Episode 3: Dhanya Ravi

Transcript

Introduction

So, tune in and enjoy the conversation!

Transcript:

Trinayani:

Hello and Namaskar. I am Aastha Shah, an intern at NGO Trinayani and with me, I have Ritika Sahni, the Founder Trustee of NGO Trinayani. Today, we are glad to be in conversation with Dhanya Ravi, who is also called as India’s Glass Woman. Ms Ravi is born and now lives with a rare genetic disorder called as Osteogenesis Imperfecta (OI), commonly called as the brittle bone disease. She is a recipient of State and National awards. She is a two time TEDx and JoshTalk speaker, works as an executive for EnAble India organization and currently, she is active in mobilization and sensitization for OI, rare genetic diseases and disability community individually and in collaboration with different non-profit organizations both in India and the United States. She is also one of the founder trustees of an in-house NGO called as the Aasmaan Foundation Trust. Let’s jump right into the conversation with her. It is an absolute pleasure to have you here today, how are you doing today?

Dhanya Ravi:

I’m good. Thank you so much for having me, it’s such a great joy to always uh you know get along with any activity uh done by Ritika. So, I’m so overjoyed for this conversation.

Trinayani:

First of all, I am very interested, before you answer anything, why are you called as India's Glass Woman?

Dhanya Ravi:

Ha ha ha, I actually don't know why am I called as India’s Glass Woman. So, it all started up from an article I would say. So, when I just uh came into the sector, I’ve been part of some newspaper uh articles and all of that. So, as my condition is that until teenage my bones used to fracture uh without any reason just like a glass and probably that triggered the journalist to name it as India's Glass Woman and from then it just caught as a fire.

Trinayani:

It makes sense. So now that you've talked about this, let's first get our audiences to understand what is Osteogenesis Imperfecta, commonly known as brittle bone disease?

Dhanya Ravi:

Osteogenesis Imperfecta is uh my forever companion. (Laughs) Okay, yeah, ? that, it’s a rare genetic disease and until teenage, uh the bones are extremely fragile. And, uh in simple terms I would say uh I have a type…lack of a deficiency something that it's a Collagen deficiency which you all have something that I do not have and that's a reason the bones are extremely fragile but the beautiful part of OI is that until teenage, the bones are extremely fragile and the fractures are very more and way more than what we can really imagine. But after that the fracture tendency reduces. So uh so my breakage of bones now have reduced a lot as I've now grown up. And um, during this OI, uh living with OI is also like, quite difficult. We have to really know how to uh know as from an infant and how to take care because there's like a lot of deformities that comes into the structure of a physical uh bone and the density and monitoring so uh yeah it just needs some care and love throughout the life.

Trinayani:

I love the way you say it. It needs care and love uh because it's your companion. Ah Dhanya I'm going to request you to do something for our audiences. Um, would you be able to uh describe yourself, the way you are so that people are aware of what you look like. Um, and ah and and be able to uh understand um at least one person who has OI.

Dhanya Ravi:

Ah, so, lean. I am born with type 3. So OI has a different types like type 1 to type 7 to type 12 and I'm born with type 3 and I am a very short in person. I use a wheelchair, uh both manual and powered wheelchair; a manual on my own and uh I have couple of deformities uh because uh as I said until teenage years, lot of fractures that I went through so in that sense, yeah. But yeah, I’ve a very medium skin tone person and I’ve a very shoulderlike hair and that's about me.

Trinayani:

No, no, you forgot to mention that you are one pretty woman, by the way. I have seen you dressed up uh and and walking in and out of stage and performances with Elan so I think people need to know that. Um, and and that is ah you know your entire personality your voice it all excludes uh the spirit ah of with which you live and conduct yourself Dhanya. That's why I said it was…It's just wonderful to have you ah speak and clarify so many things for our audiences. Now that you um, ah, live with this and you mentioned that till teenager you did have uh many episodes of many uh breakages. How was the academics? How was your schooling? How was how was how did you go about with the education that you did? Uh we would love to know that.

Dhanya Ravi:

So education wise I would say I'm not super success uh because during the times of my uh education time the so-called childhood education or mainstream education or something that I could not catch up on a very uh happy note because uh the schools were not inclusive and um the word was just in the dictionary during my times of schooling and even special schools actually denied admission because of my disability and yeah, like given my mother or my parent wasn't too sure how important education is for a person like me so but they always want to give me some sense of uh ability to read and write but they were not too sure the importance of it. But although like my father tried with multiple schools in and around my residence but most of them denied because of my condition. So that's when um, you know a neighboring auntie came over and said I'm going to teach Dhanya no matter what you don't have to pay anything, voluntary I'm going to teach and that's when neighboring girl again said I will pass on give the books to all my academic books as I go to every year to the next so that Dhanya will be able to um you know, ah go through the same academic books that we kind of go in the school and uh no need to do any special customization and all of that. So that's it. I was homeschooled until tenth and Victoria aunty...Today if I am speaking well I would say it is because of her because she was so determined like how I need to speak and how I need to carry myself and um I I would say it was more often academic books that I have learned from her and after that yes I kind of took a break because my health was um um not so stable. So here I had a break for 3 to 4 years and then I later resumed with a a diploma and plus two with uh Indira Gandhi Open University and yeah, that's when I got into the digital sector era I would say during the times of 20s.

