Transcript:

00:00 Hello, this is Melissa Hale-Spencer, the editor at the Altamont Enterprise here today with a beautiful young woman named Sonal Swain. And I heard about [inaudible] from the librarian at Guilderland Highschool, Bernard Bot. And what he told me about her project is fascinating. So welcome Sonal. It's really nice to be here. Could you just tell us a little bit first about e equals Mc squared because that's the program that you're working on. This project with Mr Bot. So equals MC squared is an independent research class at Gill and high school and it's basically, it's a very non traditional class where you know there's 10 of us from all different grade levels and basically at the for at the beginning of the year we're all posed a question or a, we're all um, kind of encouraged to ask question that we dig deeper into over the course of the entire year. So we have independent projects, we, all of our assignments are independent and we go back to our advisors but it's very self directed class and everyone knows equals MC squared.

01:09 The Einstein formula is energy turns the mass and speed of light squared. But what does it stand for in this case? Does it have a translation? Um, I'm not sure to completely, but equals MC squared. The class itself kind of stands for, um, a hold different things. There's the five cs, creativity, curiosity, collaboration, um, you know, all of those, they all kind of not symbolize scientifically, but kind of the general, um, or a of collaborations, curiosity, you know, going out and seeking answers to our own questions. Great. Well, I read a little bit on your website and it, you wrote about yourself that you had always thought you wanted to be a doctor. Yeah. So, um, I think ever since I was little, um, I grew up in eastern India, so, um, you know, I saw a lot of poverty, a lot of hunger, and so naturally from really young age, I thought healthcare was kind of the way that I could give back.

02:08 And when I came to the u s you know, I, I clung to that dream of mine and all the way until last year and to this, even to today, um, you know, medicine, something that's very, very important to me because I saw the impact that I could have had when I was back home. Well, tell us a little about your home, about where you're from. Okay. So I'm from a small town called burn four, which is on the coast of India, on the east coast. Um, I was there until I was eight years old and I lived in different places, but that was, I, I spent like a few years there. Basically it's, it's a small town, I guess it's, it's large in population compared to the u s but I lived there with my grandparents and um, I was born there too. So it's definitely a fundamental, um, kind of aspect of who I am as a person, my dreams, and as well as a project that had been working on.

03:01 Of course, we'll, so what was the transition like at age eight when you came? Did you come first to Guilderland or somewhere else? No. So in between, I lived in Australia for two years and then I had come here before, but like I had never moved here. So when I was eight years old I was definitely very, very excited to be here. I'm as excited to be new, like different people from all over the world as cause I had to to start something new to be in a new country. Um, my parents had lived here and my brother was born here too, so it was definitely like coming back to family. It was really, really exciting for me and it was just like something completely beyond what I had known is on the other side of the world. So, you know, it's very exciting. Well, so when you started with this project idea, reading your website, and I love the way you're very personal.

03:50 When you're right, you had a very broad idea for your project. It had to do with medicine and education and the third world, but then really it sounds like you fell in love with this little girl, Sabrina. So tell us, tell us about that. Who is Sabrina? And so, yeah, so kind of going back to the whole doctor thing that was, you know, medicine was definitely what I was really, really passionate about for almost 16 years of my life. And last year I got the opportunity to work at a summer camp slash school at Camp Colony, which is the Mohawk River, um, kind of valley. And basically it was six weeks where there were kids all around the Capitol district, Albany, Rotterdam, you know, and they were from ages five to 21. And basically there were counselors and we either worked one on one or we worked in groups. Um, so I had one one on one, which was Sabrina. She was six year old, so old, and she had Smith Magenis disorder.

04:46 And I was not familiar with that until I read it in your online account. Can you just kind of give us an a nutshell with that? Yes, yes.

04:55 Severe Disorders. It's a behavioral disorder, which kind of, um, it's behavioral. Intellectual is kind of all those things. So she has, um, difficult, these behavior. Of course she can't sleep through the night. So she's usually really tired in the morning. Um, there was a few intellectual things like she has a hard time doing like analytical things like math, but she was amazing reader so it was kind of um, an overarching disorder that kind of took into extent a lot of different things. It wasn't just behavioral, it wasn't just genetics. It was a lot of different things.

