42: From Uganda to Unmasking Social with Enachu "Frederick" Edmos

Dive into the powerful story of  Enachu "Frederick" Edmos, a true changemaker from Lira City, Uganda. From childhood struggles, orphanhood, and witnessing the suffering of children with autism and disabilities  in the refugee campe in Northern Uganda, he’s on a mission to revolutionize education and societal perceptions. This episode sparks a call for action, ecause every child deserves a space to learn, grow, and excel to their full potential. In this episode we take a mote broader look at:

• The birth of Uganda’s first inclusive school for children with autism and vulnerabilities
• Challenges in mindset change and overcoming cultural myths about disabilities
• How poverty and food scarcity impact care and access to health services for children with disabilities

To follow Frederick's ongoing project: https://www.purefuganda.org/

Follow Unmasking Social at:

 
Instagram: https://www.instagram.com/unmaskingsocial1
YouTube: Unmasking Social: The Podcast - YouTube

Transcript

SPEAKER_00 0:03

Welcome to Unmasking Social, where we talk about building real friendships and meaningful connections without masking who we truly are. I'm your host, Sharon Baume, a speech and language pathologist with an expertise in social thinking and how it relates to autism and ADHD. Specifically with our teens and tweens. Let's dive in. Hello everybody, and welcome back to Unmasking Social. Today we have a great guest who is an actual change maker in Lira City in northern Uganda. His name is Inachu Frederick Aedmos. And Inachu and I have known each other for a little bit. We tried to record earlier, didn't work, but here we are back again full circle in May, and big things are happening in Inachu's advocacy journey. So, Inachu, my first question for you is just when did you start thinking about autism and individuals with disabilities? And what made you really hone in on it to the point where now you're 100% dedicated through Pure Wish Foundation?

SPEAKER_02 1:15

Thank you so much, uh Sharon, for that great question. And I'm so much honored to be here and speak about autism and also Pure Wish Foundation in Uganda. About your question, I first came across autism in 2002 when I was volunteering in a camp in our region. Yeah, uh, because of the war in my region that happened, that took about 20 years. So I was a volunteer in the camp and I saw how children with the autism disability were suffering in the camp and uh they didn't have proper care. Their parents did not have proper knowledge of taking care of them. Uh so in 2002, up to 2004, I was a volunteer in the camp. Then I started to learn about these children and how best these children can be helped. But unfortunately, I didn't have any training, I didn't have any knowledge. But that stayed with me in my mind. Then in 2014, I started up an organization that uh works with children, supporting vulnerable children. And my first target was reaching out to autism children and also their parents and caregivers and see how best my organization can empower caregivers to take good care of children with autism. But um 2014 and 2015, the project did not work out so well because of uh lack of funding, because we needed to do research and move in the community and study more about these children. But uh what we did is that we had a radio program that was a free, a free radio program that was given to my organization, Piawis Foundation in Uganda, for about 30 minutes. So we could go on the radio in 2015 and talk about autism and how special these children are. And um if uh they are given um proper care like other children, they can also become great people. Also, so it went on well. It was a six-month program, so we received good feedback from the community. So that is how now um I developed the heart together with my team here about uh doing something more than what we did on the radio, creating awareness about autism and how best uh uh children with uh uh autism disorder can be taken care of. Now we thought of scaling up our project to reach out to a bigger number of the children because northern Uganda uh has so many cases of children with autism disability due to uh poverty in the region. These children are not taken care of, they're not given education, they don't have any social support, emotional support, no all the basic support needed for a human being to grow and also live a social life like other people are not given to them. And unfortunately, we come from a cultural setting, a cultural belief that people believe that if a child is born with autism, that child is cursed, that child is demonic. Yeah, that child is not considered a child in a family, is not considered someone who could who can grow and become somebody useful in the community, is considered useless. So we realized that we we needed to do a lot of mindset change program in the community. So in 2022, what we did is we started up a program where we could go to the villages and meet uh the stakeholders, the local stakeholders in the communities and talk to them about autism disorder and how best they can convey the message down to the people in the community because we didn't have enough resources to move to every community, to reach out to everyone and talk to them. And we didn't even have another opportunity for a free radio program that we had in 2015. So we needed to pay. Yeah. So we thought of doing a mindset change awareness program. But then also we realized that um due to lack of funding, we are not reaching out to the bigger number that we thought we could do. Then we also thought of um coming up with an educational program because uh we moved around schools and we realized that these children are not in school. We did a simple study and we sampled 35 uh schools. These are primary schools. I think in Europe or in the USA can be called elementary schools. And we realized that these children are not in school. In these 35 schools in the community, none of the children in school was found to be having autism disorder. So we realized that these children are kept at home, not with the proper care. So we decided to do a study on the internet and find out if these children can be put in school. And if they have to be put in school, what are the things needed? So from there, in 2022, we did the community outreach exam uh 25 last year. We came up with a school. Yeah, uh we came up with a school that a school that is uh inclusive, not only for abled children, but a school for every child. And with a theme that leave no child behind. Because we wanted all the children to be in school, whether with the autism disorder, whether with the other vulnerability that they have. Yeah, we believe they can all come to school, they can all learn. So that was the birth of uh Pure Waste Junior School. We call it Pure Waste Junior School because they're a school for children that have never had an opportunity to go to school, but with great focus on disadvantaged children like autism and then children with other vulnerabilities, like uh others have disabilities in maybe they cannot walk well, they cannot talk well, maybe they have some other disabilities or deformed in their body structure. So we thought this school could really help a lot. And meanwhile, at the same time, we are doing a lot of mindset change because it's still a big problem. So what happened is when we when we opened up this school, because last year we got the school, we paid the school for four months, and uh we opened up the school this year. We are, I'm sorry to say we are happy, but uh we are glad to see that uh we received three children that came to school with a disability. One was a child with autism. Now the challenge came to our side on our side. We didn't have enough human resources, enough teachers who are trained to this kind of children. Now, right now we are trying to move around and see if we can have teachers with special training in teaching autism children because we have teachers with teachers who can teach deaf children. We have other teachers that can teach this other ordinary other children that are okay. But we have a challenge. We don't have a teacher who can teach autism child. Uh autistic child. You know. Autistic child. Now, the child that came to school, we had a teacher who was trying to do an online study to see how best she can help this child to learn. So we realized that we needed a lot of play materials.