Trinayani:

So uh so Dhanya, Victoria auntie is still there? She, she is…

Dhanya Ravi:

Yes, yes.

Trinayani:

Ah she must be so proud of you then. Because you attribute so much of what you do to um to her. That's fantastic and that's why you know we say that it's, uh uh, there is so much good uh still there in the world and so many people willing to uh participate, contribute uh to uh lives the way Victoria Auntie has done for your…for you. I'm glad you mentioned her. I'm glad you mentioned her and once this when when we put this up, you must have her listen to uh this podcast. It will be so wonderful. Your question. Yeah since you just talked about contribution and education, how have you taken care of all of this through your foundation through the work you do, Aasman Foundation? And how successful has, how successful do you think it has been till date?

Dhanya Ravi:

I would say um whatever I'm doing now, um is the kind of uh grace or support that I receive from people and I’m just giving back and that's what I'm doing and coming from Victoria auntie itself like I used to think like how many of us, today, uh do we have the sense of what another person and the neighboringhood needs some support. Like most of us are so much within ourselves and our own world. What many really know, so the kind of situational awareness that she brought as something I really admire. And talking about Aasman Foundation trust, it's an in-house NGO like you already mentioned and it is managed by 2 of my friends and myself so uh we three work on healthcare and media sector but ah on a professional way we are in that sense, but, this is something very intimately we like to contribute in our own time and pace with unique events or maybe assistive aids of sponsorship. So, so far we are not in a space, we are not in a vision to uh make some count of anything. But we are in the mission of making something unique um on a very um alternative note I would say. So in that sense that till date we could spread lot of awareness about um about clothing, accessible clothing awareness what beauty means for a person with disability and also like giving importance of um uh supporting persons with disability with the mobility maybe towards employment or throughout the education. We just try to fill that gap and more importantly, uh, we are also like doing some set of counseling to special parents, single parents, uh single special parents uh because I feel uh that is a lot as a child of PwD go through and uh as a mother or as a father of a single parent. It's even more. So just tackling that we kind of embrace them for who they are and trying to give some light to their life.

Trinayani:

So Dhanya since you mentioned accessible clothing, uh, you also mentioned uh you that you are a a short person using a wheelchair so it's, it’s in and I've seen you always very immaculately dressed. So how do you go about designing your clothes? Do you give your own designs to your tailor?

Dhanya Ravi:

I need to thank my personal designer for that. So coming from there at least I would say until 20 to 25 years or 24 years when you actually really look back to my old photographs you will understand that, uh, it has been extremely hard. For me to get a dress, especially if I'm going for any occasion. It has been so hard like I still remember like how I and my parents used to go from shop to shop to get some good clothing for me because uh it actually doesn't fit the way it would has to and uh because of many reason and, so this has been a quite big challenge but later now designers have come boutiques have come and yeah, but their cost expenses are really more uh but yeah yeah I kind of have a very fair deal with my designer so going.

Trinayani:

Ha ha ha ha, that's nice, that's lovely to hear that all of us, all our women, should have fair deals with designers. That's the only way to go about it. Now since you were talking about designing, we're talking about looking good and beauty, um uh what and nobody knows this better than you because I'm sure you've spoken about this, about how a lot of people assume that people with disabilities are essentially ah asexual, what are your uh mm you know, views on sex and sexuality and uh the myths surrounding sex sex and sexuality as far as persons with disabilities are concerned?

Dhanya Ravi:

So I would say that it is still, there is a lot that has changed over the years like I would say technology has helped PwD in finding it, finding their own identity and working on that and uh especially uh I one of the like I kind of be more with very vulnerable people and also from a very ground level ruler area. So what kind, what the kind of situations that I see is that most of them are very very scared to speak for themselves because they are dependent to their parents and they are not able to actually share what they are. But I think NGOs play a a crucial role in terms of making this more identity fight and uh but it’s also like there is 2 things that I kind of uh uh see and recognize in the last few years. One is that, as I said, the fear of speaking of what they feel uh because the parents are still in a space of ‘no don’t want to discuss’ or they are different and the feelings for them or the kind of identity for them are quite different and that is still a gap that exists between the child and the parent and secondly um, is that uh NGOs nowadays, because they come up with all these counseling and identification sessions, so this has also like partly held the parent to ah, give them the space that they need during the age of growing up as an adult teenager and all of that. So there is a change that has been saying so and uh fourthly I would like and like I always felt like there are persons with disability uh who are actually not so much aware about how their health can go forward. They might be in a relationship but because of the lack of sex orientation, there is a space where the health doesn't support it. It goes to uh uh uh in a more different other way, I’m not going to take it too biological. Uh but I feel, so it's very important that uh just like in able child inclusive education or all of it matters a lot and it's also high time uh to get into this kind of awareness between the parents and child and also the child know the self advocacy part and given the space for them. Not um, you know, embracing them for who they are.

