In part 1 of this interview, Patience Mkandawire talks with Thomas Hatch about the origins and initial challenges in developing Fount for Nations, an organization that has developed school, hospital, and community programs to support the education and development of differently-abled children in Malawi. Next week, part 2 of the interview will focus on Fount for Nations more recent evolution, work during the COVID school closures, and next steps. In addition to being one of the founders of Fount for Nations, Mkandawire was selected as an Obama Scholar at Columbia University during the 2021-22 year.
The Origins of Fount for Nations
Thomas Hatch: Could you start by telling us a little bit about how Fount for Nations got started. What got you interested in these issues?
Patience Mkandawire: It was basically my mom who pushed me. She loved helping people and there was a time I was taking my baby brother for growth monitoring — in Malawi, growth monitoring happens every single month for children from birth to five years. When I was 14 or 15, being the eldest, I took my brother into the clinic and we were stuck in a line from 7 am to 3 pm and all he needed to do was get his weight checked! I went back home, and I said, “Mom, that was such a waste of my time.” She just told me, “You’re not the only one who wasted your time, so maybe you should go and help out.” And so I did. I went back to the clinic, and I asked a Dr. “Why do we have such long lines? How can I help?” “We don’t have a lot of people who do triage,” the Dr. told me. “If you wouldn’t mind just weighing babies that will drive the traffic a lot faster.” That’s how I started.
I said, “Mom, that was such a waste of my time.” She just told me, “You’re not the only one who wasted your time, so maybe you should go and help out.”
After that, I started volunteering at a local hospital [one of only two hospitals in the country that offered chemotherapy] and I had a lot of time to understand why the kids were in the hospital, and I was very curious about their learning. At one point, I met a boy who had lymphoma and he told me that he was in grade four, but I found out he could not write his name — he wrote his name backwards and confused the B’s and the D’s. For me, that was so fascinating because I never really struggled in school, and here was this boy who was supposed to be moving into upper primary school, how could he not know how to spell his name? I talked to an American pediatrician there who sort of took me under her wing. She showed me things around the children’s ward. She introduced me to special needs, and she told me he might have what we call dyslexia. At that point I set up an activity center for children at the hospital. I worked with a team of UN volunteers, and we did a little bit of fundraising for it. We did a toy drive and then a book drive, and I spent a lot of time with the kids, tutoring them and giving them opportunities for play and coloring and drawing and things like that.
That was really the first step. Then I went to college and studied nutrition and food science. The hospital was in the same city where I studied, so it was easy for me to just go there to check on things because I was not doing this alone, I was doing this with the team of professionals. After college, I didn’t have a job right away, and I volunteered at my mom’s school because my mom was a teacher at a private school. There I met another boy. This time it was looking like he had autism and his teachers were automatically failing him. But I got to spend time with him, and I discovered how he learned and found he loved storytelling and drawing. I experimented by telling him stories for whatever lesson he was supposed to be learning and asked him to draw. For example for his history class or his geography class, I’d tell stories about the Amazon and the insects there and the other species, and then he would draw. He did so well, and l thought “What an interesting way to learn.” But then I thought, “If this is what it looks like in a private school, I wonder what it would be like in a public school?” I visited a public school, and I found a lot of the same drama and problems there and that really started everything. It was a combination of experiences. I volunteered in different spaces then finally, I was like, no, something needs to be done and that’s when I set up Fount for Nations, with the support of my mom and my, then, very close friend who’s now my husband. We registered the organization and wanted to focus on children’s learning and children learning differently and to use creative arts as a way to teach literacy and numeracy. After I registered the organization, I went back to the activity center at the hospital, and it became one of the places that we worked. We re-opened the center with trained volunteers and trained healthcare workers. We professionalized it because I was now more aware and more organized.
TH: After establishing Fount for Nations you worked in healthcare settings and in schools, but did you have a focus at that time on working with children with developmental or learning differences?
PM: That hasn’t really changed. I wanted to see that children who learn differently or are differently-abled can progress in school, but our scope was larger. We did programming in hospitals and programming in schools and programming in communities. And our goal was wherever a child is, they should be able to continue learning and succeed in their learning. So that was basically it…we wanted to see these kids do better in school and progress through school. We’ve been trying to achieve that ever since.
“that was basically it…we wanted to see these kids do better in school and progress through school. We’ve been trying to achieve that ever since.”
But the hospital programs, initially, were a little bit different. Even though it all started with a child who had cancer and a learning difficulty, not all of the children in the hospital were like that. For the hospital program we had to open it up. Our criteria were that the children had to be in primary school, six years to twelve years old, and the other criteria was they had to be in the hospital receiving treatment that would keep them out of school for a period of three months or more. According to the school schedule, if a child misses three months or more then they repeat the whole year, and we wanted to avoid the repetition. If they were going to be in a hospital for more than three months receiving treatment, then they qualified for our program. Kids with malaria, for example, did not qualify, because those are short treatments, but if they had tuberculosis, if they had cancer, or if they had HIV – that was also a very big deal at that time – then they could be enrolled in our program because they would be absent from so many classes. We later reduced this requirement to a month or more of hospitalization or if they were on treatments that required multiple hospitalizations.