05:25 Well, I'm just going to read for our listeners this one passage you wrote about her because it was just so moving. It's, you must have written it on her birthday. Yes I did because it says happy birthday princess. I'm trying to get in front of the microphone to read this. Um, I think about you constantly. I miss you so much. You're the lock screen on my phone and I catch myself looking at it whenever I feel stressed and overwhelmed and it never fails to put a smile on my face. I looked through hundreds photos and videos of you tonight and I found myself weeping with joy, sadness, and most of all love. It has been a really rough year. And not a day goes by that I don't wish I was back at camp with you. Chasing butterflies are reading to you in the Hammock as you fall asleep on my chest. This is beautiful. I get goosebumps when I read it. So tell us how you

06:21 I love with this little girl. I think going into camp I had never experienced working with children with disabilities. Of course I have a younger brother. I've always done a lot of things with little kids, but this was just completely beyond my comfort zone. Knows it was a world that I'd never seen before. Um, and Sabrina, I remember when, um, Mitch, the director, he was like, you're going to fall in love with Sabrina. She's exactly like you. So this is Mitch hand. Yes. Yeah, so he's a director of camp, so they pair each of us individually. And I have to say they did a phenomenal job preparing me and Sabrina, but I dunno, I think she symbolized a lot of the, almost freshness that I felt going like experiencing the world of disability was not something experience. And, you know, she always had a smile on her face.

07:08 Um, she, she was just so much fun to be around and it was definitely refreshing cause as much as I fell in love with her, I kind of fell in love with the idea of her, you know, this whole world of disabilities, his whole world of taking care of children are learning with them or um, you know, special education that I'd never seen before. So it was almost a parallel to how I was feeling towards just this new experience. And you know, how attracted I was to this new field. And, you know, she brought me outside my comfort zone quite literally. But I, I don't know, it's like looking back camp definitely change my life. Sabrina most definitely changed my life. Um, anyone that kind of talked to me over the summer, that's all I could talk about. I spent almost seven hours with her every single day for six weeks.

07:56 And you know, when you get to know a child like that intimately, you all, you become their friend, their best friend, their, you know, their caretaker, their teacher. And it was just a very wholesome experience that, um, kind of didn't take me away from the whole health care aspect because I still saw that in camp. But it definitely introduced me to something that quite literally just like it just brought up so many things that I didn't know about myself. And you know, how strongly I felt about her might be because of what she opened up for me and the experiences with her that just kind of, you know, paved my way. But also how I felt about myself, how I felt about kids, just everything in general. So that's a lot of importance that a six year old can have, but she most definitely has because you were open to.

08:47 Exactly. So now tell us how that changed your idea or shaped your idea or narrowed your idea, your project that you're doing so well. After a camp, the week after camp, I actually got the opera. She need to go to India, back to my hometown and work at a nonprofit for children with disabilities. And when my grandfather had kind of brought up this idea a few months ago, a few months before camp, I was hesitant about it because at first, you know, I didn't know how camp was going to be. I, it was an experience. I'd never worked in children and special needs, but, you know, going back to my hometown, being able to do the same thing. Of course I said yes to it, jumped in headfirst. Um, definitely when you go from working at a camp that has so many resources and just so much support in the US to a small, almost rural community and just seeing how drastically different those two almost schools and the experiences and the children were, um, definitely was very humbling, but also just amazing because my experiences with Sabrina had already fueled this passion for special education.

09:55 But when I could go back and have him deeper and more intimate and personal connection to my own home, my own, um, childhood, it definitely just made the entire experience both camp and the school that I worked at, um, even greater than I could have been. So tell us about the school. I looked it up online and it has quite an international reputation does so, um, it's called the [inaudible] institute and it's, it has a students all the way from six years old to around 40. Um, and most of the families that are, that send their students that are low income. And so based on the fact that it's a nonprofit, the school relies upon a lot of the funds that it raises locally to help pay for the children's tuition. But this goal in itself, there, the teachers are all volunteer teachers. None of them are certified and teaching or special education.

