Florence Namaganda on creating a truly inclusive society for children with disabilities.

Florence Namaganda, Ugandan founder of Mukisa Foundation, shares her journey as a neuro-pediatric therapist and physiotherapist who first encountered children with disabilities on her first day at medical school, a moment that left a profound impact on her.

Christey and Johanna chat with Florence about her need to comprehend why these children with disabilities were segregated from mainstream society and how her investigations revealed a troubling reality: many parents believed their children's disabilities were the result of witchcraft, or punishment for wrongdoing.

Florence shares her passionate determination to change this narrative and how through Mukisa Foundation she has supported over 4,000 children living with disabilities across Uganda. She also discusses her wider vision of creating an inclusive society where people with disabilities can really thrive, starting within their families.

Get Involved!
Learn more about Florence's work and how you can support her to deliver holistic support to Ugandan children living with disabilities and their families by visiting  justpeoples.org/leaders/florence

Why Give a Buck?
Because with $3,520 USD Florence can support 5 children living with disabilities with comprehensive medical care and nutritious food for a whole year. These kids and their families will join the safe and supportive community that Florence and her team have created at Mukisa Foundation. Children who need them will also be referred to specialists to receive assistive devices and corrective surgeries.

Transcript

Johanna 0:00

Why Give a Buck? is proudly brought to you by Just Peoples, an international nonprofit that directly connects givers and doers to address global poverty.

Hello, and welcome to Why Give a Buck? But I'm Johanna de Burca,

Christey 0:20

and I'm Christey West.

Johanna 0:22

Each month on Why Give a Buck? we highlight innovative individuals tackling poverty and in local communities across Africa and Asia, and explore why they should give a buck.

Christey 0:33

Today we're speaking with Florence Namaganda, the founder of Mukisa Foundation. Florence's journey began in medical school where, for the first time in her life, she was confronted with the stark reality of stigma and neglect faced by children with disabilities. This encounter fueled her determination to create an inclusive society for all children in Uganda.

Johanna 0:56

We're chatting with Florence today about how innovative programs and a dedication to ensuring inclusive education has enabled Florence and her team to change the life trajectory for over 4,000 children living with disabilities and their families across Uganda.

Christey 1:11

Welcome Florence to Why Give a Buck? We're so happy to have you here.

Florence 1:16

Thank you, Christey. Thank you, Jo. I'm so glad to be here. This is my first podcast, so please hold my hand. Wow, your first podcast.

Johanna 1:23

Wow, your first podcast! Goodness, your story is so wonderful. We're so honored that you are doing your first podcast with us.

Florence 1:30

Thank you. Thank you for having me.

Johanna 1:32

So Florence, you work with children living with disabilities every day. But you told us when we first met you that you actually hadn't seen a child living with a disability until you were 19 years old. That's extraordinary. How come?

Florence 1:47

Yes, that's correct. I first saw children with disabilities on my first day as a physiotherapy student. When I was 19 years old, these children had been brought to the neurodevelopmental clinic where they were meant to receive their therapy services. I was shocked. I didn't know what to do. I didn't know whether to look or to look away. I kept wondering what disease is this? Why do they all look different? Why are they being carried? You know, I had so many questions. And when I reached the school, I asked what condition that was or what disease it was. And I was told it wasn't one disease. It was many conditions. I was told this is cerebral palsy. This is hydrocephalus. This is Down syndrome, you know all the different disability conditions. And then when I gathered my courage to ask to meet the parents and asked them how they were doing, and what was wrong with their children, they told me a different story. They said they had been bewitched, they're being punished for something that they must have done wrong. And you know, they had so many myths and beliefs surrounding the reason why their children were that way. So it's no surprise that these children are never brought out in the open. They were never in my school, they're never in my community. These parents also told me that they come very early for therapy, and in the morning, like maybe 6am before anybody can see. And then they sneak them back into their houses in the evening. So that nobody can know that they have these children.

Johanna 3:11

It's so utterly heartbreaking to think about that shame and that stigma that the parents are facing, let alone their children. And how shocking for you on your first day at medical school to uncover that there's a whole section of the population that you didn't even know existed. I can't even imagine what that was like. So shortly after you finished medical school, you move to London for a while. And this was I guess, the next stage in your journey. Can you tell us a little bit more about that time in your life?

