Transcript

Introduction:
“Inspiring others is more important in fighting them.”
No, this hasn’t been picked out of a self-help, inspirational book. These are the words of 22-year Dhruv Shirpurkar, who lives with Duchenne’s Muscular Dystrophy and is a wheelchair user. Dive into our conversation with him to not only educate yourself on this disability but to also gift yourself with his fresh perspective on life!

Transcript:

Trinayani:
Hello and Namaskar. Welcome to yet another episode of Trinayani’s podcast. I am Aastha Shah, an intern at NGO Trinayani and with me I have Ritika Sahni, the founder-trustee of NGO Trinayani, and we will be your hosts for today’s podcasts. We are happy to have with us, a friend of Trinayani, Dhruv Shirpurkar, for today’s podcast. Dhruv was born with a rare genetic disorder called as Duchenne’s Muscular Dystrophy, which leads to progressive degeneration of muscles leading to increasing disability. He currently runs a blog called as ‘Perspective’ on Wordpress.com and is also an amateur artist. He of course has been associated with Trinayani but also was a brand ambassador for the first Wheelchair Accessible Beach Festival in India, conducted in Goa by Umoja in 2017. He currently resides in Thane, Maharashtra with his parents. He also has written a book called as ‘Solace’ about which we shall get to know more during the course of our conversation. It is an absolute pleasure to have you with us today Dhruv. How are you doing today?

Dhruv:
Thank you, thank you for the kind introduction. I am doing good, how are you doing?

Trinayani:
We're doing really well as well, thank you so much. Whatever, however well we can be in a very hot city like Mumbai, where you are also residing. All right, lovely, so, for the first question Aastha has um something important to ask, which is also important for her to know. Right, so, since the purpose of this podcast is primarily to educate our audiences about multiple disabilities, could he please tell us what is Duchenne’s muscular dystrophy exactly and what has it been for you to live with it so far?

Dhruv:
Duchenne’s Muscular Dystrophy is a rare genetic disorder that causes progressive degeneration of muscles. So, this, this is, mainly targets the um skeletal muscles, the muscles that help us move our body around, the muscles of the heart and the breathing muscles. So, and the progressive nature of the disease means that over time the muscles get wasted away and this leads to increasing disability. The extent of the disability increases over time. And there are also other health complications due to the heart uh muscles being affected. So living with the disease is, has been a constant uphill uh battle, you might…you might say. In the early years I was not much aware of this. All I knew was that this that I’m some…a bit different from others and have to, you know, go for physiotherapy and stuff. So it was mainly the the early years for my, struggle of my parents. Now later on as I grew older I started understanding things. I needed to…started using a wheelchair. People then, you know, I got to…started realizing that people look at me differently. They treat me differently and for me more than the disease itself that was an issue; but why am I being treated separately? In my mind I'm just like others who maybe a bit different. Yes, I have some problems but a bit different. So that that was a really disturbing part but over time I uh because I met the right people you can say, because for me the whole journey has been so much worth the effort because I met so many different people uh the even in spite of the prejudices. The love that I got from so many quarters, right? From the teachers in the school, uh this professor in my college, that is all what made it work. Yes, there were challenges due to the, as the problems went on, I needed more assistance and everything but that's all right. It’s all a part of life.

Trinayani:
We love your attitude, Dhruv. Absolutely we just love your attitude and now that you've been ah so kind to the people who have ah um, who’ve been a part of your journey, tell us more about, tell us more about that.

Dhruv:
For me like ah how can I put it…to be honest, if you ask my parents um thing is that whenever some challenge came and they thought that no this is not possible anymore, some person somewhere, may some divine intervention we can say would come up and just help us out. For example, in my school the um, there were obviously various students from different backgrounds and naturally they are not, never interacted with a disabled person before and…and a society such that it is something that parents do not want their children to explore, they won’t voluntarily tell them that yes, there are people with disabilities also and that we should be cooperative and understanding towards them; so and…and also there after all I was small. They were all so small. They were quite immature and actually all students have so in that phase, there were a lot of misunderstandings, a lot of miscommunications. So, some like in the school I would get certain uh concessions like I would be allowed to come a bit late or given extra time in the exam. So, a lot of students would have a problem. Why is he getting special treatment? Why is this…it so unfair?
And that led to a lot of problems. So, in this phase, uh not only the teachers had but most importantly, the school counselor helped us , helped us a lot and not just because it's a part of her job profile, but it…she was involved very much personally into it and she’s, she’s still in touch. She still asks how am I doing and, you know, she’s always ready to help in any way she can. That's just one example. Then the teachers also, so whenever I go meet them after…so I went after a few years, the school to meet them, they are practically in tears, they were so happy to see me, so, and it's always that.