10:47 Um, this school doesn't have running water. There's no lights, you know, there's no cooling system. So when you're out in the sun in 90 degree weather, you're just out in the sun in 90 degree weather. There's no sanitary bathrooms, there's no resources for teachers. You know, there's no blackboard's. There's no, um, you know, I iPads like we had here. Um, it was definitely almost the polar opposite of everything that I'd seen here. And just how quickly those, it was almost like the flip of a coin. You know, I saw one side of the world and then I saw at the other side of the world. Um, and just everything about the two experiences were different, but the school, the kind of community in the school, the teachers have done a phenomenal job of just making something incredible out of absolutely nothing. And that's something that has been inspiring to this day. While your pictures capture that, I encourage people to go to your website. You have wonderful pictures. You say in your website, a picture's worth a thousand words. One of my favorite ones is the students are all clustered around a carom board. And is that like a common game? It

11:54 is. It's a very common and they just look engaged and happy and it's just a wonderful kind of portrait that you captured that moment. I did go and look up some kind of startling statistics on special education in India. This is from a United Nations report. It says that 0.51% that's less, you know, around half of 1% of disabled students are in mainstream educational institutions in India. And in fact, it's hard to even know how many there are. Um, and I don't know if you can talk a little about why that might be. This, uh, report alluded to kind of a cultural, um, feeling of people hiding this and also mentioned the caste system and how that played into it. If you could just kind of educate us on that.

12:50 So this is kind of what I'm researching. I'm researching almost a social consideration considerations that go into, you know, making India special education, what it is. So the definitely statistics for if you look up special education in India are very, very startling. But something that I have to say from the beginning is that it is getting better. Um, it's definitely, it's come a long way since that was a few decades ago and without a doubt it needs to be worked on and it's a flawless, a flawed system, but it's not, you know, nothing. There's definitely a foundation where you can see that in our country too. Of course. I mean, in my childhood, the special education students were not part of the main. Exactly. Yeah. So, kind of going back to the statistics. Um, there's definitely a social stigma in India about, around the fact of special education.

13:41 You know, disability is not something that's entirely welcomed and that I believe is just because of the amount of time that it hasn't been out in the open. Um, and as, uh, just a society's very almost closed. We keep first, uh, personal matters to ourselves. Um, things like disability are considered family matters, not public matters and how families decide whether or not they want to educate their children. Special needs comes down to their choice. And it's a, it's not a very public thing, but you also have to look at the difference between urban and rural towns. There's a lot more resources than urban cities and whether or not families choose to, you know, take those opportunities is one thing. But in a lot of rural communities, like the school that I worked at, um, there just aren't resources. There are very, very few schools, so they, there's not even a reach for special education.

14:32 Um, and a lot of students, um, and a lot of teachers just don't encourage to students with disabilities to try to work in a mainstream classroom because the Indians are very, very fast paced society. You know, everyone's just moving at lightening speed and we're all doing something and it's almost regarded as special. Like kids with special needs can't keep up. Um, and I'm not saying that's the right thing, it's just how um, Indian society is and it's tell, tell us a little more about that. Cause I hadn't known that about Indian society. The piece of how people do things is just kind of unpack that a little. So India is definitely known as being one of the biggest cultural hubs, you know, were blooming our economies just completely off the charts. You know, we're growing and thriving. There's a lot of technology, a lot of the stem things just every single day.

15:23 And you know, I don't know. Stem is science, technology, engineering and math. Yes. So you know, there's Indians come almost days are always fast paced. Especially when you look at education. There's always something going on. There's always brand new innovation, stuff like that. So there's, and there's definitely a, Oh, I want to say a stress culture and, um, in this education system, which a lot of children disabilities can't keep up with a mess. There's ad yourself go to school before you were eight there. So what was your schooling like? Um, I don't, honestly, I don't remember a lot of it, but I do remember there were long days. You know, I went to school from nine to five, which is a lot longer, um, school in India, six out of the seven days instead of five out of seven. So we have school on Saturdays too. Um, and I guess that just goes to show like education is very, very valued in India and it's definitely one of the biggest priorities in the entire society and government and everything.

16:22 Um, it, it is a sad fact that a lot of children with disabilities are kind of left out of that system because one, there just aren't enough resources and to, um, it, it really, there's a lot of it that comes down to money. Um, and rural areas in an urban areas, low income families just can't provide for their children to go to school. And especially if you look at a lot of rural areas, families just see more important than taking their children that might have a disability out of school and putting them into the workforce and, you know, helping, um, get, get money for the family rather than spending that money trying to educate them. Um, but there, there is a shift of trying to welcome new students and you know, the Indian government has passed laws over the past few decades to try to incorporate some of the students.

