Unseen Possibilities : Living with Intellectual Disability in Sri Lanka

Hello and welcome to another episode of SH, the talk show. Uh, today's episode is going to be short and edited a little differently from what you have seen in the past. And we are tackling a topic that has been indirectly something that I've been familiar with for a long time and really wanted to talk about. And that is the subject of intellectual disabilities, or people living with special needs. Sometimes we call them differently-abled. Something that has made me very curious is the fact that a lot of Sri Lankans don't really know, uh, who these people are or what they're capable of. And we kind of focus so much on their disability that we forget to think about, what is their ability?

So today, we're here at, uh, the Shirani Joseph Vum Foundation, which is a center in Colombo that, um, it's not a school, it's actually a training center or a or a capacity building center where they help and support people living with intellectual disabilities, uh, to build their skills. They upskill them, they help them find employment, and they create employment opportunities, which is something that I didn't know existed in Sri Lanka. Because a lot of the time, we, uh, tend to sort of, uh, believe that when a child is born with special needs, that that child's fate is sealed and that child will be dependent for the rest of his or her life. Um, and that a family would have no option but to sort of, uh, keep that child away from society and protect that child. And there's a lot of stigma, there's a lot of, uh, misunderstanding, a lot of disinformation around this subject of what is it like to be a person with special needs and what can we, can a person with special needs actually contribute, uh, to their country and to their community and to their families?

So with me at the Shirani Joseph Vum Foundation, where we are having this episode, I have two very special guests, and that is Nali and Hashan. And, um, I'm going to start with [Music] SF SJ SF SJ SF. Okay, so coconut sh, coconut sh. Okay, okay.

So right now, I am seated again. This is, as you can see, we're shooting on a different day today. And, uh, we have most of the, uh, members of the Shirani Joseph Vum Foundation. Would you call them members or, uh, trainees? It's something we are working on actually to find the word that, like, you know, really captures the spirit of this place as well as their contribution. Yeah. Okay. So the trainees are here today, which is why we thought we need to do, uh, a little bit more on a different day to shoot, to show you exactly what happens here, uh, so that you also can experience this yourself. And it's not just us talking about something, you can see what's happening. And to tell us a little bit more about, uh, intellectual disabilities and how, as a society, we do need to, uh, be more sensitized and be more educated on people living with intellectual disabilities, I have, uh, the lady who's running the foundation, which, who is Pina. Um, but you didn't start this foundation. So if I can get a little bit about the history, how did this place come to be?

Right. So, uh, my mother, um, she trained as a speech pathologist and worked as one in the UK. She returned to Sri Lanka in the late 1970s, I think in 1979. And when she came here, there were no other speech therapists here. There was very little understanding of any sort of developmental delay or disability. Um, she, uh, started, uh, assessment centers and and speech therapy clinics at Lady Ridgeway Hospital, General Hospital, and she went all around the country, actually.

So were you around as a child or anything? I was born in 1983. Okay. So, so I mean, my entire life with her has been, you know, being taken from one place to the other because she, her, she was very passionate about her work. Uh, so I would sit around in the corridors of Lady Ridgeway Hospital. I'd sit around in the corridors of, like, you know, the Dental Institute in Kandy. I'll sit around in Karapitiya. You know, it's okay. Um, so when she got here, she found that, you know, there really was no understanding. There was a huge amount of stigma. There is still stigma, but maybe not as much. And, you know, she's, she'd told us stories. She'd, uh, be in villages, uh, doing an assessment clinic or something, and she'll hear about a child that's kept in a cage or tied to a bed. Right.

And have you seen that sort of thing still? I haven't. I mean, Colombo is definitely very far from that, or the, you know, the nearer areas. Um, I talk to people whenever I travel and I ask, you know, do you see this sort of thing? Does, do all people with, you know, special needs go to, like, some level of schooling? And outside? I mean, I've not seen it with my own eyes, but they say no, they're kept at home. They're tied up at home. Yeah. I mean, because, you know, if you don't, uh, remediate as necessary, you can, some of the people will develop behavior issues. And, you know, how do you cope with that? Right. And if you don't know how to cope, some of these families are single-parent families. Um, our service population, we, uh, cater across the board to, like, you know, the entire cross-section of society, but we also focus a lot on, uh, disadvantaged communities. Um, and there are, you know, there are lots of family problems, uh, single parents, very low education, sometimes drug addiction. Um, and, you know, you try to keep the child physically safe. So what do you do if it's a female child? You, you, you know, make sure she can't get out of the house while the mother is working or something like that. Right. So that we have seen in Colombo. So stuff.

So when you were growing up, going back to when your mom actually started running this place and all that, now tell me a little bit about you. Because I know that this is, yes, it was her passion and her vocation, almost, or her mission in life, but it wasn't yours. No, no. So I mean, I grew up very, very close to this organization. She worked in the hospital setting, uh, for a decade or so, and then she founded the RCCI, which later became, we renamed it in her on her last year. Um, so she wanted to have more of a community center for, um, the families to have a sense of belonging, actually, to be included in society. And it, I mean, it's not the current inclusive model that we have, but she wanted to give them a place to be. So that's how this organization came to be. Um, I worked here as a, as a child. I was their first art teacher, first cookery teacher. Um, but I, you know, I wanted to be a scientist. So I studied physics and then neuroscience. Um, uh, but I was always very interested in social issues because that was very close to, you know, how I was brought up. Management of organizations. So after grad school, I actually worked as a management consultant. And then in 2014, my mother was diagnosed with cancer. Um, she didn't really have much of, I mean, I think she had her idea of a succession plan in her head, which is the assumption that her daughter would deal with it. Um, but, uh, her board asked me to help on on the board. And that's how I actually, uh, got into this in a sort of, like, um, managing the place kind of sense.