SPEAKER_00 8:46

Yeah, play base.

SPEAKER_02 8:47

A lot of play equipments in school. But because of um still the challenges in our finances, we were not able to put every basic materials, play materials in school. But I'm glad that this child stayed with us, stayed to the whole uh, and finished the whole term. Then what we did is that uh we involved the mother because she's a single mother now with three children and one is autistic. So now we we're now talking to the mother right now. We're trying to empower the mother using a study that was done about 15 years ago that we came across, I think, was posted by UNICEF. And uh so this is what we are doing. But um I'd like to let you know, Sharon and everyone that will watch this video. We have received calls from the community for the last two weeks about people wanting to bring their children to our school. And these are autistic children. Yeah. We feel like we don't have enough training, enough knowledge, but um we are trying to do some learning on the internet because we realize it's a problem it's a problem in the whole country. We have children, we have teachers who can teach deaf children, blind children, but we don't have many teachers who are trained to handle uh autistic children. But we want to be the first organization offering education to children with it. So this is what we're doing, and this is how I came about the children with the um uh autism spectrum disorders, way back when I was in the camp. I saw and I realized that something can be done to help them. Yes, thank you.

SPEAKER_00 10:21

Fascinating. I mean, Arthur, thank you so much for explaining all of that. This is a long journey. And when we spoke last, actually, we spoke a number of times, um, but I knew that you had to be on here again because when you came the first time, right, things didn't work out. But um, when I had spoken to you originally, like the first time, we were so excited together because the final touches were being put on the school, and now the school's finally open, and it's so great to hear that people are coming. And not only people are coming, people are asking to come. Like it's not that you have to go locate them. Their mothers or their family caregivers are wanting them to come. But what I'm hearing from you is a few things. One in which is that you were in this refugee camp and you saw that individuals with disabilities, due to the culture, were just not being paid attention to. Or if anything, I know you mentioned at one point um when we spoke before that sometimes you would notice a kid is in school, but then they're taken from school because there's this idea that there's some mystical thing at play with these children, even though you and I know that these individuals have special gifts and talents and have so much light to bring onto the world.