Trinayani:
Yeah so yeah, all that you've said, all that you've said Dhruv, makes it so clear and I'm so glad you said all this, that irrespective of the disability and in in your case as you said it is a degenerative one. Um, if you had to go to a regular school, inclusion is possible. People can move around and do the right things to make a person, uh uh to welcome the person into the classroom and I'm sure your being there ah had sensitized uh uh others around just by your presence of being around there on the wheelchair. So it makes so much of a difference to have a leader of a school who understands uh that uh everybody has a right to education who is able to provide the support that is required to see to it that that inclusion continues. And, you know, you suddenly don't leave school uh because it's not happening. So ah, what a wonderful um, I mean what a wonderful story I must say. At your age, you've been able to um impact other people also. You know, it's just that other people who've helped you, the very fact that you've been there, you've also created an impact in other people's lives when you said that there were tears in their eyes. So, they they got something out of having you as a student in their ah school. That's fantastic. Um in fact, you’ve answered so many questions for us even without our asking and I think that was perfect. Um, um, so school life and would it be the same for college life also, uh Dhruv? At college also was it was it an equally easy process for you?


Dhruv:
Ah, college was a bit diffi…difficult uh in the sense that a lot of our colleges are very old buildings. So naturally they have accessibility issues. So I went to uh Kelkar Vaze College in Mulund. That was, that was okay. It was not inaccessible. There were ramps ah, ramps in most places but what I found the problem was in the socialization aspect. So, I don't think it's because of the institution itself, because of my disease. So, lot of time the students would go and sit in the uh canteen and I would, you know, it would be very difficult for me to um, move from one place to other, because if I sit in the classroom, so, I would attach a table and then make notes. But then someone would have to remove it and then have to go in the canteen. But a canteen would be very crowded, so then again, I won't be able to move around it, so because of that there was some issues. But again uh the staff did all that they could do to help. The ah principal was very very cooperative. He went out, talked to me many many times. On many many fronts he he helped me write for the foreward of my book as well and also made many friends and lifelong friends I must say. So yes, there were a bit diffi…it was a bit more difficult, but again, it’s worth that difficulty.

Trinayani:
That’s what I said, it's a great attitude that you have. That here, though you have a country and colleges and infrastructure that is so inaccessible and for audiences who are listening to us, we must understand that for most of us who are not disabled or maybe do not have any uh physical issues, accessibility makes things easier for us, for, but for our friends with disabilities, wheelchair users and other disabilities, accessibility makes things possible. So, the only way it was possible for Dhruv to be in a canteen with hundreds of students is where, if everybody realized that he is on a wheelchair, he requires that kind of a space, we require a ramp for him to maybe get out of his ah ah ah school and get a classroom and get onto the ah I mean whichever area that it's there in college is so the accessibility is something that really aids to even participation and socialization. But now that you've come to the question about the foreward for your book, Aastha, let’s go straight…Yeah, definitely, can you tell us, we’ve all, we’ve genuinely, ever since we researched and we star…we spoke about you, the both of us have been very interested about your book. So, we understand that you've written a book called ‘Solace’, could you tell us a little about your book?

Dhruv:
So, ‘Solace’ is basically a collection of my articles that I, articles and poems that I wrote on my blog so they show, they trace my uh various experiences in life from childhood, school age, and also, many of them are, most of them are philosophical in nature and the reason why I wrote this book was not really in the sense to make money or ah neither profession or to gain fame or anything. For me, it was important to share my experiences and ideas with others to inspire them and to help them live a more meaningful life. Like even if one person is helped by my writing then it is enough for me. So the idea, for me putting the idea was, was more important, the idea of hope, inspire people to live, to get out of the darkness and the mundaneness of their lives and to do something different. See it a, how can I say it, bright side and that is what my book is about.

Trinayani:
And that is indeed very admirable. Um, could we request you to read a poem out of your book?


Dhruv:
Um, sure sure, no problem. So um, uh this poem is uh called ‘Star’. So, I'll read it now.
A star all bright and white,
Lonely it shines in the sky
In the deepest darkness at the brightest star,
Lonely is its companion
On a journey stretching miles and miles
In vast emptiness on the canvas of the sky,
A reminder of a long journey of a time when we were together
As I’ve journeyed to find you,
Star of my life,
Yet sometimes I wonder if you are the same star,
My only companion on this journey towards you unto me.

Trinayani:
That beautiful Dhruv, thank you so much and how many poems do you have in ‘Solace’?

Dhruv:
Ah, ‘Fight of you’, I must say 10-15 at least 10-15.

Trinayani
And is it available? Is it available for people to buy?

Dhruv:
Ah so I self-published a book because the going to the publishers was uh taking too much time and my health was not that supportive at that time. So, if anyone is interested they can email me and I can courier the book to them.

Trinayani:
Ah, could you tell us your email ID?