And what made you want to work in this space? So I got involved with, uh, SJDSF during COVID. Okay. And that was a time when everybody was working from home. And, you know, I got approached by somebody asking if I was able to provide some training for teachers. So that's, that was when I got initially involved. And then when I came here, so SJDSF was run very much, I mean, we were the RCCI at that time. So it was run very much like a school. So there were students in a classroom, and, you know, they ranged from, I don't know, three to maybe 40. So came with a backpack and, you know, books. And so there was a very different kind of setup. Um, but over that time, the institution was also changing because Pina had kind of taken over and she wanted to do things a little bit differently. And maybe look at things a little bit more in a progressive way. I'm not by any means saying that a special school setup is, is not progressive, but she wanted to kind of maybe do something about the adults that came here, right? Um, so I mean, most of the adults came here because there was no other place to go and they didn't find any other vocation or any purpose in life, you know. Um, so just like their siblings would kind of finish school and move on to university or do a job, they just ended up, you know, coming to school because that's what was expected of them. So we started doing things a little bit differently. But before we moved on to the actual kind of supported employment and the workshop stuff that we do now, um, we started kind of focusing more on life skills, on developing meaningful tasks for people to follow their interests, to actually ask these people, what did they want to do? So what were their goals? What were their interests? Um, so, you know, were they creative, or did they have more manual skills, or were they able to construct something, or could they just do packing? You know, so, so the whole process went through this. And also, I think COVID taught us, uh, a lesson in the sense. We started working with these individuals while they were at home. So we were working remotely. That also gave us a huge insight as to what their life was like at home. So a lot of these individuals probably had everything done for them. So they didn't have, like, basic skills. Even though they were able to maybe cook or clean or do other things, it was very much like treating, you know, they were treated like, yeah, because a lot of parents also don't have the necessary understanding or the support to guide them, to tell them, no, your child can do certain things. And so they, they think the child is completely helpless, right? Capable, or maybe out of, I mean, out of, you know, trying to support them, they were actually disabling them. So we, that was one of the things that was a really kind of eye-opener for me as well. Because often we'd see these students in a in a school setup or, you know, maybe in a clinic, but we don't really know what's going on at home. So, so through that process of working, you know, remotely and through a camera, we kind of got into their lives and we started kind of focusing on things like cooking and, you know, maybe household tasks, developing some sort of, you know, focused skills. So, you know, helping them through the tasks and things like that.

So, okay, for me also, the other aspect of this is because I was hanging around my mother all through her work, uh, a lot of the people who are, you know, are workshop users, some of them are my friends. Like I've known them since I was five or six. And for me, how SJDSF changed its focus is more to do with what are best practices outside the country? What are the potentials of people with Down syndrome, autism, any other kind of learning disability? Because where I lived before I, you know, moved back here, there are, you know, employers like, you know, the cashiers or the checkout line assistants, they may have Down syndrome. There's a cafe in Princeton called the Blue Bears that's actually, uh, staffed entirely by people with Down syndrome. Just the finance manager and the head chef is a neurotypical person. So, um, so I, I sort of saw what's possible. Yeah. Um, it was very difficult to translate that to. So that was going to be my question because you have this exposure to what is, what is the social attitude or, or even the, an employer's attitude towards learning disabilities versus how it is in Sri Lanka. When I returned, you know, some of my, you know, friends, they like, we want a job. Like, we are 30 now, right? That was one of the things that made me think, like, you know, I've left you guys, I've had a life, I've studied, you know, got married, all of those things. Like, which of those experiences can you all actually have? And let's see, you know, how, how much forward you can take that. So they said they wanted jobs. And I was like, actually, why not? Right. I've seen, seen that is possible.

Um, can you tell me a little bit about, uh, when you talk about they have interests and they have skills, and what have you seen now, in, in the short time that you have been working here, what kind of growth have you seen? So I think a lot of the time when we measure a student's success, it's very much focused on, I don't know, their literacy skills or how they perform in an exam. Or we kind of, we always kind of compartmentalize them to be in a certain profession. Are they good at, you know, certain hurdles that we set up? So the kind of assessments that we do, or the way that we see somebody's progress, is is in a very different way. So we want to see how the person is able to adapt to an environment. Are they successful at communicating their needs? Are they able to, uh, give feedback on what's going on? Are they able to pick up on something by watching how someone else works? So for our assessment process, it's a little bit different. So when we measure somebody's progress, it's in in that way. Um, so when I, the the difference that I've seen in in the way that we've started working is that we do what we call an individual personal plan, which we do together with the student. And rather than asking questions, it's kind of based on scenarios. We use a lot of visual supports and maybe talking them through stories to help them understand what it's like to set goals, what it's like to identify their interests, what it's like to have a focus on something. So, so through that, then we're able to guide them to, you know, to engage in something that they are actually good at and things that they like. Because sometimes what they are good at may not be something that they like. So it's about finding that balance and helping them through that process. So it's a long process. And just like everybody else, interests change. Um, you know, people can become bored doing something, or they might still want to focus on something that they may not be able to, you know, to do. So it's a process and it's a, you know, it's about balancing. It's a balancing act. It's about getting them through that process.