Florence 3:12

Yeah so the grounds for going to London actually was to go and make a lot of money and come back to Uganda and set up an ideal center that I wanted to set up where children with disabilities would flourish. So the idea was, get out of the country, because in Uganda, most young people believe that once you get out of Uganda, money grows on trees elsewhere around the world, especially Europe. Yes, so i left Uganda, moving to England, hoping that I would make a lot of money. And that actually I had no real big plan. But the one plan was to make a lot of money. And you know, as I said, you think when you get to the airport, probably that will imply that there was a query so you hope that the Queen will be handing out money on the streets of London? I don't know. So... the grass is greener, elsewhere, apart from where you are. This belief got me thinking that if I could get rich very quickly if I left the country, and so that was my mission, I left Uganda. Immediately after medical school, I was about 21. It was an opportunity to go to Europe to England as a volunteer. And I took that opportunity with both hands because I believe this was my big break. So I started working in an organization in a place called Croydon. And this place we're looking after young asylum seekers. We had an after school club. We had a nursery, you know, and I was working as a volunteer for 30 pounds a month.

Christey 5:23

Wow. in London?!

Florence 5:27

But I have to be very quick to say that all my needs were taken care of. This was pocket money. But when you look at this money while you're in Uganda, it also sounds a lot. But yeah, eventually you'll learn that actually, this money doesn't go very far. A few bus rides, and it's done. So I quickly realized that I wasn't going to become rich.

Johanna 5:48

And just to be clear, the desire to become rich was always so that you could bring that money that you earnt back to Uganda, so it was always with the desire to then come home again.

Florence 5:59

Yeah, Bailey, say this, let me go abroad, make money and come back, and then set up my ideal place where these children and their parents will come and there will be no shame for them because they would have someone to hold their hands through this experience. But anyways, when I went, I honestly did not make any money. In fact, I came back with less money than I went with, to be exact.

Christey 6:22

Sounds like my time in London.

Johanna 6:24

Oh no, that sounds just like my time too. But I had a really good time. Did you have a good time?

Florence 6:33

Oh I had a wonderful, wonderful time. I met amazing people who are still my friends today. Amazing people who encouraged me because at that time, you're lucky they know me then because five minutes into talking to me, you know, I was going to set up a big organization in Uganda. So you'd say how are you? Who are you? And I'd say "Florence and you know, in a few years, I will have this organisation in Uganda that is looking after children with special needs.

Johanna 6:59

Oh wow, it was inside you this whole time.

Florence 7:01

I had a big fire burning. And my hosts and the people that I worked with were very gracious with me, I must have been very annoying, but they still were very good. So they were very gracious and very kind, and introduced me actually to organizations that were working with children with disabilities. They encouraged me to volunteer after I was in schools with children with disabilities, the head of that organization that I worked for actually paid for me to do another course in neuro developmental therapy in London so that I add to my skills as a physiotherapist. So yeah, it was a wonderful time. Oh, and also the other thing, I know why I was actually in London at that time in my life was for me to see what was different. I knew what I didn't want to see. So I had seen everything bad about the way children with disabilities were treated in Uganda. But I didn't have a clear picture of what it would look like. So being there seeing children with disability, riding on the bus with shiny, beautiful wheelchairs, with therapists during home visit them going to the cinema, being part of the fabric of their family, I realized that this is what I wanted. And every time I put something very nice about a child with disabilities I wrote it down. So through this network of wonderful people that were supporting a dream that I had it even started, I was introduced to a drop in center in a church, where children with disabilities would go with their parents to just have coffee and people look after their children on the site. And that actually is the first thing I did when I came to Uganda, I set up a centre where parents would come. So yeah, so my time in London was really, really wonderful. I cannot trade that for anything in the world.

Christey 8:49

Wow, that was your real university, to prepare you for Mukisa Foundation.

Florence 8:56

Interacting with parents of children with disabilities in London, they just kept saying it's too much. On Monday, you have a health visitor on Tuesday, you have a physiotherapist coming, you have a nutritionist appointment, you have a wheelchair fitting, you know, they was saying all these things were too much, and in my head, I was thinking, How I wish parents in Uganda had a little bit of this, you know. And so I wrote down all these words, house visitor, outreach clinic, all these things, wheelchair fitting, and I said I want there to be this in Uganda. I would like my parents to complain that we're too much for them, you know.