SPEAKER_01 11:29

Yeah.

SPEAKER_00 11:30

And that's really difficult to challenge. And that's why it's interesting to hear you speak about mindset change and mindset growth. It's so hard to change people's perspectives, but getting on that radio, you know, was such a clever idea so that people could start hearing instead of keeping their child at home. However, I can imagine that there is an obstacle of perhaps there's still fear by some of these parents, perhaps, in terms of getting their kid in school and what the what the ramifications might be in terms of the local authorities, will they get in trouble? Uh, I know that you're trying to work through that, work through those obstacles, but is that still something that's challenging in terms of fear of the authorities not wanting them to educate their child?

SPEAKER_02 12:15

Yes. Um, thank you, Sharon. We had that, we had that uh scenario. I remember in one village where um the mother told me that um their local leaders in the area are telling them that these children cannot do anything. They are too vulnerable and they cannot go to school because their mind is underdeveloped, they cannot learn anything. So the best thing is to just let them be there and not even take to take the to waste time to take them to the hospital for medical care because they have a bad luck to the family. And also they they don't even take it to school to join with the other abled children, they are going to cause issues to other children and because of their nature of living, because they need proper care, no one's going to care for them at school. So it's not, it's going to be like a disgrace to the family if the child is taken to school.

unknown 13:15

Right.

SPEAKER_02 13:15

It's going to be a big shame to the family. Such incidents we believe is still existing in some communities because we witnessed this by ourselves when we went to the community. And that is why right now, we as the organization we are trying to develop uh what we call um child responsive engagement strategies. We did a study on that and realized that um it was done in the Western world, but we are trying to come up with our own strategy, local strategy that can work in our community.

SPEAKER_01 13:50

Adapt it. Yeah.

SPEAKER_02 13:52

Yes. Yeah, that can be adaptive, and we want to do this so that uh our school can be seen as a turning point for these children. And also many can bring their children to school, and also many parents and caregivers can learn the best way possible to help their children. Because we believe with this strategy, once we are done with it, we are going to find a way of uh either using the radio, doing community engagement outreaches so that we reach out to every parent and every caregiver so that they can treat these children, they can change their mind and consider these children their very own children, and also special children with the special talents and gifts. Yeah. So we are trying to develop this and change it to our local context so that people can understand and also with our experience that we have seen in the community, we're trying to integrate so that our this strategy can work here. Yeah, this is what we're trying to do.

SPEAKER_00 14:50

I mean, I think it's phenomenal, just the fact that you're doing so much research. You guys should get a PhD at this point for all the research that you're doing, because I think that what happens is that sometimes people get very comfortable, especially if you're in the education system for a long time. It's very easy to just kind of go with the flow, not make any changes. And because of that, systems unfortunately fail because they're not adapting to a new reality. Even here in New York, right? Sometimes things are changing, things are rapidly changing, society is changing, right? Therefore, education needs to change. But that mindset growth is something that I relate to where it's very hard to change people's minds, especially when they have this fixed mindset of what things should be. And circling back to what you said about how you notice all these individuals that were just being overlooked or treated like they were nothing, like second-class, valueless, worthless citizens, and then allowing the parents to see that actually they do have these strengths. I think that's great. I think it's a testimony to how you're able to speak to parents. And your research is correct. I mean, all the research and all the things that I've observed working in the schools for the last 15 years is that parent involvement and parent buy-in is probably the most important thing because they're only in school for a certain amount of time, and then that's it, right? And then what's happening? Are they getting mixed messages at home? So it's it's it's quite challenging across the board because parents have different situations going on and maybe not enough time, maybe they're stretched for time because maybe they're working three jobs. So there's a lot going on. And you also touched upon something that if you don't mind elaborating on, how you were so inspired at that refugee camp, right? And you have such a big heart, you have so much empathy, you want to help children at all costs, no pun intended, because you need funding. Is there something like just in your journey, like as you were growing up in Lira City? Because you grew up in in Lira City, right?

SPEAKER_02 16:53

I spent um uh about 12 years in my village.

SPEAKER_00 16:59

Okay.

SPEAKER_02 17:00

Because I came to my city when I was 12. Right now I'm 39, so I've been in the city that's like.

SPEAKER_00 17:06

We're the same age.

SPEAKER_01 17:09

We're the same age.