What is it, do you think, that prevents donors from, I mean, I know how much you struggle to kind of advocate for fundraising and for donors and sponsorships and stuff. And there is this whole thing about, you know, what is a responsible corporate citizen, right? Or people love to do charity. Sri Lanka is one of the most generous countries in the world, but somehow charities are cherry-picked. Yes. So I mean, I have some stories to tell there. Um, one thing is that, you know, our building is not crumbling, people are not starving in in this organization. Right. And and that is, you know, like a double-edged sword. It's well-run. It has a, you know, for what it's worth, uh, a foreign-educated team running it. And people think we don't have bills to pay, right? So they don't understand that. Um, and obviously, when you're competing, you know, it's, some people really do want to focus on the, the charitable aspect of, like, there's a school with a roof that's collapsing. Let's help that. One time done. Same with a starving population. It's a little bit of a sort of a different way of thinking that when you help someone help themselves, then, you know, at some point, maybe you will be done with the helping, right? Maybe they will stand on their own two feet, or maybe that family will stand on their own two feet. And that is more, more our goal. I, I think, um, Sri Lankans are very charitable. Yeah. And there is also a certain idea here, the sort of the mentality. Right. But they want to work, they want to have a sense of community. And why can't they? That's my, my thing is, they are capable. They are able. They are able. They are capable. We get joy from working, right? You get joy from, from, you know, helping people understand social issues. I get joy from helping another mother with a child who is difficult or, you know, needs help. Right. But, you know, somehow there is this idea that, you know, if someone is disabled, we should take care of them by almost infantilizing them. Right? That's more of a disservice to that person. Absolutely. So that's what I said when I had, like, left Sri Lanka for like two decades or more and I came back and my friends were in grade 10 and they were in grade 10 for like 10 years. And I'm like, what happened? Right? Like, what happened to, like, the next stage of their lives? And sometimes it's very hard to, like, um, get out of the "good enough." Right? There are so many problems in Sri Lanka. You know, they're safe and they're happy and they're coloring books in a corner all day long and they're 43. What's your problem? They're safe, right? Sometimes it's hard to get families out of that mindset. It's hard to get employers out of that mindset. Because one of the things that we currently struggle with with our supported employment program is, you know, we are actually very selective nowadays because we've had some experiences. Some that have gone fantastically well, and some that have been like difficult. And and the difference there, there is some people actually get, get it right. Like that, you know, we are trying to bring someone who can contribute to your workplace. We don't want charity. Because especially in a tough situation like Sri Lanka is in right now, charity is not fully sustainable. Right? We want something that's sustainable. You know, can someone contribute to your workplace if you make a few adaptations that you can make, can afford to make, to support their entry into your workplace, or or the continuous support of them? But we, we don't want someone to feel sorry and say, oh, you want someone with disability in our office? Okay, we can, like, you know, um, give them a seat and they can just stay, stay there, color books, or whatever. And because that's just a real disservice, right? Because if that person is, you know, bored, then they might disrupt other people. Uh, somebody else might have to take time out of, you know, doing the job that they are expected to do. They probably have targets. And then, you know, keep this person entertained. That's really not what we are looking for. We know that they can contribute and we want them to. We want them to get the right sort of opportunity so that they can add value to wherever they are. Uh, there's obviously also the whole, you know, what you gain from having diverse people. I think it's just good for morale. You know, you get a diversity of ideas. And I have to genuinely say that I have been given ideas about how I should change how I do things, products I should make. I have been told this by some of our, uh, team here. You know, and the person has Down syndrome. But, but I learned something from them.

