Episode 5 Transcript

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Sarah Todd:

Hi, I'm Sarah Todd Hammer, and this is Positively Opposite. The podcast where you'll discover through the experience and knowledge of myself and others that disability is not always a negative thing — but in fact, it can be quite the opposite.

 

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Sarah Todd:

Hi everyone, and welcome back to the Positively Opposite podcast! Today I have Malavika Kalani with me. Malavika is one of my friends from college. We first met in March and have since become good friends. Malavika is an international student from India, and she also has a disability. She was born with caudal regression syndrome. We've bonded over discussions related to disability, and she always has great insight, so I'm really looking forward to our conversation today. Malavika, it's so good to see you today! 

 

Malavika:

Hi, it's good to see you too. 

 

Sarah Todd:

Thank you so much for being here with me! I'm so excited to chat with you. So we can just get right on into the questions for today.

 

Malavika:

Yes, I'm really excited. 

 

Sarah Todd:

So, since you were born with your disability and I was not born with mine, I imagine your disability experience has differed from mine in some ways. So I'm curious about how you first realized you were disabled. When did you first realize you were disabled, and when did you start identifying as disabled? 

 

Malavika:

So I think like you said, being born with a disability is obviously very different from having a disability later on in your life. But I think my disability was never like a life-changing experience, because I feel like I've not known what it's like to be able-bodied. So this is kind of like the normal for me. And now, if I was told to get rid of my walker and start walking without it, that would probably be a very difficult transition. So I kind of just view my disability as a part of my body, and I would not want it any other way. And so when did I start identifying as disabled... I really don't know the exact point of my life where this happened, but I think probably in school when you're sort of made to feel like, “Okay, you should not do this” or “You should refrain from doing this particular activity.” So one of those incidents where I was made to feel like, “Okay, I'm a little different” I think was probably when I started identifying as disabled. 

 

Sarah Todd:

Yeah, that's so interesting. That's honestly kind of what I was expecting you to say, because like you said, you don't know what it's like to not be disabled. So that's not something that you're just constantly thinking about. And I think that's something a lot of non-disabled people struggle to recognize is people can be okay being disabled and not know any different.

 

Malavika:

I think in the future if there's a surgery that makes me able-bodied, I would not want to do that, because that would be a very hard transition for me. So yeah, I think at this point, I can just find more ways to make my life more convenient rather than finding a way to remove my disability.

 

Sarah Todd:

Yeah, like the focus on accommodating you and eliminating barriers would be much more useful than trying to find a cure for your disability. And I honestly feel the same way about mine even though I became disabled when I was eight years old. I'm not thinking about wanting a cure, and if it was offered to me, I'm not sure that I would take it. I honestly don't think I would, because that's just not something that's important to me. I would rather have people focus on making the world more accessible for me than trying to help me move my arms and hands, so I definitely feel the same way about that. So how has your journey been with developing a positive mindset around your own disability journey? How do you think this journey has differed for yourself versus people like me who aren't born disabled? 

 

Malavika:

So I'm really grateful that I have a very supportive family and an amazing set of friends, and I think a large part of developing that positive mindset has to do with them, because they have really helped me. They've never made me feel like, “Okay, you can't do this” or “You can't do that.” Especially my parents — they have never questioned any decision that I've made or been like, “Okay, you shouldn't be doing this” or “You can't do this,” which I think plays a huge role in sort of having that positive mindset. And I think even in school I have pretty much done everything that an able-bodied student would do. But just finding my own way to do all these activities and for people to kind of acknowledge the fact that everyone can have different ways of doing certain things... I think that helps in developing that positive mindset. And like I said for the first question, I think for you, it must have been like a life-changing experience — correct me if I'm wrong.

 

Sarah Todd:

Definitely. 

 

Malavika:

So if I were to be disabled later on in my life, I would also have a hard time developing a positive mindset, because I have known what it's like to be able-bodied. But since that's not my case. I know that this is who I am, and it's just never been hard or to kind of find ways to work around that. 

 

Sarah Todd:

Yeah, it makes perfect sense, because you've never known any different, as we were saying before. So the journey for you could have been a lot easier. But as you also mentioned, you have that support system of your family and friends, which is amazing, because even if you're born disabled, it can be very difficult to accept your disability if you don't have a support system or if you don't have hobbies like you do with your dancing and acting and all of that. So I think that's really great that you've had those things help make you happy and just accept your disability. 