SPEAKER_00 17:10

Yeah, no, I feel now I don't feel old. I feel okay now because we're the same age. Okay. It's hilarious. Okay. Oh, but no, I'm not excited for F40, the big 4-0.

SPEAKER_01 17:21

Ah, okay.

SPEAKER_00 17:23

It's okay. Life is life, life is good, right? So so so basically, so you when you were growing up in that village, I was there anything that made you feel like more compassionate towards because you have a big heart and a lot of compassion. And I've always seen that the people with the most compassion are usually people who have been through difficulties and struggles themselves that made them have a bigger eye towards those who are vulnerable.

SPEAKER_02 17:48

Yeah, um, I think the first thing is my background, my personal background. I lost my parents when I was 10.

SPEAKER_00 17:56

Wow.

SPEAKER_02 17:57

Now I also happen to be the only male child in a family of uh four girls. So according to African tradition, if you are the male child in the family and you're the firstborn, and I also happen to be the firstborn in the family. So now you take over the responsibilities of your parents when they're when they're dead. So I became a uh a parent at a very tender age, very young age. I didn't even know what to do. So um, what I did, I looked for my relatives there, and I requested them to take care of my sisters. And while I tried to live on my own because I felt I had a lot of responsibilities and I needed to also to go to school. So that's why I lived my life. But that experience that being an orphan, I saw the problem, the challenges, the pain children without parents go through. And also in our village, there was this young boy that was born crippled without hands. Yeah, without hands.

SPEAKER_01 18:56

Yeah.

SPEAKER_02 18:57

And also he was artistic because um every time he could not speak well, Liva could just, you know, crack flow out of his mouth every time, and he could even pull, could he could even poo on himself. One time I was going to dig in a garden of another person for money because he needed money for my survival, so I could go to people's garden and dig and make some money. So I saw this child, this this boy had pooped on himself and uh he was just rolling on his poo. And uh and his mother was just looking at him. You know, and he's here dirty and is being abused by the mother, the very mother that gave birth to him. And uh I saw that I remember very well that I cried. Tears came.

SPEAKER_00 19:44

Of course, Anachu. That's I can't imagine you not crying. I mean, you're such an empathetic person, and that sounds like such a difficult thing to watch, you know?

SPEAKER_02 19:53

Yeah, it was a bad experience for me in my life. So when I moved to our city from the village, I was now 12 years old. And because I came to to study, because uh there was an organization here that could help orphan children study. So I got an opportunity to study for four years that helped me to go through my uh I do not know in US how it's called, but here we call it secondary education, right?

SPEAKER_00 20:18

From elementary, you go to and then middle school sometimes, sixth to eighth grade, and then high. It sounds like high school, right? Before before university. High school?

SPEAKER_02 20:28

Yes, maybe um to go to high school here, you need to study for four years. From from elementary, you go for four years, then you go for more two years. From two years, you go to you go to college. So the two years like high school here. So it yeah. So I didn't go to high school. So yeah, because I didn't have an opportunity, the money needed for the high school.

SPEAKER_00 20:49

Right.

SPEAKER_02 20:49

Right.

SPEAKER_00 20:50

So everything's expensive and nothing's given for free. I think people don't understand that here where I come from, right? Because over here the government subsidizes certain things or pays for public education or will try to help out. It sounds like over there the government doesn't really give you money for education. So unless you have a lot of money, you won't be educated, correct?

SPEAKER_02 21:11

Lately, government came up with a program called free education for the government schools. But now that the challenge that we have is because of the corruption in the country, government does not give enough money to these schools. Or even if they give, this money does not reach the school, it's eaten up by somebody somewhere. So now these schools end up being too weak and not good schools. So people don't like government schools because they're not good schools.

SPEAKER_01 21:38

Yeah.

SPEAKER_02 21:38

You can go to that school and spend a lot of time there, but you end up getting nothing. So people prefer going to private schools, which is too expensive, but with a good quality education.

SPEAKER_00 21:49

So people complain about that here too. Like some people say, Well, what am I getting at a public school, you know, because it gets a bad reputation. Different. It's different, obviously, than when you are. But and then they feel like, oh no, should I change you know, send my child to a private school even though I can't afford it, you know?