A little bit about what you do here. Uh, I do wrapping paper. Mhm. And I, uh, make Christmas trees. Yeah. And when I came, I think the last time I came, you were doing tie-dye. I went, tie, um, I dismiss. And they told me that you're like a machine when it comes to the tie-dye. You can do a lot of them. At least, right? Um, can you tell me, uh, what is it like to work and to make your own money? How does it feel? I guess, um, and I go, I go shopping. What kind of things do you shop for? Uh, I, uh, candy. And I brought all the things I want in school. Um, I, I did a tie-dye. Mhm. And, uh, and here, um, I did this on shopping papers. This, uh, this all paper I did is cool. And you sell them at the shop? Yeah, at the sale. At the sale. And what's that like? Like, what do you do at the sale? How do you sell? Um, I said a lot of things on the, I, I did. Yeah. And the bracelet. I did the bracelet. Yeah. The nice. What are they made out of? The, the beads. Beads. I did. Yeah. Those are kind of cool. Yeah. We don't think about the people who are actually doing the work, right? What are your needs? What, what do you wish Sri Lanka knew about this job that you do, for instance? Or what do you wish parents of the trainees do? Yeah. Or what would you like people to understand about what perhaps your experiences are? Yeah. I think, I think that answer probably is going to be at different levels. So if I may, kind of speak on behalf of the parents, I think having a child with an intellectual disability is very challenging in a culture like ours where people often, I mean, it's, it's so competitive. A child's performance is like so, uh, you know, that's what you aspire to, like they have their grades in school or, you know, what they achieve. So people don't really celebrate people's diverse abilities and and their presentation. So it's especially hard for a parent, you know, with with a child with an intellectual disability. I mean, parents tell me, um, you know, often the, the stories they, they share are, we, we often have this thing about, you know, it's, it's something that is a result of something you've done in a past life, or maybe it's something that you, I mean, there's a lot of ignorance. That's a lot. There's a lot of ignorance surrounding it. So I mean, we want to show ourselves as a very supportive, caring society, but actually people have a lot of preconceived notions and they bring that into conversation. Intellectual disability is often seen, especially in the early stages, it's something that needs to be fixed. But often these conditions are lifelong, and people's level of ability, yes, you, you can change, but it's not about, you know, making them typical. Or there's no normalization of of that difficulty. It is a disability, and people have to live with it, but it's about trying to maximize their potential. And that's what, you know, therapy or support or education should target. But the challenge in working within that setup is that it's very much, you know, it has to be fixable. And people probably don't think of alternatives. So, so it's that that I find very challenging.

Then tell me about your experiences here, about their experiences. Um, can you, can you tell me what is it that people really don't know about what their capabilities are? Or, um, or essentially the fact that we, we sometimes, along with infantilizing, we also sometimes dehumanize, right? We, we sometimes feel like just because somebody maybe perceives the world differently, or behaves or expresses differently, that they also feel differently, or that they, um, they, they breathe differently for some reason. We, we can't seem to relate unless we actually have a family member. Absolutely. Right. And, you know, when we go out, what we find is quite often there is a family member. So we lecture to, like, uh, workplaces, and there'll be 20, 30 people in the room, sometimes. And when you ask the question, have you ever, you know, come across a person with Down syndrome or autism or any other, you know, developmental delay? No one will raise their hand. But quite often, when we are walking away, someone will come and say, you know, my cousin has it, or, um, or someone I worked with before. Or it's usually a family member. And they, it, it really speaks, resonates with them. What we are trying to do. And that's to do with the stigma, right? They don't want to, in in a public space, the fact that they have someone with a, um, one of these disabilities. Um, how are, what are they like? I mean, I think they are just like us. You know, because neurodiversity is actually a spectrum, right? Where does one thing start and another thing end? Yes, Down syndrome is genetic, that we know. But, you know, we all have quirks. Um, I think they, so a lot of people here are extremely social. And they struggle, just like the rest of us who are sort of on the more social end of the spectrum, if you cut off their social outlets, right? Like, I see whenever we are closed for holidays, whenever something has happened, or they've fallen ill and they can't come to work, I, I see, you know, my phone starts to ring at like odd hours in the night, and people sound very distressed because, you know, they don't have other outlets. Their whole world is here. Because, because in Sri Lanka, you know, there is a lot of judgment. When you, when you go out in the world. Stunningly enough, people come to this organization to try and help us. And they sometimes make extremely sort of stigmatizing statements. Okay. Like, what can you tell me? Because for me also, it's a learning, yes, right? As well as I think for those of, uh, audiences who are watching, it's definitely a learning. Because a lot of us don't know what it is that we're saying that's wrong, because our behavior has been normalized by society. Yes. Okay, fair enough. So I'll, I'll give you specific examples. We had a, a young lady with a rare genetic condition. She unfortunately passed away, um, uh, last December. That was how our New Year started, 31st. She was in a wheelchair. Sometimes her mother, she was very small in stature, so sometimes her mother would carry her, sometimes push the wheelchair. And her mother once, you know, told us, she was just walking in, like, a Kandy, uh, going shopping, and she said, a woman passed her by, walked 30 paces in front, turned around and came back and said, "This must be your karma." And she looked at us and said, you know, why did she have to do that? You know, she could have just walked on. Why did she have to like, come back and say this and hurt me? Right? So I think people sometimes talk without thinking at all. And I think that's something we would definitely like to change. You know, think a little bit about, you know, what the other person is going through with before talking. Um, the other part that I don't really understand is, along with the stigma, in this very charitable society, sort of assistance for for the families from their communities sometimes seems to just fall away. So, um, periodically, we meet with the caregivers to find out what's going on in their lives. You know, what is their support network? Because we also try to support the families because they are under extreme stress. Um, so there's your one young woman who, uh, basically needs a lot of help with her self-care. And she's, uh, 18 plus, fully grown, strong. Um, and the caregiver is the grandmother, right? And we are, you know, talking amongst ourselves and we like, we would like to know what her support network is because she's getting on in years, right? And so we met with her and we asked, like, what is your support network? And she was like, um, you know, we had a big family, we had a lot of friends. But, you know, in Sri Lanka, these are her words, when a child like this is born, that that all slowly falls away. And I don't know why it falls away. She's like, now it is just me. And, you know, sometimes the lady next door will help me. But that's it. So I, I don't have an explanation for that. Because, you know, we take a lot of pride in being a Buddhist nation. You know, we are very spiritual as a majority. Talk about charity a lot. But what actually happens in this translation of seeing somebody else's struggle and not wanting to help? I really don't have an explanation for that. I've also seen, and I would say that I used to be, uh, guilty of this as well, okay, uh, before I understood what differently-abled or disabled or intellectually disabled, uh, meant. Um, there was this thing of, and I've seen this a lot in society as well, but there's a sort of a fear of engaging with people who have, uh, intellectual disabilities. Like if you, if you meet someone with Down syndrome, or if you meet someone who has, sort of, is obviously autistic, that it's visually, uh, present, uh, that sometimes you kind of don't want to engage. You move away. Or to do with, like, misunderstandings. And, like, an, not all, just like all humans, not every person with a developmental disability or Down syndrome or autism is the same. It is a spectrum. Sometimes they worry that they're violent. Are they violent? I mean, obviously, if you've, you know, kept a child chained to a bed who has a behavioral condition, rather than getting them the help they need, yes, that person may be violent. But I, like, you know, one of my friends here, she has babysat my three-year-old, right? I had something going on, my kids didn't have a car that day, and I brought them here, and I put them in the sensory room, and the auntie sat with them, right? So, you know, not, there's nothing to be scared of. They're just like the rest of us. Another misconception is that it's contagious. Ah, that it's contagious. So, you know, we will have trained young people, then it'll be time for them to get married. Then the in-laws will say, you know, maybe don't be around this sort of place or this sort of children, because, uh, especially if they are hoping to get pregnant, or if they are pregnant, if you see a person like this every morning, your child will also become like this. And this, we have heard from schools, not in Colombo, but that, uh, in some schools that have special needs units, they are trying to be inclusive. They want to have people, the, like the government has said, take people with disabilities in. But, uh, in that community, the parents don't want their children, or don't want to see, like, I don't know, the shadow of such a person cross their path or something like that. And we have been told that, you know, special needs kids are put behind a curtain so that, you know, you don't see them first thing in the morning. Wow.