 

Malavika:

Yeah, and I feel like all of the friends and family are a huge part of it, but a lot of it has to come from yourself like just taking every day as it comes and trying to figure out what can you do or what can you use that would help you lead your life more conveniently. And I feel like disabled people are really creative, and that is one thing that really helps, especially when you're trying to figure out new ways to even do the smallest of activities on a day-to-day basis. 

 

Sarah Todd:

Yeah, that's so true. We are really creative. We find the wildest ways to accomplish things, and I love that about our community. Because we're almost forced to do that, because we have to find a way to do things, and it makes us really creative and innovative people. Like, just finding ways to do things, being creative, and like you said, taking every day as it comes. You're just living your life, and you're gonna have challenges every day because of your disability, but you're going to find ways to get through the challenges. 

 

Malavika:

Exactly. 

 

Sarah Todd:

So, speaking of the challenges of being disabled, I'm curious what accessibility is like in India versus the U.S. and if people's attitudes towards the disability community are different in India versus here? 

 

Malavika:

Yeah, this is a very important question. So actually, one of the reasons why I really wanted to come to the U.S. for my college was obviously the liberal arts education system, but also the infrastructure in the U.S. and how accessible it is. So I've been to the U.S. twice before I actually came here for college, and I kind of just started seeing a lot of differences between the U.S. and  India. So I think specifically Davidson College — they have been very helpful in trying to figure out what is it that can help me out. Although there was not any separate accommodation that was made for me, but just having the ability to move around on my own and not getting exhausted because I get to use my mobility scooter a lot more than I did here in India because of the lack of ramps here — that plays a huge part, I think. So when I got to Davidson, I knew that I would be using my mobility scooter more extensively than I have here in India, because the infrastructure just does not support any scooters like that. So, yeah, having ramps everywhere, having elevators everywhere just made me feel like I can be so much more independent. And also I realized that I was not feeling as exhausted as I used to when I was on my walker 24/7, so that really helped. And also, I think when I took my on campus job in the dining hall at Davidson, I really liked the fact that no one ever questioned what I can do and what I cannot do. They just took me in as any other employee, which is what I really like. But if I were to do that in India, I don't think I would have been able to do that, because it's not accessible, and I obviously can't work on my walker for longer times, and the scooter enables me to do so much more. And I think in Davidson, I have seen older people use that mobility scooter, and I think that makes me feel like, “Okay, there are other people like me,” which is why they have infrastructures like that. Whereas in India, I feel like even though there are other disabled people like me, there's still a long way to go for them to kind of build that infrastructure, because there's just a lack of awareness in India. And I know that some colleges in India that are very new and fairly progressive are kind of working towards being more inclusive, but there's still a long way to go. But yeah, I think in the future, it definitely gets better here. 

 

Sarah Todd:

That's all so interesting. I remember when we first started talking, you told me that one of the reasons you wanted to come to school in the U.S. was because the accessibility was better, so I knew you'd have a lot to say about this. And I know how much of a difference accessibility makes, but hearing you speak about it just really highlights how important accessibility is. And I think it's so wild that even in 2021, we still have places that don't have ramps and elevators, and it's awful to think about how people like you and so many other people just can't be independent or as independent because places aren't built for us.

 

Malavika:

Yeah, exactly. 

 

Sarah Todd:

And I love what you said about your job at Davidson, too. How no one questioned if you could do the job or why you were doing the job. And so does that mean in India... are disabled people not hired in India? Is that unusual? 

 

Malavika:

I don't think that's unusual, but I think that people here generally have a lot of questions about, “Okay…” I think the first impression — at least from what I have experienced — is mostly having this partial sort of impression about you that, “Oh, it's sad that this happened to you,” but what they don't realize is that there's a lot of positive aspects about it, too, that you just kind of get to figure out life on your own. But in the U.S. especially — whatever little time I've spent on Davidson — I think no one ever questioned that. And whatever questions they have had, they've been questions that I would be happy to answer. Like, if you're genuinely curious about something, I would love to answer that question, but if you're just like, “Oh, I'm sorry that this happened to you,” that's not something  anyone would appreciate, because you yourself are not sad about it, so. 