SPEAKER_02 22:06

Yeah. So when I came to town in 2012, I joined school for four years. Every evening I could do as I'd do some job to help me get some money for survival. Then after four years, I joined a volunteer service in the camp. Now I stayed. I could not get a good job because my education was not to the level of getting a job. So now later I joined a volunteer program in the camp. Then I served in the camp from 2002 to 2004. Yes. And from there I started building up, you know, the vision for helping children, starting up some initiative to help children come, but I could not study it. So what happened is later I got an opportunity to go to a Bible school, which was a free school. Yes.

SPEAKER_01 22:52

Nice.

SPEAKER_02 22:52

Yes. And then I did a certificate and a diploma that took me three years. And then later I came back and started the organization in 2014.

SPEAKER_00 23:03

That's amazing. So you had a whirlwind of an adventure, and you're only 39 years old. I feel unaccomplished compared to you. Just because of all the things that you've been through, all the things that you've done. I mean, wow, like that's a lot. And it seems like everything moved really quickly, but also was all interconnected in the sense that one thing led to another, and now you're at the school, but it all came full circle to what really needed to be done, which is a specialized school for individuals who can come to school. And I think about what you said about finding individuals that specialize in each area, whether it's deaf, individuals with disabilities, individuals who are autistic. And the thing is, is that I think that there aren't enough schools like that just in the world where they mix a lot of different needs together, like somebody who's deaf, somebody who's mute, somebody who's autistic, somebody who's dyslexic, and put them together. And the thing is, I think there's something powerful in that. And maybe some people may not agree with me. Some people like to separate, and special, you know, based on you're autistic, you're this, you're that. But there's something nice about being around people with different strengths and weaknesses, right? Like almost like in a it's a peer supportive environment, no?

SPEAKER_02 24:13

Yeah, uh, what you're saying is very true because uh when we were told in a community by this mother of autistic child that uh the community leaders say said this child cannot be mixed with other children in school because of his uh uh disability. Um, we also realized that uh it's a matter of mindset because, like this one girl that uh is in our school, we saw how she's really adapting and she's learning because the other children, the other abled children realize that uh she needed help. And they are they're too friendly to her.

SPEAKER_01 24:53

Yeah.

SPEAKER_02 24:53

Yeah, yeah, they're too friendly to her, and they're helping they're helping her to catch up. Another challenge is that uh they cannot understand her speech very well.

SPEAKER_00 25:03

Okay.

SPEAKER_02 25:04

Yeah, yes. But we see them playing together, we see them running around the compound. You see, so that we we realize is also helping this child to also learn and feel special and loved by people. Because the first thing I think we want to do in our school is one, showing love to these children, making them realize, yeah, making them realize that they are also special like other children. If they can go to the same school with other children, they are they are then they are special too. Secondly, we don't want them to be discriminated because of that disability. You put them separate somewhere to make them feel like they're useless, that no, they're no human beings. That's not the picture, that's not the feeling we want to create. No. We want them to come and mix up with the people in a community. We want them to have the experience that everyone is having so that uh at the end of everything, they can also feel bold. They can also feel accepted, and they can also feel loved. And we think by this we this will help them to build that self-esteem.

unknown 26:07

Yes.

SPEAKER_02 26:08

For them to become yeah, for them to become great in future.

SPEAKER_00 26:11

Yeah. And I think that's a big thing, the C-word, confidence, right? Like a part of this all is confidence. You know, if it's individuals confident, they can accomplish so much, but if they don't have any confidence, it's gonna limit them. And to feel empowered, that they can support each other and knowing that they have different strengths. Like they can look at someone who has a different struggle and say, hey, I don't have that struggle. I'm strong in that area, you know, I could do great things in that area. However, I can support this individual at the same time. And so I always love the idea of peer support because only peers can truly understand each other, I feel like.

SPEAKER_01 26:44

Yeah.

SPEAKER_00 26:45

I think that adults can only understand to a certain point. But yeah, so that brings me to the next kind of portion of this. So I know there's a lot going on in terms of trying to build the school, and you are setting up so many things for these children, like in terms of accommodations. Are there any specific accommodations that you can speak to that you found helpful in terms of individuals with the mobility issues, individuals with the social issues, autistic communication, whatever it may be? Were there any like like ways you design the building so that everyone is accommodated given the resources?