Does it feel like one step forward, three steps back when you work, or do you see things that really make you feel good about the progress that's made? Oh, I think we've come a long way from where we were. But I mean, if I just kind of, uh, look at even things like supported employment. I mean, supported employment is very new in Sri Lanka, especially when you talk about supported employment for people with intellectual disabilities. I mean, it may have been there for for people with physical disability, or with deafness, or, you know, the likes of visually impaired, who don't really have a significant, you know, the cognitive aspect is not impacted. So there's probably changes that the workplace needs to do for these people, but it's probably not as much, you know, the adaptations are not as much as it would be for somebody with an intellectual disability. So I, I often find, just to give you an example, I've, you know, been to institutions and, you know, employers talking about intellectual disability, and I've been asked, you know, somebody would say, oh, can you tell me that in five minutes? Can you give me that spiel in five minutes? So I, I, you know, then kind of come back away from that thinking, if somebody is not going to give me 45 minutes to explain to them about something that they don't know about, they're probably not going to give the time and the support to someone with an intellectual disability who needs extra time, who needs more understanding, who needs more support. So, so this kind of, you know, this, I find a, a huge challenge. Um, I mean, I think Sri Lanka is a society where when you're driving along and you stop at a, you know, zebra crossing to allow somebody else to cross the road, somebody's beeping at the back, right? So they want you there. They're so efficient in life that they want to save that 10 seconds to get somewhere. So waiting is not a skill that we Sri Lankans have. So then when you're working or supporting somebody with an intellectual disability, it requires you to wait. It requires you to give time. It requires you to understand, pause. So, you know, where are we in this? We just want, you know, things done quickly. It's not that we are any more efficient than any other, you know, uh, society, but we just want to show that we need things done quickly. And so that's a huge challenge when you're trying to convince an employer to employ someone with an intellectual disability.