The school program, on the other hand, has always been 100% children with learning differences because we work in school resource centers. These are special centers within the school where all the kids with different conditions come in and that’s where they get their support. In the resource centers, it doesn’t matter the child’s age or their ability, they are all put in one room with one teacher. That’s why it was such a challenge because even two kids with autism or two with cerebral palsy had very different needs. Children with cerebral palsy may have some mobility or no mobility. Some kids with autism were highly functional, but others weren’t. As a consequence, with the resource centers at the time, some of it was just the amount of work that the teachers had to put in to offer individualized learning. That’s where we came in: to provide the volunteers to reduce the student-teacher ratio. When we started, that ratio was around 45 or 50 to one teacher. We placed up to three volunteers per school reducing it to about 5 to 10 kids per teacher or teaching assistant. That’s how it was structured in the beginning, for the first two to three years of our work, focusing on strengthening the health care system and strengthening the school system to be able to support the children.
TH: What are some of the first challenges you faced as you tried to work in these different areas?
PM: The first challenge was at the hospital where I started the first activity center and in understanding the place of education in health care. There was a new leader at the hospital. He was not a pediatrician. He did not think that there was value in addressing the social-emotional aspects of patient care. He felt that we just needed to focus on physiology so we were in conflict. As one of only two hospitals in the country that offered chemotherapy, kids and their families often had to travel 400 kilometers from their homes to receive treatment. This was not easy on the families, so the hospital would admit the children for the duration of their treatment. That meant six months in the hospital, nine months in a hospital, a year in the hospital. And this is time away from school, away from socialization, away from friends, away from play, away from everything that is familiar to a child. My argument was that this affects their recovery; it affects how they respond to the medication; and, of course, it affects their parents, many of whom don’t believe their kids can get better. So, we offered emotional health care for the parents and also for the child focused on play. And we used play to explain the different conditions and to explain the process of chemo to them. We used to play to help them just unwind and not be afraid of all the needles and being in the hospital. Also, we used play for learning and for providing continuity so that when they went back into school they are not lost and they have not regressed.
Everything came to an end when we were planning a fundraising event to renovate an old building into a new activity center for the hospital because we were starting to run out of space. There was a building that they used as a construction warehouse that was empty, and we wanted to renovate it. Everything was all set, but the day before the event, there was a misunderstanding with the hospital director and he literally kicked us out of the hospital. Just like that the program ended, and Fount for Nations left the hospital. I was so disappointed, but the beautiful thing about it is we had trained volunteers and healthcare practitioners, nurses and community health workers to provide play therapy and support the children socio-emotionally. I think the program stopped for about six months, but then it picked up again and now it’s being run independently.
The other challenge we had was with schools. We worked in resource centers for children with learning differences in government primary schools and those schools had their own unique challenges like low teacher salaries, lack of training for teachers, and teachers being overburdened. Initially, we sat down with the teachers and we said, “What do you need to help you succeed? To help these kids succeed?” And they said “we need extra help; we need teaching assistants, we need materials, we need help with parents.” So, we focused on all those things.
We also asked the parents, “Is this helping?” And what the parents said was, “This is great, but there is a lot of stigma and discrimination in the communities, and we get really discouraged and really disheartened.” We had been doing a lot of information sessions with parents to help them understand the different conditions that the children had, and we wanted to help them with coping strategies. But they told us, “The problem is bigger than us.” Building on that, I wanted to help combat myths like these kids are bewitched and should be locked away which comes from the community, so we started doing a lot more community engagement and started working with chiefs and local leaders to start raising awareness around the abilities of children with developmental and learning differences.
We had an advantage for this work because in schools we started what we called “showcases.” At these showcases, kids from the resource centers would demonstrate what they had been learning. Because we used creative arts, it was very tangible, with displays of bangles, mats and color paintings among other creative projects. People were super excited. They’re like “oh these kids can actually do things!” Around the third year, we started an annual auction. We took what the kids produced at the hospital and the schools and worked with an artist to frame them, and then we auctioned them off. Part of it was fundraising but the most important part was raising awareness about what these kids can do about what they are learning. It was an educational family fun day as well as a fundraiser.
But after a year of doing everything that the teachers and the parents wanted, we realized we couldn’t financially sustain it, so we sat with the teachers again and asked them, “What works? What doesn’t work? What has worked for you, this year, and what hasn’t worked? And what are your priorities?” They told us, “We would like you to focus on teacher training and parent support.” So, we dropped the material support. We dropped the volunteer program. We dropped the showcases. Instead, in addition to providing trainings for teachers, we started advocating in communities directly as opposed to having the school as our base. That later on served us in the pandemic because we had other avenues to deliver our programming, as opposed to just being stuck in a school.
“…We started advocating in communities directly as opposed to having the school as our base. That later on served us in the pandemic because we had other avenues to deliver our programming, as opposed to just being stuck in a school.“