17:09 And I won't lie, it's definitely, it's a slow process, but there are initiatives taking, being taken from every aspect, whether that's curriculum, um, the government society in itself, you know, opening up to this idea and I'm sure it will get there. At one point just, no. So how, even though you narrowed your project to looking at special education in India, it's still a vast topic. What, what part of that is it that you're going to be dealing with or are dealing with? I think I was just fascinated by, you know, a social perception of um, just disability in general and children with disabilities. Of course growing up in India, I end still to this day, I feel very connected to the society and the culture there and you know, reading a lot of accounts of how poorly children and disabilities are treated or how social perception plays a pivotal role and not bringing students into the education system just because it might need a little bit more help or a little bit more guidance.

18:11 Um, that was definitely shocking to me because growing up I had never experienced that, you know, I, no one in my family has a disability. I just never seen that side of the education system. Um, but kind of seeing how almost close minded India can be, um, to children with disabilities was definitely very disheartening. But on the flip side, seeing the nonprofits and all these I agencies speaking up and kind of having a voice for these students has also been inspiring. So I still look at kind of other stuff. I look at a lot of legal stuff, a lot of um, research that goes into children's special needs. But I have no, my passion kind of lies within the policy and the social perception of the antislavery looked at the legal stuff as you call it. Have there been suits that have been brought on behalf of certain children to further the prime?

19:06 Sure, there have. I just have not seen any major ones. Um, a lot of, a lot of like legal stuff pertaining to children disabilities comes in the form of laws passed by the Indian government who I see. Um, so I did look into that a little bit. I personally do not have a connection to anything legal. That's just not what I find. Interesting. So on the social policy, which you do find interesting, what have been some of the steps there that have made progress? So social policy. So one of the biggest things kind of going into this project was how can I put the bias that I have from my own country aside and just look at the straight facts. And that's hard. Definitely very, very hard to do. So a lot of the initial things that I did kind of uncover, we're not surprising to me.

19:51 A lot of the, you know, the huge population of India just doesn't believe children with disabilities or just people with disabilities to be equal to quote normal, um, individuals. And that, that was not something that was shocking to me. You know, I had experienced that when I was younger. Um, but there were also things that were almost surprising in a way that, um, a lot of teachers and like education systems aren't willing to open up their curriculum or take that extra step and provide financial aid for these students with disabilities. So it was not anything out of the ordinary. And I can't think of any statistics off the top of my head, but there's, there's a lot of things in India that I had already known from being little. But seeing them out on paper was definitely surprising. Um, and sometimes, you know, I'd find things like how India society has is slowly walking towards being more welcoming and you know, regarding, uh, or understanding that life is not exactly a race.

20:58 We're just, the winner wins everything, you know. Um, we're India slowly going towards a, you know, everyone wins in their own way by crossing the finish line and you know, stuff like that. When you see it on paper, when you see that research backs, things like that, it's very inspiring knowing that, you know, India is regarded as a very like, close minded society. But that's, that's not everything that it is and you know, it, it's definitely, it's confusing almost sometimes because you find a lot of contradicting things. But, well, what I admire about you, any of us by the age of eight and you were in India, living with your grandparents until then has formed her idea of the world in ways that usually stay with us for the rest of our lives. But here you are going back and examining those precepts that you grew up with and kind of opening them up in shining a light and seeing what they mean.

21:54 I think that's just wonderful. Thank you. I Dunno, it's growing up in India. It's definitely played a huge role in my life and I still, I feel very much connected to the country and kind of my experiences with Sabrina. Um, I don't think that if I hadn't gone back to India, I don't think I would have been here. I'm studying special education system. I initially for this project last year warrant you study healthcare in developing countries. Um, but just kind of seeing how different it can be in other parts of the world, especially a part of the world that I consider my own home and where I grew up with. You know, there was where I took my first steps in my own education and just seeing how, um, almost bad and just under developed the system can be, um, was definitely something that I was like, I can't not do something about this.