Trinayani:

You're absolutely right Dhanya, we need to start having these conversations. Um now, uh Astha had kept asking me that, you know, because I was talking to her about you so she had this one question which I think she should ask you. You know what, we just talked about a lot of myths, and let's get into myths regarding travel. It's always assumed that people with disabilities should not and cannot travel extensively but that's not in your case I mean you do travel extensively. What are your favorite parts of traveling? And um, do you find any challenges while traveling and how do you think you overcome them?

Dhanya Ravi:

I will not say that challenging, I would say it's more of thrilling. Uh so there used to be times where if I'm traveling with my mother or father like, I kind of look for accessibility a lot because for various reasons. But, because as they're getting old and it's very important that I should not stress their uh you know strength and physical, so I kind of look back a lot, focus on the accessibility part and all of that. But when I'm like with my friends I would say it has been more thrilling so there is two things that I personally have gone through. One is, why I said thrilling is um to check about the accessibility around uh in our country like how it has and then sometimes I am a person who use shades when I go out and it is very important because I cannot weather sunlight, and I get headache and all of that. So one of the reason I use shades is to keep my eyes cool and better healthwise and I would say but when I kind of like to go to a ruler places or maybe to a little more ah moderate spaces I could see people staring at me. Do I really need a shade? Do, you know these kind of questions that they have within them are very important, (laughs)

Trinayani:

Yeah, yeah, yeah, and you look thrilling. Let me tell you how thrilling you look with shades I've seen you with them.

Dhanya Ravi:

So it's very important like okay, it's it’s they don't give care so much and it's okay, they don't know so it's okay so I kind of like took some time for myself to make, and get, get myself to the place where I'm supposed to be and a thrilling part where I said is that in terms of these kind of sensitization. Uh but yes, eventually that is Ritika, it’s like lot that has changed over the years because that is not just me. Lot of people with disabilities advocating and voicing for their needs and now accessible beaches and and as you already know the purple festival where we saw lot of things which is like truly accessible, right? So that is a huge change that has come and a still challenging part is again sometimes when I see the uh metros or maybe the new buildings come up again with small small steps, you know, so it's very important like even if they see Universal Design ah is it really designed in that way like Metro is something that has been happening in a very...it's a new way of construction and infrastructure and I as a wheelchair user cannot use a metro uh without a person's support. I stayed uh from the platform to the train, I need a support to cross over so keeping this in mind I think it's very important. Uh there is a more that we need to do and I would say it's it’s thrilling in these kind of ways that I feel there is a more of more people has to come, evolve and work together to feel the change.

Trinayani:

They are, these are definitely better times uh Dhanya, I've been working in the sector for the last thirty years and when I started in 90 and right now the one thing that has definitely changed as you rightfully mentioned is self, self advocacy. Many people with disabilities are voicing their opinion and are fighting for their rights and making, making it a vocal about what should be done and what is not being done. You mentioned the purple fest and we should let the audience know that 2023 was the first ever disability festival organized by the State Commissioner's office uh in Goa, the disability commissioner ah Goa. Very very well attended with Dhanya Ravi um was a purple ambassador for persons with locomotor disabilities. Um India recognizes 21 disabilities and we had 21 ambassadors there for everybody to ah see and speak, discuss and interact with to understand and to demystify uh the disabilities that they had. You also mentioned accessible beaches and I think Chennai has one, correct Dhanya?

Dhanya Ravi:

Yes, Chennai has one. So Chennai and Goa, something that has been having on a permanent note but there are a few accessible beaches that has come in in other states as well. But maybe not in a very temp…uh permanent level but on a temporary note and quite accessible, not completely, but ah partly I would say.

Trinayani:

So since we're talking about travel, I know that you're trying to you've appealed to the government ah ah to for a scheme of allowance that promotes accessible cabs for people with Disabilities. Uh it is very obvious uh accessibility as I often say makes things possible for persons with Disabilities. So if you have accessible cabs immediately the social, the participation in the social life of someone with a disability enhances. Um, uh is there any update on that?

Dhanya Ravi:

No, definitely no. Again, it goes with a deal between the customer and the driver I would say. (Laughs).