 

Sarah Todd:

Right, yeah, a lot of non-disabled people don't get that we're perfectly fine being the way we are. And of course, that's not every disabled person's view, but a lot of us do come to that point of acceptance, and I think that's just a difficult thing for them to grasp, because they don't know what it's like to be disabled. So they just have that fear, because it's this unknown thing, and they have a lot of misconceptions and stereotypes in their mind. So for them, it's just so weird to think that we're perfectly fine being disabled and might even be happy being disabled. But I also think it's so interesting that you said in the U.S. you feel like people aren't questioning that happiness as much. Because for me, I've only ever lived in the U.S., so I only really have experience with the attitudes here. But I do feel like for me, people aren't outwardly saying things as much, because when you look at me it's not as obvious I have a disability. But I know some people will experience people saying, “Oh, I'd rather not live if I were disabled,” and awful things like that. But it's interesting you feel like in India, it happens a lot more than in the U.S. 

 

Malavika:

Yeah, I think people here... they definitely don't have any negative intentions as such, but just that mindset — that inclusive mindset is going to take some time, and I think it's because you don't see a lot of disabled people here on a day-to-day basis, which is why when you actually see one, you have a lot of questions in your mind. But yeah ,I don't think it's rude. It's just a little  overwhelming. 

 

Sarah Todd:

What do you think could be done to improve accessibility in India and those attitudes in India? Of course, building more ramps and elevators would be an improvement in India, but how come India isn't there yet? Why do you think India's so behind the U.S.? 

 

Malavika:

Yeah, this is a hard question, but I feel like people just don't put a lot of thought into this or even consider that there can be people who aren't able-bodied and what they might need. And I also think that people don't understand how important independence is for disabled people. So I think just events or campaigns that could help spread that awareness would be one way to bring that change. And I used to work with this NGO when I was in Kolkata in high school, and it was for children with autism and with Down Syndrome. And I think we used to have a lot of  awareness events, where we would actually help able-bodied people understand what it's like to  have any kind of disability. And I also feel like schools need to be more and more inclusive, which is not the case here. 

 

Sarah Todd:

That's so interesting to me. It's so awful that places can be so behind on things like that, because it really does hurt people's quality of life and ability to be independent. But hopefully as things get more progressive, things could change, because I do feel like it could become a little bit of a cycle. Because if things aren't accessible, you won't have as many disabled people able to campaign and being out there and working and doing things, and then people won't see the disability representation, and then they won't think there's a huge disabled population, and then they won't think it's important to make things accessible. So I just feel like it could be this whole cycle. So hopefully things improve just in general in terms of accessibility and attitudes over there. And the U.S. certainly has a lot of work to do as well, but I do feel like it's a common theme when I speak to people from other countries — they feel like the U.S. is definitely more accessible than their country. 

 

Malavika:

Yes, that is true.

 

Sarah Todd:

So you mentioned a little bit about college, and I'm really interested to know for you what going to college as a disabled student has been like so far, and how did you prepare for college beforehand knowing that you're a disabled student, and did you have any worries beforehand? And if you did, what were those worries? And how did you combat those worries and all of that?

 

Malavika:

So if I'm being honest, I didn't really have any worries apart from just being accepted into the college, because I felt like, “Okay, once I'm accepted, I know that these things are going to be figured out when I talk to the accessibility department and stuff like that.” But my parents had a lot of apprehensions, which I know they don't express as much, but I can understand why you would have those apprehensions, because U.S. is really far from India. And yeah, that was one thing. But I feel like just talking to a lot of people in Davidson who would help me get the right resources made my college experience much more smooth. And I think the biggest worry was just carrying my luggage on my own and traveling and flying on my own for the first time, which I did when I came back home this summer. 

 

Sarah Todd:

Wow! 

 

Malavika:

So, yeah, that was a huge apprehension that my parents had, but hopefully that's all figured out now, because I really had a lot of fun flying on my own from U.S. to India and just kind of talking to the airport authorities about my scooter and explaining to them how you need to handle it. I think it's a great learning experience for me and for them as well, hopefully. So, yeah, that was one of the main worries, which is now figured out. So I really did not have any worries beforehand.

 

Sarah Todd:

That's so great! I'm so glad you weren't worried and you were more so just excited to come, because it's such a great experience. But I feel like it's nerve-wracking for all new college students — especially disabled students — since we have those extra worries. So I love that you really just had this great mindset from the beginning and that it all worked out well. 