So what do parents or or families of persons living with intellectual disabilities, what do they need to know? Not the families who have the privilege of knowing that you exist and who have brought them here and who have engaged with you and learned more about their ability, but there are so many families out there who don't even know this kind of service exists, right? So, um, um, one of the other reasons that we switched into the vocational training and the sort of the economic empowerment part was because it's hard to convince people to make an investment in education or upskilling unless there is some payoff, right? Because our system is such that you want to see the potential, you have to see the potential. Yes, that, that also. But our system is not geared towards making life easy, particularly for women, right? Our schools are only open till 12:00. Drop-off is at 7:30. If you have two kids, your drop-off might be 7:30 and 8:00. 11:30 and 12:30 pickups. And like, so basically, like a woman can't work, or like the father who's caring for a child can't work in the morning. So they are taking some of their own resources and earning capacity to put into taking a child or young adult somewhere to help them get to another place. If the idea is that they will never go anywhere else, they will always be dependent, why would you do that? Maybe it's better to like save that money for, uh, you know, when you pass away, so that you can pay for the care home that will take care of a person, right? So what we wanted to do was actually show that, hey, these are people who can contribute, who can look after themselves. We do a lot of life skills training here, so that they are not, you know, dependents. They go home, they can make their own snack, they can make their own tea, they can go to the grocery store, help Mom, right? Um, and through the bringing in a salary thing, you show that, you know, they can actually contribute to the family in that way as well. So what we want people who don't know about this place to know is that when you are told your child has a special needs, you know, it's not a lifetime, doesn't need to be a lifetime of that person being dependent. If you, you know, get the right remediation, the right sort of training at the right time, the critical window, they can get quite fine. How independent they are, I mean, even in our workshop, you will see different levels of abilities. And quite often, it's to do with how much the parents invested in in in the person, in including them in everything they do, taking them out, helping them meet other people, sending them to school, you know, there are some parents who have taken the child out of Sri Lanka for a while, for at least the younger years, and, you know, we are the beneficiaries of that because they've come to us not needing, you know, so much help. Because what, what happens here quite often is our system, we, we try to be, I think there are some, uh, um, directives from the Education Ministry, for example, that say that you should take all, it's actually misunderstood. The directive itself is not, not a problem, but some schools have misunderstood it and they think all kids are required to be in a mainstream school. But then they don't have the educators, the training, the facilities to accommodate them. So Nali has had parents come to her and said, may I went to a school for 13 years? They make the mother come and sit with the child also. Also, both these people have been sitting in a school and they come out with like no, no skills. They can't feed themselves. No one has encouraged independence. But our, what we want people to know is, you know, as you get closer to like 12 or 14, talk to people who are, you know, have this, who are fostering independence, so that you can maybe take your child to the to the next opportunity. Because we want to work with young people and help them get the skills so that, you know, when they're 18, 21, they can actually, uh, take a role in another organization and earn a salary. And, you know, I want to pick on something that you said a little while ago about the way Sri Lanka treats women differently or employs women differently. When it comes to people living with these disabilities, do you find that there is a difference in the way the girls are treated versus the boys are treated by society, by, uh, employers that you might approach? No, because I think you were talking a little bit about, uh, the othering, right? So you're a woman, I'm a woman, they are them. Sometimes they are called an it, very rarely, thankfully, but they are sort of desexualized, which is a problem in itself. Because as I said, everyone's on a spectrum, right? So they do have desires, they want to have relationships, they see their sisters and brothers take advantage of. I have, um, yes, I mean, obviously in Sri Lanka, there is a whole, uh, very much talked about green cabin incident. He was one of my mother's, uh, patient. Yes. But anybody who with diminished capacity in Sri Lanka may be taken advantage. So we did a, we did an episode, uh, sort of a couple of episodes ago, we talked about people living with disability, which was physical impairments, yes. And we actually discussed how girls, especially with certain physical impairments and disabilities, have been sort of over-sexualized, made use of. Take, but I, I know that people, for instance, somebody who presents as Down syndrome and autism can be misused or abused. They can be groomed more easily, perhaps. I mean, I work in in Colombo, and I haven't heard that directly affect, um, the young men. Yes. Um, so we've had some young men come from having tried working elsewhere, and quite often they have been ill-treated or misused. Happened in a hospital. He's quite a capable young man. We, uh, you know, help him with his mental health and other health needs. We advise him on, you know, where to go. Um, I think an orderly, you know, tried to pull him into a, a room, and he's capable of taking care of himself, so he had shouted and said, "I don't want this." And another patient had come to his aid. Um, similarly, when they work, sometimes people know that they are, you know, trusting, and they'll use them to go buy drugs or something like that. So that sort of misuse, yes. Um, you know, I, I haven't recently heard a, you know, horrible sexual harassment story, but, uh, people also don't talk about them here, right? So there are sometimes where we've seen like behavior changes, and we've tried to follow up with the parents, like, what's happened? What's happened? What's happened? They might just say, after an incident, and we don't know what sort of incident. So the trainee wouldn't tell you about that incident. So sometimes they are not verbal, right? So they are not verbal. Our cohort is now different compared to, you know, the people that we had, in some cases, five years ago. So, so I mean, we've had situations where, you know, we feel that maybe something happened somewhere, like at home or whatever, but we don't know what caused this change. If, you know, parents won't come and, you know, tell us. And we all know, right? Like, the statistics for sexual harassment and things like that, it's apparently like one in three women, and it's usually by someone they know. So then, people don't want to talk about someone they know.

What do you think it will take for Sri Lanka to stop sort of stigmatizing intellectual disabilities this way and to be sort of to talk about it without, especially for families to not feel like they have to hide these children away? I mean, I, I feel like, you know, it takes much more of the work that we do, right? Where, where the person with intellectual disability is actually accepted as a member of society who deserves to be there. It's not because of their parents' karma, they are contributing, and then they are valued, right? You need that to happen before people feel bad for having had that child or being made, made to feel bad for having had that child, right?