Christey 9:31

Oh, my goodness, I just got goosebumps. You wrote it down. And then you literally made it happen when you went back to Uganda, like how many people actually like oh, okay, I'm gonna do this, this and this, and then it goes nowhere, but you've actually made your list happen. That's incredible. Taking those learnings to Uganda like that.

Florence 9:51

It has been really an honor. So it has been a great journey.

Christey 9:56

So of all of those things on your list that you wrote down, wheelchair fittings, outreach clinics, drop in center, of all of these things, what is it that felt most important to you to recreate for the people in Uganda?

Florence 10:10

There’s the medical side and the actual side where we have the health and the education. That aside, which is really important for people who don't have the services, the one thing was the peer support of the parents. Because parents in Uganda felt like they're the only ones. If you think that you have been bewitched, you must have done something wrong. So it's personal to you, you are the only one. So for me to get each parent help getting a space where they could all come together and actually see that they're not alone, that other people are experiencing the same thing. The cerebral palsy might look different on different kids, but this is your validation that this is not witchcraft up and then get a name to the condition that their children has been, I think, the most profound for me, seeing my parents coming from this point, or either denial, fear or shame, to this point of accepting that my child has this condition, and then accept it, and knowing that there's something they can do about it. And then feeling like there are other people, like me, who are going through the same. And finally knowing that there's other people who can hold their hand through the situation. I think that has been the most, the biggest blessing of all the things I could do.

Christey 11:22

Oh, my God, what an incredible gift you've given them. What a relief that must be thinking that you're cursed. Yeah. And then you've somehow affected this child because of something wrong that you've done. And then just that journey of, you're not cursed. It's a medical condition. There's other people, you're not alone, and here's access to care for you and for your child. What an incredible transformation for the parents live. So often, we miss out on their experience, like in my situation, working with you and with other leaders who are working with children with disabilities, you don't often think about the situation for the parents and what they must be going through.

Johanna 12:02

I remember Florence, when we first met you, we came to one of your centers in Kampala. And on that day, you were running a session for the fathers of children living with disabilities. And it was after that session that Christey and I were like, "We need to support Florence!". Because just hearing them ask all the questions, and ask for more sessions where they could connect, it was just so powerful.

Florence 12:31

For us, family empowerment, is one of the key ingredients of everything. Because Uganda is a very patriarchal society where most men were walking away from their families, not because they don't love their children, but it's because they don't understand. How to tell them, you're dominant, and you're strong and you're big, and you know, all these things that they're told, and then seeing their children look like that make them seem weak, makes them feel doubtful of their own abilities. And as a result, most of them just walk away from their family. But getting them together to talk about these issues, and to know that they're not alone. To know that this is not something that they did, you know, just helps them process and actually support their children. But it's also the same for siblings because siblings are bullied in school. Being told you have a sister or brother with a difference is also difficult for the sibling. Also, the other thing is sibling rivalry. You know?

Christey 13:26

We know it!

Johanna 13:29

Yep! How many brothers and sisters do you have Florence?

Florence 13:31

Yeah 13…

Johanna 13:33

Oh, wow, 13!!

Florence 13:36

So the sibling rivalry in my family is a bit intense! But for the ones who have a sibling with disability. Mama and Daddy spend more time with their sibling. They're like, my mother takes more care of the other one. "Why is he 10 and he's being fed and I can't be fed and I'm 5? Why is mama always tired? Why is mama crying? Why is mama always going out?" They're going for a hospital appointment. But for the other siblings, it feels like mama is taking the other one out. And then sometimes, even the younger sibling, you have to take care of your older sibling with special needs. So then the feeling that they have, a sibling, is also very intense. So that's why you also have, not just mother's days, not just father's days, we don't focus on only the parents,we focus on the siblings as well. They come and talk about their issues. They express their needs as well and say we also want to be heard we also want to understand "Why doesn't she walk? Why doesn't she play with me? Why did she grabbed all my toys? Why is he violent? Sometimes what I wanted to do was say hello, but he grabbed me", you know, giving the parents, the siblings and all our people a space where they can express their feelings, helps them to support the one with special needs better. And for us that is very important. And I think it's one of the key things apart from the service provision that we provide that is key for our families.

Johanna 14:58

Absolutely, yeah. If there's the medical side, and there's the care side of the actual child, but then it's the whole ecosystem around that the support system for that child for that family. That was another thing that Christey I just found so powerful was how holistic your work is. So you told us that yourself and some of your friends in your spare time set up the first all inclusive school for children living with disabilities and Uganda? Could you tell us more about how that got started?