Dhruv:
My email is [email protected]

Trinayani:
Thank you so much I think ah um, it only makes sense that people pick it up from you. How much does it cost, tell us that first?

Dhruv:
Ah, it cost 300 Rupees.

Trinayani:
Alright, okay, lovely. So, um it all, so, in your introduction Aastha also said that you are an amateur artist. And I asked her, "What is an amateur artist?” And so she said, “Ask Dhruv only”. So, Dhruv, tell us, when you say amateur artist, what does it mean?

Dhruv:
Ah, well, see I'm not a trained artist. I was a terrible artist in school. So only in lockdown recently when, you know, I had nothing to do for quite some time. So I decided to start drawing, because I love to draw art but I was not good at it. So as I sort of did more and more and more, I sort of but good enough but the…for my drawings to be considered, not decent, something nice. So, when I say amateur artist, I can see that I love to draw and paint. I’ve made many such artworks, they’re included in my book as well. But they are not my main focus of activities like a side side Hob…not hobby, a side thing... Not the main thing. That's why I used the word amateur, that I'm not a professional.

Trinayani:
Okay, so Dhruv um I’ve got it. Ah you are a wheelchair user. Um, uh how do you, which means you are able to use your hands well to write and to draw. I'm asking a question that might be there in the audience’s mind.

Dhruv:
Um, well um, see I can, so I don't write that’s in physically write. I use a mouse or and used a virtual keyboard to type on the computer. And for drawing and artwork I can move my wrist. So, I can draw a bit and then the paper has to be moved or whatever has to be moved, so a little bit I can use my wrist to move the brush, move the pencil and then I take someone's help to move the paper around and slowly, and no mean like the small paper, small size paper to draw and with their help I can with someone help I sort of go about doing it to make adjustments to move around.

Trinayani:
So, in college did you take the help of a writer for your examinations?

Dhruv:
Yes, so I needed a writer like ah somewhere around from 8th standard in school till then I could finish my exams on time. But after that slowly I used to get very tired in the middle. So, I could have finished exams then, but a school counselor such as Rushali Ma’am suggested that see in the 10th standard, the risk is too great. It should not happen that you know all the answers and you couldn't finish so and then, you need to adjust to the writer. So, she suggested to start right from 7th or 8th standard. So, I would write half the exam and then when I would feel tired, I would ask, like I would tell the the…tell her and then she would help me write the remaining part. That's how I got acclimatized and then started using a writer.

Trinayani:
I, I think this is a very very very interesting thing that people who want to use a writer, your counselor was absolutely right, it is so important to get used to having a writer write for you. So doing that from a class 7 or a class 8 makes sense rather than suddenly having a writer, uh uh you know, when you're going for an exam, your board exams because you need to you know the rhythm of of both the person who's um, the writer and the person the the writer's writing for, there has to be some kind of a synergy between the two that's ah, that's a good... That's a very um good advice that you've given. Dhruv, tell me at this point of time you live with your parents and I suppose it is very obvious from all that you've said that do you original poems and you are writing a blog and drawing you are needing to have a caregiver with you to be able to facilitate doing things, and would that also mean, you know, would that also mean daily living stuff whether it is brushing or eating or, you know, bathing, do you require support there?

Dhruv:
Yeah, on all fronts. So, I can do these activities but I cannot lift my hand or anything like that. So, I need someone to, you know, bathe me, do my toiletry and feed me. And then transfer me on the bed and everything. So, all these just my parents were doing it, now they are also getting old slowly, you know, thinking of getting a professional hire, hire a caregiver.

Trinayani:
Yeah, yeah, yeah, so ah, Dhruv how do you see your life panning out now? How old are you? How old are you now? That's the first question I should have asked you.

Dhruv:
I'm 22.

Trinayani:
22, with a book who's…published book. Are you planning to go back to higher studies uh or are you, are you planning to professionally…pursue writing…pursue writing? She had a very interesting question about that. What was that? Yeah, um I have a question that you know we've seen that most of the time that one has to wait for an extensive period of time to kind of get their books published which we kind of and um, you kind of answered by saying that you self-published it but you really need to wait it out to see yourself and your book becoming successful. You need to wait it out. You need to have a lot of patience. You need to see it through. How do you see all of that panning out for you? Do you want to wait it out? Do you plan on publishing more books? Tell us something that's on your mind.

Dhruv:
Um, so ah, for ah for me, ah what you're saying is absolutely correct and I experienced it firsthand and nearly waited for 4 years to try to get a publisher but at one point I was like, I can either wait and let my health continue to deteriorate or like, at least I could put my ideas out there till the time I can easily end with ah, you know, with whatever tools that I have at my disposal. So yes, you are right, it takes time. So, I’m planning to write more books, perhaps publish it on Kindle or somewhere where the upfront cost is less but I'll just show fingers crossed maybe, some publisher might discover me, one never knows.