SPEAKER_02 27:19

Yes, uh thank you, Sharon, for this great important question. When we took over the building, like I said, we rented it. We realized it was built for not for disabled children, not for children with disabilities. We realized it was built for abled children. So we changed the design. Yeah. The whole of 2000 from um from August to 2015, we spent all from August 2015, 2025 to December 2025. We spent it on redesigning the building. Um, and what we did, we put a ramp, ramp on every door, every single door connected to the veranda, to the pouch, so that a child with a disability can access the classroom. Easily.

SPEAKER_01 28:09

That's basic. Yeah.

SPEAKER_02 28:10

And also we went to the toilet, then we also put the same ramp on every toilet door so that uh they can also access toilet with the help of uh um staff that we have employed, we call them matrons. These are women that we employed from the community that helps uh um their work is to help children uh access anything they want to access that they cannot access by themselves. So now we even let them, we even made it clear to them that uh one of the responsibilities will be helping these children with the vulnerabilities with the disabilities. So now I'm so happy that uh these two women are doing a great job. And uh yes, so our school is now redesigned to accommodate any child with any disability.

SPEAKER_00 28:59

You know, and that's amazing because you've you've you've definitely been influenced by the West a bit and also your creativity because you're setting up accommodations that are specific for each individual, the physical, the emotional, the everything in between. And so this is definitely a very inclusive environment, right? So the word inclusive, right, is still a buzzword, but it's not, you know, something that everybody understands. But now with these parents, so are the mothers more comfortable now because of all you know that you've done for the kids? Do they feel comfortable sending their kids here? Are they able to, you know, understand what they need to do with the child at home?

SPEAKER_02 29:35

Yeah, um, like I said, uh the mindset change is still highly needed here. Yeah, the few mothers that are feeling comfortable sending their children, but we saw from this one mother that brought her child, yeah, the daughter, she had so many questions. And she was feeling that uh the child is too vulnerable, cannot live by by her own. She cannot stay in school.

SPEAKER_00 29:59

Right.

SPEAKER_02 30:00

Yeah. Yeah. So what we did is that we assured her uh of our capabilities of uh handling children with such uh disability.

SPEAKER_01 30:12

Right.

SPEAKER_02 30:12

And also, secondly, we let it clear to her that uh this child needs to be in school, this child needs to learn like any other child, and and also this child can become somebody great in future if help at this early age. Early intervention.

SPEAKER_00 30:30

Yeah, you're practicing early intervention, yeah.

SPEAKER_02 30:33

Early intervention, we believe it's the best for them. It is yeah, even the mothers that are calling us, yeah, their first question is can this child be handled well in school? Can this child really learn? Can this child really so they somehow they really feel there's opportunity for their children also to learn, but again, they have some fear in them because they they are just looking at how they handle these children at home, which we believe it's not properly handled well. They are not properly handled well and at home. So they have fear in them. And also removing the mindset of uh stereotyping these children, uh, giving them, naming them cursed or uh demonic. I think it's also another another thing that we need to work on so that these children are looked at as normal human beings, like uh, but like in the family. So I think because of that, they have a feeling that uh the best way to help these children is just to let them at home. They stay at home, and then they concentrate on these other abled children. So, but we believe the mindset change is number one in this in this struggle, in this uh movement, I could say.

SPEAKER_00 31:50

Yeah, no, it isn't movement, it's a huge movement, what you're doing.

SPEAKER_02 31:53

Yeah.

SPEAKER_00 31:53

You're totally like overturning what people in your villages, in your area, in the city have believed.

SPEAKER_01 32:02

Yeah.

SPEAKER_00 32:04

The belief systems are slowly changing. And in terms of, you know, the parents, it's interesting because I feel like that's such a common thing, even here, where a lot of parents are concerned if their child is in a very specific place with other individuals. A common thing that parents worry about, this is just around the world. We're all human, right? Is that are they gonna regress? Are they gonna get worse if they're around other kids with disabilities? Maybe they should be around individuals that are don't have any disabilities so they can progress. So it's just a common thing. But of course, we know that when students have profound challenges, it's important for them to be in a very specialized environment because otherwise they're not getting that specialized attention. But I do see that you're there's there's another struggle here, which is that the mother can be on board, right? The mother is uncomfortable. It's normal that, you know, you just started the school. Of course, they're gonna express concerns and then they'll get used to it, hopefully. But then there's you said there are other members of the family, right? This is a big mind shaft shift. You know, the mother might get on board that, okay, this is not a curse, but then you have to slowly help, it sounds like not just the mother, but the whole family system, right? So that seems to be extraordinarily challenging, right?