 

Malavika:

Yeah, but actually, I can think of an incident now. So when my parents left Davidson, that same day, like within an hour, my scooter charger didn't work. And I think I've told you this. 

 

Sarah Todd:

Yes, I remember. 

 

Malavika:

I think now that I think about my Spring semester — that was one single day where I was on the verge of crying, because of course my scooter was so important. But my host family really helped me figure that out, and yeah. So I think I don't really prepare for these incidents, so if it happens, you just take it as it comes and try to be calm. 

 

Sarah Todd:

Yeah, that must have been so anxiety-inducing, because you hadn't even been here very long, and then trying to figure that out... I'm so glad your host family was able to help you. But that definitely would have been very frightening. 

 

Malavika:

Yeah, yeah. 

 

Sarah Todd:

I love all that you mentioned. I think the traveling is definitely an important thing, because as you know, airlines are not very careful with mobility aids. And I'm glad that your scooter survived the flight. And it's amazing you flew on your own. I have never flown on my own. I feel like it would be a little bit scary — especially since I need help with a few things, like buckling my seatbelt on the flight, things like that. So that's amazing you were able to do that and really enjoyed it, too. 

 

Malavika:

Yes. 

 

Sarah Todd:

So before you even came to Davidson, were you already working on getting your accommodations set in place, and how did you know to contact the disability office? How did all of that work out for you? 

 

Malavika:

So I think I don't really remember this properly, but it was one of the international admissions officer who connected me to Beth. And I had I guess two Zoom calls with Beth just trying to figure out what I need. And she asked me a lot of questions, and we figured out exactly the accommodations that I need for every semester so that when I renew my housing accommodation, I don't have to have the same conversation with her again, so she knows exactly what I need. So yeah, that was very helpful. And even when I came here, I had a check-in meeting with her to just see if I can navigate through the campus properly and if everything is accessible as I would like it to be. 

 

Sarah Todd:

Yeah, that's great. I guess I kind of had a similar experience, because I connected with Beth early on, and we Zoomed together and just kind of figured things out, and she was super helpful with my housing accommodations and then academic accommodations, so I'm glad that she did the same for you. And once you've been at college, have you encountered any unexpected challenges you want to share? Or any particularly amazing experiences you want to talk about as a disabled student? 

 

Malavika:

I think the biggest part for me, especially now that I physically get to be on campus, was just that I can use my scooter wherever I want, which is a huge difference, because I don't feel as exhausted. So I can actually feel the difference. I don't feel as physically exhausted. And the scooter just helps me so much with just carrying my own plate of food or carrying anything on my own, basically. And even going to Main Street — if I want to go alone, and yeah, those things really help no matter how long the distances to places. I don't really feel it that much now because of my scooter, so that is one big positive experience of mine this semester and hopefully in the coming years as well at Davidson.I feel like I've pretty much been able to do everything that I wanted to at Davidson, which is exactly what I wanted from my college experience in the U.S. I don't want to be questioned that, “Okay, can you do this?” “Can you do that?” And although I feel like those things might have happened, but they were minor enough for me to neglect them, very grateful that I get to be here. 

 

Sarah Todd:

Oh, I'm so happy. I'm so glad it's been such a good experience for you. And I'm so glad you've gotten to come, because we wouldn't have met each other! So yeah, I'm so glad that you've had a great experience. So what advice do you have for other disabled college students? 

 

Malavika:

Okay, I think firstly for disabled college students, you should try to figure out what kind of college do you want. Like, do you want a big school or a small liberal arts college. I think figuring that out is very important for you to narrow down your choices. And then I think it's very important to find the right resources for you to figure out how you can make your college experience comfortable and accessible at the same time. And I think it's also important to reach out to people and just don't be apprehensive about sharing any problem that you face, because I feel like the college — they are meant to be accessible, and they are bound to give you that accessibility. So if you ask them for an accessible feature, and if that needs to be installed, don't view it as a favor that they are doing, okay, because I think it's something that they are supposed to do. And it's not really a favor if you need it. You need it, and you don't need to be shy about it, or you don't need to be apprehensive about asking the college for it, because it's only going to help you lead a more comfortable college life. So just being assertive with what your needs are and what accessible features you want on a day-to-day basis, because in college you anyway have so much to figure out in terms of academics and extracurricular. You don't want your physical or any other disability to sort of hamper your day-to-day living. So just reaching out to the right resources and discussing that. 