Trinayani:

Um, you want to talk about Amritvarshini? Sure, I mean ah we understand that you got into your field of work through Amritvarshini, where you worked for around 7 to 8 years. Uh could you talk about your work at Amritvarshini, let's get our audience to actually understand what it is to begin with and furthermore could you tell us what learnings did you actually employ from there into your organization?

Dhanya Ravi:

Okay, ah so Amritvarshini started up, so when I was in a space where I was completely bedridden and I was on a rest during my teenage and that's when I happened to come across a newspaper article of a boy, but my condition who needs a medical surgery sponsorship. During that time I used to volunteer uh for uh, a group of people enthusiastic towards music. So I kind of wrote on the group like ‘hey came across this appeal, would you mind helping the child? I'm not earning now and because something is pulling me to support him.’ I started exchanging emails to the ah person who actually published the article for him. His name is Bino Devosia. Her (the person who wrote the article) name is Latha Iyer and she was working for a government sector and uh she immediately shared all the audience and she was so happy to be part of the group and eventually the support system for the fundraise happened, surgery happened.

Trinayani:

That's wonderful, uh Dhanya, which means you actually started ah started it off as a WhatsApp group and people started joining in. There were multiple stories and then it turned into an organization of which you were then on the board, correct?

Dhanya Ravi:

I was there as a member. I feel being on board is too much responsibility.

Trinayani:

(Laughs) All right. I can understand because as a motivational speaker and we uh uh audiences can hear you and they learn with which you speak. You go about addressing audiences and I'm sure, your, you speak not only on behalf of OI, someone like you actually speaks on behalf of the community as a whole of people with disabilities as community as a whole but on a lighter note ah Dhanya what are your hobbies? I mean besides uh besides uh talks that you give and and the work that you do with Aasman? Um how do you go about spending your days?

Dhanya Ravi:

My days are well occupied I would say. I love read uh listening to music and movies keeps me on. So if I have some free time I mostly spend it with movies and music and reading books. And yeah, sometimes.

Trinayani:

And so then what movies? What movies? What do you like?

Dhanya Ravi:

I love any movies that has some real good story. That's what I prefer.

Trinayani:

Um, what is the latest you've seen?

Dhanya Ravi:

I saw this um oh my god I forgot the name (laughs).

Trinayani:

No, was it was it, Tamil, or was it Hindi?

Dhanya Ravi:

The one with Aishwarya’s new one, no? R R R the, what’s the name of that? I forgot.

Trinayani:

Ah, I know that, that historical one, correct? Okay, and and who are your favorite actors in the in Tollywood, is that what it’s called? Yeah, I think so, yeah. Tamil industry.

Dhanya Ravi:

Tamil, I love Rajnikanth, um I don’t know Rajnikanth and Ajith I would say.

Trinayani:

What about music? What music do you like?

Dhanya Ravi:

I love classical music, so.

Trinayani:

Indian Classical or Carnatic classical?

Dhanya Ravi:

Carnatic classical

Trinayani:

Ah I can imagine. And do you go for performances there? I mean Chennai has uh, very robust culture scene, correct?

Dhanya Ravi:

Places I go for performance in winter, so I love uh singer Ashada. So I've been uh grown up by listening to his classical music a lot.

Trinayani:

Fantastic Dhanya, it's been so wonderful to have you. Any last words for our listeners as a motivational speaker as somebody who lives with OI, and advocates for OI or anything that you would like our audiences listening to this podcast here?

Dhanya Ravi:

Uh so I'm just not putting up as in philosophy or advisor note, rather I'm just sharing my thoughts coming from my own life experience that life is a gift so and we kind of live in a very privileged space, so it is very very important, be a person with disability or persons without disability to actually um you know honor and embrace ourselves for the way we are and use our own potential in terms of contribution, be it to yourself, to your family and society. So that is this urge of commitment that has to be grown up uh within yourself uh I would say because nowadays we feel very soon we get done with so many things and so it's very important to kind of like uh stay close to yourself to know what you're really good at and working on it and uh it's a space where we honor ourselves through which a lot of beautiful things can happen.

Trinayani:

Beautifully said, Dhanya, and so true for uh the younger generation. Um, I see so many people around me with questions um, with doubts. Ah, ah the way technology is improving and everything is within your grasp. Ah, similarly questions about whether I'm doing the right thing should I be doing this so you're so true, uh truly said that we each need to be aware of our privilege and what we do with those privileges. So thank you so much Dhanya. A pleasure on behalf of Aastha and me. Thank you so much for being part of the Trinayani podcast.

Dhanya Ravi:

Thank you so much. It was a great honor for me to be part of the Trinayani podcast and you lo, you do a lot for the community and I'm so happy I could be part of that on a very light way. Thank you so much.

Trinayani:

Thank you.

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