SPEAKER_02 33:18

Yeah.

SPEAKER_00 33:19

Yeah. So but you do do a lot of trainings with everybody.

SPEAKER_02 33:23

Yes. Um, we do a lot of training with people, but like I said before, that uh we cannot go to every person in the community because it needs resources to do that. But again, we believe that uh through our local registrations that are here in Lira, we believe that we can reach out to so many people and we can change so many minds, mindsets, so that these children would now be accepted in the community and they can easily go to school and also access other social services they need, like other children, and also basic support that they're supposed to get. Because we even under we even realized later that uh even medical help, medical service is not given to these children like this, like the way other children without disability get medical services.

SPEAKER_01 34:13

Wow.

SPEAKER_02 34:14

Parents don't take them to medical facilities when they're sick. Most parents prefer treating them at home, self-medication.

SPEAKER_00 34:22

Is that fear-based too, bringing them out into the public?

SPEAKER_02 34:25

Yes, we believe that some parents feel ashamed to bring their children in public. They don't want people to know that they have an autistic child. You see that? So that's also another area that we realize of late that we need to put a lot of emphasis on it, a lot of energy, so that these children can be taken to medical facilities when they're sick. These children can not be discriminated because of their disability. And another thing that we we also learned from the young girl in our school is that uh every time when it's coming, because we provide lunch in school, we provide breakfast and lunch in school. So you realize that when it's time for breakfast and lunch, this child feels so happy, gets so excited, and eats much food. And this is tells us that at home, this child is not given enough food.

SPEAKER_00 35:18

Yeah.

SPEAKER_02 35:19

Yeah, because of the disability. Maybe the child takes time to eat. Maybe when the child is eating because of sin in school, when she's eating, she becomes dirty. Maybe because of that. So we realize that uh this could be also a problem with other children in the community with the same disability. Maybe they are starving. They're being starved by their very own parents because of that disability.

SPEAKER_01 35:43

Yeah, which is Yeah.

SPEAKER_02 35:45

Yeah, we also realize that uh this can only be tackled if we do a lot of sensitization to change their mindset so that these children can be fed well. They can also be given good food like other children do.

SPEAKER_00 35:58

And I wonder if, because food is scarce in in some situations or they're not being fed well, the food could also be an incentive, right? That you use with them in terms of getting them to complete things, right? They get food as a reward almost. I don't know if that's something that you guys do, but it seems like food really speaks to this population, right?

SPEAKER_02 36:15

Yeah, uh, you're right. We have scarcity of food uh because uh of the poverty in our region. People depend so much, about 70% depend so much on farming. But unfortunately, even after investing from their gardens, they sell it off because they don't have money. They need money. So um about uh because then there was a study done last year by Uganda National Bureau of Statistics, and they realized that in our sub region specific, about 65% of people are not able to afford three meals in a day, and some of them not even two meals in a day. So it tells you the level of poverty, and it also tells you how these children with this kind of disability are treated because the family is poor, there's not enough food in the family. So I think they're not considered like other children do, like they do consider other children. So that's also another issue that I think uh we are grappling with and uh needs to be addressed, but will take a little bit of time.

SPEAKER_00 37:21

Yeah, and everything will take time, and on that note, I just want to ask you one final question because it sounds like this is the first, congratulations, the first inclusive education school in Uganda in Lira City. So that is a huge, huge move forward, which seems like there is hope. Parents are becoming more educated, people are feeling less cursed and more leaning in more to the strengths that could be powerful for the future. So, what is your hope in the next five years in Lira City where you really feel connected to?

SPEAKER_02 37:54

My hope is if we get supported, if we get funded, if we get enough resources, my hope is to change totally, create a total mindset change in not only Lira City, but northern Uganda as a region. And also my hope is to see that these children are put in school, not only our school, but also other schools. And third, my hope is that other schools can also adapt this system and learning how to care for children with disabilities and also opening doors for children with disabilities to access their schools for learning and training. And also, another hope that I have is that the government should come up with a policy. I did not tell you about that, but uh two months ago, that was February, I was really happy to be invited to attend Education Policy Week of our city.