Trinayani:
Absolutely. Absolutely. Why not? Yes, life is unpredictable and life is magical Dhruv. So, anything is possible and with the, with the kind of attitude and spirit that you live with, er um anything is possible for you too. So lovely. Ah, anything that you want to share with our audiences, questions that perhaps we may not have asked, something that you would like to tell our audience? You know, I think in a podcast that's that's one thing that they don't, they don't get to see you. So I wish I could describe the fact that you are sitting on ah on your wheelchair. With a um, ah head…is that a headrest? Yeah it is?

Dhruv:
It might look like a headrest, it’s a neck pillow, for support.

Trinayani:
Neck pillow! Sorry, with the neck pillow, um, you've got your headphones on. Why do you…why are you using a neck pillow? Is there a particular reason you're using the neck-pillow?


Dhruv:
Uh, yeah, I need a bit support to hold my head straight. It sort of starts falling on one side up to something.


Trinayani:
Okay, so I think I’m I’m I'm glad I took that up. It’s…I think the audiences should be able to get a mental image of of you, physically on your chair; because then they can relate to all that you're saying. And also appreciate the the work that your parents have put in uh uh you, with you being here. The very fact that you are a self-advocate that you are advocating for yourself and for people who have muscular dystrophy. There's so much effort that goes into it and so much respect for your parents both Mangesh and Rupa, since I know them personally, please give them my regards. Um, anything, any last-minute um advice, sharing, comment, anything that you want to or maybe a poem you can end with reciting another poem also? So, why not?

Dhruv:
Yeah, yeah, well, so I would like to tell only one thing. Ah for me in all of this journey now at this stage, ah, how can I say, uh, it's not about ah, earning money or doing anything else for me. It is more of ah ah because to be honest, this disease allowed me to think about certain things which I would never have ordinarily bothered to think about. And one of them is why do I exist? What is the purpose of life? Like I am born now and I don't know maybe, everyone has to die one day. So, and and this you know, like what’s the purpose? What I'm going to say is that I achieved this now and this much money you get, you know this award, that award…But for what and no, this is the sort of…waste the time on, you can say to find my…to self-find the real purpose and I'm guided and so I'm more into what can…spiritual thinking, so, you know, so I’m…I did so. So, make this…that sort of happened and…you don't mind if I share, right?

Trinayani:
Absolutely not. There are so many people who will relate to this. Please go ahead.

Dhruv:
Yeah, so after, so what I was doing till um, 10th standard was, I…I was sort of on a mission. You can say that and I'm going to prove all those who say that I cannot do this-do that wrong and at one point became such an obsession that I sort of was disconnected from the reality of the disease that I have.

See in the end I can say I’ll do, I can do anything but we cannot deny the limitation that the disease is putting. And I was so much in that flow that anyone said that, you know, ‘maybe you should perhaps should not do it. It might not take…come…you might know your help might not take it’. I like no hell with, I would prove you wrong. So even if would a doctor said that, I say why I want to prove the doctor wrong. So, you know, it become madness. So so what happened was a mom was reading a book, you know, since spiritual topic so there she read about a certain uh of that um head Baba in Magadh. So my mom was very curious, so we went there, you know, but from a 10th standard we thought that, you know, my aunt and all of them said they do sort of family picnic and, you know, she all into these sorts of things. So, she took me there so, you know, the moment I went there the, you know, the feeling of blessed that I got, I can never forget. So as I read more of his works more of his teachings, the more I started thinking. So the first thing I did was I stopped doing things for others. Like they're going to say you can’t do this - you can’t do that regardless of what you do. That's not how the society changes; it will take time, so but, in this person, why should I sacrifice, uh what can I see? My peace of mind. And then slowly, you know, so I stay…changed my stream into…I was planning to do engineering and then I decided to Economics instead. And then eventually, you know, I was writing as a hobby, you know, in this for my 8th standard but then slowly it matured into something greater. Let’s see, I have these many experiences, why not share with others? And you know that is the real source of change, the fighting it out won’t do. That the, what can I say, inspiring people, um showing them the right way is the way of home for being about any change and, you know, in this process of self-discovery you might say I have realized this much that inspiring others is more important than fighting them.

Trinayani:
Thank you so much…

Dhruv:
That is the message I would…

Trinayani:
Yes, definitely, that is quite admirable. We wish you all the very best on this profound spiritual journey of yours. Um I think we’ve come to an end of our podcast. You’ve answered all our questions and more. And more, very nicely. I'm pretty sure our listeners would be very pleased with your fresh perspective and your outlook on life. Um, thank you so much for taking out the time to be a part of this. It was an absolute pleasure hosting you, having you here. Thank you so much.


Dhruv:
Thank you, Thank you so much. Thank you, Thank you all.