 

Sarah Todd:

That's so important. You really have to advocate for yourself as a disabled person, which is not always easy, and it's not completely fair that we have to do it so much just to get what we need. But I love what you said about not viewing the accommodations as a favor, because it's something you need. I think that's super important. I think we can definitely be grateful for our accommodations and recognize the work that it took for the school to put them in, but it shouldn't be something we view as like a luxury, because it's something we need. So I really love how you put that. So, speaking of accommodations and having to advocate for yourself, what do you think could be done to make the college experience easier for disabled students? 

 

Malavika:

I think the most important part is the infrastructure. Like even if disabled students need to ask for the simplest of things like ramps or elevators or the automatic buttons for doors to open, that can be really hard, because you need that so extensively. And if you need to ask for that every single time you use it, it can be really hard, and people need to understand that these things  are super important. So as long as the college acknowledges that and puts in the effort to install certain features for disabled students that is kind of common to everybody, that could be one thing that would make the college experience easier. And another thing would probably be not  not discriminating, which is very important. And I think it's also kind of a learning experience for the college authorities to be sensitive at every step and not questioning what the disabled student wants. And also definitely not discriminating between the disabled students and the able-bodied students about, “Okay, if they can do this, and you can't do this.” That is something that you would not want to do, because that makes it really — I would say emotionally hard, at least for me. That's the last thing that I want to hear as a disabled person, and every college needs to acknowledge that and try not to do that. 

 

Sarah Todd:

Yeah, they really just need to be accepting of disabled students and realize that we're an asset to the college. We're not there making things harder for them. We're actually a benefit to the college, because as we mentioned before, disabled students are often very innovative and creative, and we have a lot to offer to the school — not just in terms of our disability experience, but even just as people outside of our disability experience. Davidson isn't easy to get into, so we're all clearly there because we deserve to be there, because we have something to offer. So I think that is definitely a good thing for the college to remember as well. 

 

Malavika:

Yeah. 

 

Sarah Todd:

So, I love to end the podcast on a positive note, and this is something I love asking all my disabled friends. So I'm just curious: for you, what has been the most positive aspect of your own disability experience? 

 

Malavika:

Okay, I think for the most part of it, just figuring out ways to do certain things has been the most positive aspect of my own disability experience, because I feel like it makes me think that I'm pretty much capable of doing anything that I set my mind to. And over the years, that has just helped me gain more confidence, especially now that I'm kind of living independently. That has made me feel that, “Okay, there's really nothing that I can think of that can sort of hinder my day-to-day living or also be an obstacle for my aspirations as long as I believe in myself,” which  I kind of do. I think I can do whatever I want. And that has been the most positive aspect, because had it not been for my disability, I wouldn't have had that kind of mindset. And like I said, a large part of it has been my parents, and I can't really not acknowledge that, because they have also helped me kind of have that mindset. So that has been the most positive aspect: just kind of having that. A strong sense of belief in yourself and the confidence to advocate for what you need. 

 

Sarah Todd:

I love that so much. I feel similarly. I feel like I definitely have realized that I have so many challenges because of my disability that I wouldn't have had if I didn't have a disability ,and although they're difficult, they've made me realize that I can find ways to do things, and I've learned so much about myself and just about the community and disability as a whole through getting through these challenges. So I definitely feel similarly, and I think that's a really great positive aspect that you have discovered about yourself. 

 

Malavika:

Yes. 

 

Sarah Todd:

Well, this has been a great conversation. I've learned so much about you and about India and accessibility. This was so fun, so thank you so much for being on my podcast Malavika!

 

Malavika:

Thank you so much! I've never done something like this, so this was a great experience ,and thank you for having me. 

 

Sarah Todd:

Of course! This was so fun. 

 

Sarah Todd:

Thank you so much for tuning in to this week's episode of Positively Opposite! If you'd like to connect with me, visit my website, sarahtoddhammer.com. Transcripts of each episode will be available there. Also be sure to follow the Positively Opposite Instagram for all the latest updates and special content regarding the podcast. I hope you'll join me and another amazing guest at the next episode!

 

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