Florence 15:31

Yeah, so our children were actually getting therapy and thriving, and parents were accepting their children and then their question was, then what? do I just take them home? there is nowhere else it's a thing. So we decided to open a small daycare center where we could just sit when a kid with the kids and give them a good time. But the kids progressed, they now learned how to read and write and they were no longer needing daycare, they needed to move on to the next level of their education. So then we tried to get schools that would take them all, and most of the schools were closed to the idea of including children with special needs into their setting. So we ended up having a school of our own. So what started as a daycare became a primary school.

Christey 15:33

How's that for problem solving? The schools wouldn't accept children with disabilities into them. So you created your own school for them.

Johanna 16:27

Fabulous, Florence. I know that your vision for education is one where in Uganda, children of all levels of abilities are learning in a classroom setting together. How are you working to achieve that on a larger scale in Uganda?

Florence 16:44

We realized that we can't do it alone, so we started teacher training. So we train teachers in mainstream schools, we're calling it adopted schools. So if a school is willing to take on children with special needs, we mentor them and give them the resources they need so that they caninclude children with disabilities and other needs in their own school.

Johanna 17:02

So first of all, the obvious point that all of us in the world have different levels of abilities. So why shouldn't we all be part of a community from age five, or I'm not sure what the age of going to school is in Uganda, where it's a representation of society that makes sense, and for kids to learn and be brought out. And that's how perceptions are going to change? Isn't it around children living with disabilities, because as you say, you didn't know that there were children living with disabilities until you're 19 years old because they were hidden away, but it's so transformational.

Christey 17:38

It is, isn't it, you're actually bringing about an inclusive society, you went to London, you saw these kids in movie theaters, with families in schools and society, with their shiny wheelchairs on the bus. And now you're actually setting up a whole society that includes kids with disabilities, people with disabilities and families, it's so holistic, your work is so deep, actually changing the way society thinks. Because I imagine that these beliefs of witchcraft and curses and that sort of thing that informed the stigma that keeps people hidden, they're probably quite old beliefs that have gone through generations. So it can be really difficult to challenge something so ingrained in the culture, how do you navigate that? Do you go there and you say, "Oh actually it's a medical condition" and people are like, "oh, alright, then" or does it take time to convince people?

Florence 18:32

The one thing I've learnt over 18 years now, I have learned that modeling the behavior that you want people to adopt, is the best way to do it. For example, when we say these children are not cursed, every child is a blessing, we'll make sure that our centers show that when you come to our centers, they embrace that children are happy, the children are doing things like other children, then people start to think, oh, actually, if that child can do that, then it can't be a curse, you know, and campaigns where we bring all our children together, hundreds and hundreds of children with disabilities, and we match on the streets of Kampala, and go and have fun days and make a lot of noise around the community. And people see all these children together they're like "Ah, could one person bewitch all these people? Could it really be witchcraft? Why do they look different?" So it makes them question their own belief system and realize that actually, maybe there is more to this than witchcraft. There is more to this than punishment for sin. And then we also try to create role models among our children. So if our children are excelling in a talent we make sure that we showcase that for people to see and they say "Oh, this child who can actually not talk is a good swimmer. So there are good things in this child." So what we have decided to do instead of just talking to people about what we think and what we know, is to model that behavior, even for our parents. We have parents that come to our centers and they do not want to touch their own children because they are not in the right place themselves. But when they see us talk to the children, play with the children, carry them. One of the mamas actually said this to me after four years of my practice, and it stuck with me, she said, "I never used to bathe my child, I never used to dress them well. Until every time you came over to our home, you're requested to bathe my child, and you requested to dress them in a nice dress before you did your therapy." "for me, it made me question. If someone who did not give birth to my child can do this, why shouldn't I do it for my, for my child?" And from then she changed, and we started seeing her doing exactly that. She enrolled her daughter and her son in school, which she had refused to do before. But it all came out of her seeing us loving her children, because you know, they were saying that these children are unlovable, these children are not worth it. So why don't you show the parents that this is a precious gift that you've got, that this is a child who deserves love, deserve dignity. And we do that again and again, in everything that we do, to help the parents and anyone in the community to get on board. Because we realize that talking to them, and most people have the head knowledge, but he doesn't go to the heart. It's when you talk to the heart, that real transformation starts happening. And that's what we're trying to do with our work.