I'd like to know, like, in terms of, what are some of the good moments that people don't expect? From, you know, they don't expect personality, they don't expect likes, dislikes, they don't expect a voice, a choice. What, what can you say about that? I mean, I think it, it always amazes me when people come and see our students actually manufacturing something, you know, when they're going through that process, and people are like, oh, wow, they can actually do all the steps of this, this exercise, you know, they're actually producing something that is meaningful, that can be sold, that somebody would be happy to pay, you know, to buy. It's not kind of the mentality that, you know, somebody's holding your hand while you're manufacturing this. Because sometimes when they meet somebody for the first time, okay, maybe that person cannot speak. So when they don't speak and interact with you in the same way, you don't expect them to have enough manual dexterity or be able to follow certain instructions or, you know, actually engage in something meaningful. So sometimes, you know, when we've gone on kind of, uh, employment visits where we try to train people out into supported employment, people would say, oh, I don't know how to talk to this person because, you know, he's not, he can't talk back. And we're like, you know, he can follow instructions, or he'll watch what you do and he will learn. So, you know, just because somebody has an intellectual disability doesn't mean that they have, yes, they might have learning needs, but it's not that they're incapable of learning. There's some level of learning that they can actually do. And it's about adapting the task, and it's about adapting your instructions. Um, and that often people find it very difficult to understand. Because I saw V working on the tie-dye, and she was like a machine. Absolutely. And I think she was putting out like, said about 20 to 25 t-shirts a day. And I like, whoa. And she enjoys what she does. And that's the, you know, that's also an important factor. Yeah.

[Music] Hashan. Okay. Foreign speech. Okay. And okay. Okay. Tell me about the work that they do currently from the, uh, from the foundation. Um, I know that some are employed as well, right? Yes. So some of them are, um, so most of our students work in the workshop, and they manufacture some of the products that Hashan was talking about, and that's what we sell in our shop and in the sales. But we also have a stream of supported employment where our students go out into the community and work in mainstream setups, right? Um, so they may work in a cafe, or, you know, in a shop, or engaged in, you know, some sort of formal, in a formal work setup. Um, so I must say that the workshop setup is quite familiar to people, right? Supported employment is definitely a new concept for Sri Lanka. So wherever it's done, it's done at a very minor scale because we're a long way away from sensitizing other employees to have a colleague with an intellectual disability, and the support and the time that it takes.

Um, a lot of employers find it challenging. Um, but I don't think looking at the future that supported employment is going to be an option. It's going to be a necessity because we can't call ourselves a society that's inclusive and progressive if we're going to, you know, move ahead with leaving more, you know, a certain.

But there are best-case scenarios outside of Sri Lanka, right? There are best practices outside where this has been done quite successfully without it coming at a major cost to the employer at all. Absolutely. Okay. But that actually has, that process has taken time. So people's understanding has grown and you do have certain societies that are more inclusive and progressive in their thinking. So I mean, you know, so we need to kind of step away from that charity-led, care-led kind of uh setup and move on to a position where we think, okay, what are this person's skills and is, is this person actually able to make a meaningful contribution into my workplace? Uh, because it's not about giving them money for charity, it's about giving them value and paying them for the work they [Applause] do.

Okay. I, ah, okay. Nice. So tell me some of the good stories here, some of the success stories, maybe some of the experiences that sort of you had with your friends and with your team here that people might be like, oh, I didn't know that was possible. So I mean, one of the things that people are surprised by is that we, uh, pay them a stipend for, for their contribution. And, you know, it's variable depending on how independent they are, how much they need the help of one of our teachers. Um, but the first time they got their stipend, just the joy was palpable. Everyone was talking about, you know, I took my mom for a coffee. Or first salary, right? For. And that's the thing, right? They're just like us, you know, first salary, we, we remember what we did. And, um, I bought a handbag. They'll come and like, they'll be like, oh, look, I, I bought this purse. And it's just like, so much joy. And generally, what I love about places is that there is a lot of joy on this workshop floor. When I walk in, it's all smiles, it's all highs. Nobody's just completely like stuck in their laptop refusing to even look up at you. They bring a lot of joy to our lives, actually, because, you know, sometimes it's good to have a simpler outlook on life, right? And that's, that's what we, I mean, we, we love.

And you have a lot of stars here, you have quite a few stars, right? You were talking about and dancers. We have three aspiring models. Uh, Chinda here is a singer. Uh, he serenades us from time to time. Hashan also sings. Hashan sings. He's not here at the moment, he's traveling in Australia. Um, but, uh, there are dancers. Um, so there are artists. Like pretty much all of them have, uh, skill in art. Janaki Perera, the artist, she comes and does art therapy. But we also like use the, the things that they paint in, in our product line to decorate bags and things like that.

And how about your staff? I mean, you do have, I would imagine that it's difficult to find people with the right passion and the right competencies, yes, to sustainably keep running this place, right? Without it being a burden on those who are already here? Yes. I mean, I think, um, that's always been very hard. Um, a lot of the people that we end up retaining, there is some story, whether they've told us or they've been too ashamed to tell us, then it later comes out. There is some connection to special needs. Uh, one of our teachers, her, uh, sister has been in our workshop for years. Um, the other is just, you know, they, they have something in them that they get it. They have the compassion, the patience, you need a certain amount of patience to do the, the work that they do. But now I feel like it is also less demotivating, right? Because people don't stay here, as I said, in like year 10 for years. They, they progress, they make something, there's something changing. Maybe they are always going to be in our workshop, but the products we make may change.