22:46 What does your family think about your work? I know you mentioned your grandfather's the one that suggested you work in that program for the summer. What, what are, what are their thoughts on this? Well, my parents definitely, I don't think they understood how important camp was to me until they like a few weeks into it. And that's just all I could think about, you know. Um, it was, I think them not having experience with children with disabilities, um, made it a little bit harder for them to understand, but I think they caught on really, really quickly how involved I was and how passionate I boast about both camp here in just a school that I worked at and my parents didn't get to see the school that I worked at cause I was there with my grandparents. Um, but I, I've shown them pictures and I've, you know, they're just as shocked as me about, you know, how much they lack, but they understand kind of my need to give back because that's just how I've always been.

23:43 Um, and I only spent two weeks there, but the fact that they know that I came back and I'm still researching it and I'm still trying to find my own way to give back. Um, I think they're very, very supportive and understanding of how much it means to me. That's great. Well, we're almost running out of time and I want to be sure you get to mention your go fund me page in case there's somebody listening wants to go fund you get. So a lot of, um, what EMC kind of stands for is we do research but um, to also find a way to incorporate that research into giving back or producing something tangible. Um, and when I did this project, I initially came in with that idea. You know, it wasn't, it wasn't research that led me to the idea. Um, but when I was working at this school, almost the first thing that I realized was, you know, money, you would fix so many, so much of the, you know, the wrong that's here and it would help with a lot of the fundamental resources and you know, supplies and stuff like that.

24:43 So the monetary value was definitely very, very important. It was almost the most impact, like apparent thing that I could find when I came back here. Um, and the Gulf on me is almost a campaign. It's called dollars for the gun and the got into the school that I worked at. And could you spell that? So people are, so it's d, I g a n. T. And does that mean something in a different language? Ah, I'm not sure. I have not looked into that. I should, but, uh, the kind of the campaign is not just to raise money. It's also a way for me to show my peers and just people on that we'll never get to experience what it's like in India. I never get to see the conditions that are there. Um, and just kind of opened their eyes to that cause I think that's a very valuable thing to do and just kind of, um, if I can do that through pictures and through videos and my own narrative, that's, that means a lot to me and it almost means more than raising money cause I want to share my experiences and I want to hopefully, um, widened someone else's worldview.

25:45 But the money aspect, every cent and every dollar that I raise goes right back to the school to helping the teachers to getting some new resources, sanitary bathrooms, um, teaching resources, just things that every child should have access to. So you are not just raising funds, you're raising consciousness and just you might have closing thoughts. I feel so bad. We're out of time already. I just was hoping you could discuss a little about yourself as a photographer because I found the pictures you took very, very moving. Just what's it, how do you go about taking pictures and why? I think photography has always been something very, very close to my heart because I'm, I'm a firm believer and a picture says more than a thousand words. Um, and that that's something I keep coming back to my research project. But when I was looking, when I was there, I knew that I wanted to document this because it's not something that my words could ever have done.

26:41 Justice coming back, I could have been able to put it into words and I took the pictures. You know, I would just walk around with my, my iPhone and just take pictures or take videos of these kids because you know, kind of even being able to see them through a lens was better than me trying to explain what it was like there because I could never capture the emotion. I can never capture children sitting around a care on board and that, that that's it for bringing them happiness. Like it was all the really, really small moments that I knew I could capture the phone. And if that was the one thing that I could bring back to the other side of the world and be like, here, this is, this is what it's like, then that's just kind of what I did. I, I try to just incorporate the smallest things, you know, winning a game or sitting on a swing or a slide picture or chest or kids clapping.

27:35 You know, it was, it was things like that, that they weren't anything grant or anything momentum Lewis. They were just, they were just sincere. They were very sincere moments that, you know, I had seen that had made the greatest impact and those were the ones that I want to show other people. Do you have any closing words for us? So now, um, yeah, I think, you know, my research has played a really, really big role and who I want to become and kind of the problem that I want to solve. And if there's one thing that, you know, the entire special education in the world of disabilities has kind of shown is that, you know, equality is lies at the heart of talking about what's not right. And what's not, you know, fair. Um, and even in the u s special education system is by no means perfect. But you look at other countries, especially in India, where it's developing, and I think, you know, equality is not something that's impossible there or the u us, it just needs to be talked about. And you know, if we can address the elephant in the room, that's, that's greater than anything else. Well, you've done just that. Thank you. Yes, of course. Thank you for having me.