian grandmothers, if you had them all in one space and all of their community-based organizations, what is an important message that you would want to convey to them now, in this moment?

Speaker 1 27:34

I would say life is appreciation. We've gone so far. We need to appreciate who we are. There's life today and there's life in the future.

Speaker 1 27:43

Suppose the grandmothers were not there from the beginning of the AIDS pandemic, what would the world be looking like now? And we just left things like happen the way it was coming down to us, because treatment is there, but who gives the medication to the grandchildren? Food is there, but who would cook for the two years or the one year old? Clinics are there, but who walks the child to the clinic? Crying is there. Who helps the child to cry? Who is helping generations over generations to see a future Child be free when their own parents are no longer there?

Speaker 1 28:18

And if we were not like looking at the grandmother at their age? Because we look at them, they care, they look after their children, but who cares about them? Who looks after them? So we need both the grandmother and the child, and we need it today and tomorrow, but tomorrow which is more happier than today. That's why we need to hold strong. It will go, I know for sure. We're going to win the battle. But who is there? Who is it all over in communities when we are losing their primate, the grandmothers making their children have a future. Walk and go and create something better for everyone.

Speaker 2 28:57

Well, I could talk to you for hours and hours, because there's so much to learn from you. Thank you so much, mamakorya, for taking this time with me and for all that you do. Thank you, thanks for listening. I'm Ilana Lansberg-Gluis, your host of Grandmothers on the Move. If you want to find out more about me or the podcast, go to grandmothersonthemovecom and come back next week for another episode.