So, is it easier to find staff now? I mean, it's never easy because I think, you know, fundraising is hard. Our salaries could possibly be more. Um, but, you know, we are happy with the team that we have. Um, it would be easier if we had people who are sort of like, you know, plug and play almost. They, they come trained with the, with the right sort of, um, ideas. But I feel like the more progressive of the places in Sri Lanka, even like preschools, the teachers are very young. And I feel like it's to do with someone having a bit of an outside-the-box for this country way of thinking. And they find it hard to get trained people because then they have to undo all the, the stigma, the, you know, like, for example, you know, in, in Sri Lankan schools, the teacher is like a god, right? And yes, people who teach us deserve a lot of respect, but you have to think a little bit about what makes and what doesn't make sense, right? You can't have like a, a 20-year-old teacher being revered by a 40-year-old workshop participant. It's, you know, yeah, it's, it's not good. And if you force them to do that, that's also a different, you know, whole different thing. And, you know, sometimes when someone comes to us with an attitude like that, we just like find that somewhere along the line, it, it breaks down because then they won't get the next part about, you know, we are trying to foster independence. This is not a charity case. This is a person good about contributing. Exactly. And, you know, it's good to do charity, but, you know, we are doing something different. [Music]

Okay. T-shirt. Uh, okay. In terms of our goals for, like, the country and our community, the special needs community, we would like there to exist more places like that, like us. And for it not to be concentrated just in Colombo, right? Uh, we would like.

So, is there an expansion plan? A dream? I mean, that is the dream, right? That I mean, we do do a little bit of services to people who are near enough to travel to us at least once in a while. We try to train them to do, uh, work from their homes, like learn some sort of craft. We'll maybe purchase it back from them. We'll help them with the raw materials and, um, maybe they can earn something that way. But ideally, we would love to train, uh, sort of job coaches all over the country. Uh, we would like everyone who, you know, has a child with a special need to know that these avenues are open if they, you know, get the right education, know the whole process, right? I, I think in, in other countries, you get much more visibility into, okay, a child with Downs was born. Now I see a child with, a young person with Downs working in my supermarket. So, you know, it's possible. You think more about, you know, okay, what are the next steps, right? Um, yes, I think the, the goal with, uh, SDSF. The other thing that we have, like, why do we have such difficulties with funding? Organizations such as us in the, in other countries, for example, would probably there would be five agencies doing all that we do. And, um, there is, uh, not a tokenistic, but there are like real targets for inclusion, right? And, um, you know, you hire maybe consultants to help you get there. So in another country, instead of us, like, I mean, this is very early days for Sri Lanka, right? Like, I always laugh to my friends saying, what do I do? I'm a professional beggar. So, so you either beg for money or you beg for opportunity, right? So you can't like, you know, go and say, here, this is this new thing that you have never done. Please let me prove to you that this will add value to your workplace. And hey, pay me for it also, while while we are at it, like that just doesn't work. So you, you know, try to get in with people who at least like understand what you're trying to do, are open to being truly inclusive, uh, adapting the workplace, supporting, uh, people be employed, and then, uh, following the best practices. The dream would be that one day, you know, people would pay you for, for that service because it is a service. Capacity building in an organization, right? Um, so that's maybe like the, the 30-year goal or something like, fingers crossed, it'll happen way before 30 years. We will see.

Talk about it. What are the many ways in which people can be a part of the work that you do? So we have many avenues, actually. Um, obviously, the biggest thing would be to support us if you have the means with the funds because that's what, instead of in growing our programs or supporting more people outside of Colombo or something, most of our time goes into like, oh my God, oh my God, how do we pay the bills at the end of the day? So obviously, if you have the funds, donating to us. Um, obviously, if you're an employer, having a conversation about what it would take to employ someone who is differently abled. If you are, you know, out and about, uh, make people feel welcome. If you are in a church or any place that has like, you know, sales opportunities for the products that we make here, hosting a sale. Are Ena and for now, the products are available where? So they're available through our shop at Good Market every Saturday. We have a stall, uh, sponsored by one of our donors. Um, we do various pop-ups at corporate, um, campuses, corporate headquarters. So if you have a, um, work in a, you know, a large building with a, with a sizable population of people working there, you know, organize, help us organize a stall there. We, we do everything. We just need like someone to give us two tables and four chairs. We'll do everything else. Have, uh, a lot of sort of capital improvements. Uh, the build, like the roof is leaking. Um, we don't have enough lights because this building came up, uh, behind us and now it's much less bright than it used to be. So simple things like, you know, do we have needs that someone can fund? Absolutely. We could do with like, you know, paint, uh, fixtures. They're starting a new dog biscuits business and they're cooking the biscuits in like small batches. Obviously, that affects like profitability. If somebody could donate like an oven, that will make it like so much easier. Tons of things like that. Okay. Mhm. Thanks so much. And I do want to go around and maybe absolutely sure Christmas. Make, oh, Christmas for. [Music]

Shalinda is, uh, part of our supported employment program. We start them off in our workshop, um, and give them the experience of being in a, in a workplace. And we also observe them to see what their skills are, whether they need some additional help. And then we take them for the work options to see how they work in a, in a new setting with people they haven't met before. And then the broad, the bigger goal is should they have the independence to place them elsewhere. Like, for example, our pilot was done with, um, Barista. So we have a young man working there. It's more than a year now that he's been there. Everybody's like super happy. So, so that's sort of that's our process. [Music] [Music] [Music] Oh, [Music]