Johanna 21:20

Oh, I'm freezing cold Florence, because I've had goosebumps for so long, and all the wonderful things that you're saying? And just how transformational it is, because you're working with mothers who, of course, they love their child, but they've been told by society that there's a problem. So you're essentially showing them and then giving them permission to love their children, which I can't even imagine how that makes those mothers feel.

Christey 21:48

I love that way of leadership and changing beliefs just by showing how to do it, you know, just by doing it, not talking about it. Yeah. Reaching the heart.

Johanna 22:01

Yeah. Yes, absolutely. It's so powerful, isn't it? With the fact that your work is so complex and so holistic? Do you find it hard to measure impact, you just have to trust that the holistic work that you're doing is taking you in the right direction for your vision?

Florence 22:22

I find that it is sometimes very difficult to measure a kind of impact, especially using the models that exists. Because yesterday, we're just looking at some of our children. And we're saying this one had made a lot of progress. He had joined school, but now he has gone out of school because he got pneumonia last month, and he can't even hold the pencil anymore. You understand, for what was progress last month may not be progressing this month, but how do you record it. So I feel like the world out there needs to understand that measuring impact in the disability space is quite difficult. And sometimes not even possible. It is worth people investing in it. Because for most people, it feels like it's too difficult. It's too interlinked and complicated and difficult really to understand. But I just want to invite people on board to just come alongside us and just get in and see how wonderful it is. Because at the end of all this maze and complexity, we are children, we are parents, we are human beings, whose lives can be changed tremendously. That's what I would like to say.

Johanna 23:31

Oh, wonderful. Thank you so much for sharing that. And I think that that's so important, because you're talking about human beings. How do you measure one person's progress versus another when there's so much going on? And that complexity. So thank you for holding that complexity and having such a holistic approach so that we just have to support you, and we know that you're doing what needs to be done.

Christey 23:54

Yeah, it's not tickbox work, is it? It's a long game. It's deep. It's circular, not linear. Yeah, there's a lot to it. And sometimes you're gonna have a bad day, or a regression or something. But it's just wonderful to know that you and your team are there transforming the entire society, you're there until Uganda accepts disability and beyond. Off the back of that, now that you're actually having so much impact going from seeing the problem when you're in Uganda, then going to London and seeing a form of the solution. And then now that you have implemented the solution, and you've created all of these networks, and you're making change, and even at the government level, they're talking about disability now, like you've been so impactful already. How does that feel to stop and look back to trace the steps and be like, I've done it. I'm doing it?! Do you feel powerful? What does that feel like?

Florence 24:50

Sometimes you wake up in the morning, especially those happy times when you're saying things working out so well. You're like, yes, it's finally here. And then the next day you're going to our community where they have absolutely no services. And then you go back to this feeling of "there's a lot more to be done, we can do much more." I think right now I'm in a place of gratitude though, I have gone through all this, I know better now. And I have the platform to do a lot more. And so I'm excited about the future. I feel like that, in the years of the past have been learning and I'm learning and relearning and building things. And now I feel like now it's time where we have our model refined in a better way, and reach many more children, not just for Uganda, but all across Africa. It's possible really, if you make that type of community,

Christey 25:42

thank you so much for that was such a thought provoking beautiful conversation. Thank you for sharing your motivations and your work and how you got to where you are. We're so excited about everything you're doing. Thank you for taking the time to speak with us today.

Florence 25:58

Thank you, thank you for having me.

Johanna 26:00

For anyone listening in who is interested in learning more or supporting Florence's vision, you can visit justpeoples.org/leaders/florence. You can find these details in the show notes. To give you some context of how much your support can help Florence achieve, around 3,500 USD can enable Florence to provide five children living with disabilities with monthly medical appointments, medication and easy to digest nutritious foods for a full year.

Christey 26:36

What do you really love about your job? What brings you the most joy?

Florence 26:41

For me, especially like now we just came from a big conference, when I come back I go to my children. I go a sit with the kids and I do therapy and yesterday I went home floating, feeling like it's a wonderful day. That makes the running around and talking numbers all worth it.

Johanna 27:05

Why Give a Buck? is proudly brought to you by Just Peoples, an international nonprofit that connects givers directly with local leaders at the forefront of tackling poverty in their local communities across Africa and Asia. You can learn more and directly support the work of Florence Namaganda and other inspiring leaders by visiting justpeoples.org.