SPEAKER_01 38:51

Wow.

SPEAKER_02 38:52

And I raised, I raised this in in the meeting. I told them how children with disabilities, mostly autism, are being neglected, being undermined, and how they also need to be in school and how schools need to adapt or change their system, which is conducive for children with disability to access school and learn. Absolutely. It is what yeah, it is what I put before the authorities. I know it's also going to take a because it has to go through so many channels to reach the national government. Of course, but I'll never stop, yeah, I'll not stop talking about it. Any opportunity that I get to meet these stakeholders, I'll keep telling them about this. So my hope is that all the schools, whether public school, private school, and my hope is that they open doors to these children. And another hope that I have is that uh government should come up with a training program for teachers to learn skills on how to handle uh children with disabilities. Because we have very few teachers, and from these few teachers, many of them are teachers that can teach deaf people, they can teach uh blind people, but they're not able to teach uh children with autism. So I think it uh the government needs to bring a training for this kind of children also.

SPEAKER_00 40:10

And you do have hope that the government will slowly start to do that, right?

SPEAKER_02 40:14

Yes, I believe one day these things are gonna change. The government will do this.

SPEAKER_00 40:18

So are you ready to open up your next school yet?

SPEAKER_02 40:22

Yeah, we're supposed to open up. We're supposed to open up the new term. Yeah, we're supposed to open up the new term on the 25th of this May, but right now we have the challenge of uh renewing our rent for the school. And then we also have a challenge with our water. We don't have a clean water in school. Right. We still buy water from uh yeah, then also supporting teachers. We have these three challenges that we're really grappling with and uh right. It's not easy. Yeah. So we need to renew our rent this month.

SPEAKER_00 40:52

Okay, so on that note, where can everybody find you and find the resource page? Maybe people can donate to help you, you know, continue to grow and develop so that these students are supported. Where is the best way that people can access?

SPEAKER_02 41:06

Yes, we have a website for Pure Wish Foundation Uganda. Then on the website we have the donate button, and every donate button is linked to our fundraising campaign on GoFundMe. So when you click the donate button, it's going to take you to another page on GoFundMe. And there you can donate any amount you want to donate. And because every single amount donated will go to supporting these children, supporting teachers, installing clean water in school, paying rent for the school.

SPEAKER_00 41:35

So that's yeah.

SPEAKER_02 41:36

Your donation will change a life in Uganda.

SPEAKER_00 41:40

That's fantastic. I mean, Nacho, you know, I'm I I think the world of you, I really believe that you have done so many things that so many others just would never do. And and just see you keep moving forward and you keep developing things that are so not in within the culture, but you still are just kind of overriding all those stereotypes and trying to debunk all these myths. And you have such good insight into what the children need, even though you know you're doing it based on research and the West and this and that, but you're using all the things that everybody else is using with these students that's that seems to be working. So I just can't thank you enough for being on here and for sharing everything that's going on, shedding a light on, you know, what's going on in the East as well. And you know, I had somebody from Pakistan on here, and it was the same situation, you know, the same kind of struggles of the mystical, the mother being cursed. And I think that we owe it to all of these students or these children rather, that to not not fall into that category of cursed, but rather blessed. So thank you so much, Inachu.

SPEAKER_02 42:39

Thank you. Thank you so much, Sharon, for your time and this opportunity given to me and the organization and the children in Uganda, mostly uh children with the uh Hot Zoom. I believe that this program is really the beacon of light, because if the world can get to know about these children in Uganda, then this is really great. And thank you so much for the initiative. May God bless you.

SPEAKER_00 43:01

My bless you. May God bless you too, and God bless everybody there that's working so hard.

SPEAKER_02 43:06

Thank you.

SPEAKER_00 43:08

Thanks for joining us on Unmasking Social, where we neurodiverse advocates and those who support them. Explore how real friendship begins when we start showing up as ourselves. If today's episode resonated with you, please share it with a friend, leave a review, or follow me for more conversations that provide information on neurodivergent ways of thinking, communicating, and until next time, keep staying social.