Transcript

Hello and Namaskar, I am Aastha Shah, an intern at NGO Trinayani and I have with me today Ms. Ritika Sahni, Founder Trustee of NGO Trinayani.

And we're going to be your hosts for today's podcast.

For our very first podcast, we are glad to have with us Mr. Sayomdeb (Den) Mukherjee who is a senior manager at Enable India, Bangalore and during the course of our conversation we will get to know more about his work.

Den is a person of many talents, he indeed has a lot of feathers in his cap.

He has been an RJ, a TEDx speaker, actor, author, but most importantly, in his own words, a mad storyteller.

Mr. Mukherjee, who is also known as the Stephen Hawking of Kolkata was born with a rare genetic disorder, Dopamine-Responsive Dystonia, a disorder that involves involuntary muscle contractions, tremors, and other uncontrolled movements, as a result of which Den was nonverbal till the age of 25, which, one will have a hard time believing if they meet Den now.

So Den, how are you?

How are you feeling this afternoon?

Den: I'm feeling great. Absolutely great.

Umm, Trinayani as an organization is very close to my heart.

And Ritika ma’am as teacher, who has been my teacher for a long time in my life.

During that time, especially when I could not speak, I was an AAC user, AAC means that Augmentative and Alternative Communication User, during that time Ritika ma'am had been my teacher and yeah I'm feeling really great today to be a part of this podcast actually.

Ritika: I'm delighted ah um Den, to have you as our first guest.

And now that you have jumped right into AAC, over to Aasha for your first question.

Astha: Yes, since you mentioned AAC, could you please tell us what does it mean?

Den: AAC is a method of having an alternative method to augment the communication of people having complex communication needs.

So, there, when I was a non-speaking person I had to use alternative methods like communication modes and thereafter I used ah technology, the technology was used by, the same technology was used by professor Stephen Hawking for communicating.

So that technology was really expensive and I'm really grateful to my family, extended family who actually got me that software and laptop during those days in 90s ah, mid part of 90s, because without that my gathering of knowledge won't have happened.

I keep on talking about knowledge because I did not accomplish my final or formal education actually till that time I was 27.

Because ah after I started to speak, my parents wanted me to go for my class 10 class 12 and grads and therefore I could go for my open education and I could complete my education.

But with that, I would never forget those days where I could not speak but I represented India in various conferences around the world and spoke about Indian situation in AAC (Augmentative and Alternative Communication) because I felt during that time as a non-speaking person that there are so many things that can be easily sorted out if we have a clear bit of communication. So when you don't have something at that point you cherish the value of that.

Ritika: So Den, when you said software or technology that Mr Hawking also used what is what is it called? ah could you share that with us?

Den: It is called Ez keys.

Ez.

Capital E small z keys K E Y S

Easy Keys

So that particular software had an auto scanning system.

Ah, light would move on the ah first on the lines and then if I clicked with my tongue or eye blink on the switch because I had no ah voluntary control over any of the muscles of my body.

The only voluntary control I had primarily was on my tongue and gradually, ah,  it was developing a pre malignant condition.

So my father who had been a doctor identified a situation where he recommended me and my occupational therapist to identify an alternative method other than my tongue.

So during that time, Eye blink switch.

A small bit of infrared would touch my eyes and if I blink it would break the signal and that signal would go to the computer, activate the software.

So the software would scan line wise, tap tap tap tap line wise and then if I click once it would go into the alphabets and I would choose the alphabet from the specific lines and it was a first thing that I got introduced to AI because as I typed words, various words those words…Yes…got memory…memorized by the software and next time that I wrote a sentence those words would come as my options of words to be used.

Ritika: Wow, you're right.

So in fact, that's exactly why in your introduction Aastha said that we wish people could see you now.

From someone who was unable to use their hands to be able to type, to use their hands, to be able to access the computer because I remember seeing you ah with ah ah, no, it was somebody else who had the head pointer, correct?

Or did you have the headpointer, oh you used to use your tongue.

Den: No, I didn't…

Ritika: Yeah, you used to use your tongue and and and I must share this with our ah friends who are listening to this podcast that Den at the moment uses, of course, a wheelchair and runs around, wheels around everywhere in the city of Bangalore where he stays. Um and it's an incredible journey for somebody who has been non-verbal, who's had difficulties, who's had, had to have people ah helping him with the manual chair to someone who now wheels himself with the help of his feet. You know he kind of uses his feet and what speed, with what speed he manages to kind of, whiz past most of us who are walking and are trying to catch up with him. Aastha, what about, what what next question do you have for him?

Aastha: Den, since all of us collectively mentioned the power of communication and you being non-verbal, how about we get our audience to understand what being non-verbal actually means?

Den: Nonverbal means, there are two sides of non verbalism, one is people who are deaf who uses sign language.

Yeah and who uses sign language very frequently and easily for their daily needs.

It's a language that they use.

That is one portion where speech is not used and another part is people who use AAC because they have complex communication needs because with my hands even I cannot use sign language.

And with my deaf colleague I cannot use sign language to interact or exchange my points.

So ah, my hands are deformed and ah with this deformed hand I can not use sign language.

Some people are having quadriplegia, they won't be using their hands for Sign Language. And therefore we have to have that system which would enhance our communication competence.

Aastha: Alright, so since you mentioned AAC and medical treatments, I'd like to ask you back in the 80's and 90's while you were growing up, what kind of support did you get from the medical fraternity?

Den: I have been very fortunate. My father had been a doctor.

He did all the treatments, symptomatic treatments, because there was no permanent treatment which were available during that time.

Because the issue that I have is a rare genetic disorder as you have told and that rare genetic disorder was identified in the world in 1995 and you take five more years to go through the trials and all and then also it was so rare.

It's a, it's a one in a million situation.

That thing that I have which is called DRD, dopamine responsive situa…ah dopa responsive Dystonia.

But DRD is something that masks Cerebral Palsy because primarily I was diagnosed with Cerebral Palsy and even now lots of people with Cerebral Palsy is and when they are tried with Dopamine.

We never know what can, what kind of ah reaction that can show in their metabolism.

Aastha: Right, correct.

Since you also mentioned that, you know, fortunately your father was able to help you to the best of his abilities, I want to ask you about the same.

How important do you think that your family's contribution was towards your rehabilitation to living with your disability?

Den: I am very fortunate to live and, kind of, in a joint family structure in India which is the basic ethos in our childhood days.

Most of our family were never the nuclear family like today's.

We are segmentized and we are nuclearized in our family structure, and this actually is detrimental for any kid.

Not only person with disability, for any kid because automatic socialization does not happen.

So when I was brought up 1980s, 90s, during that time I was brought up in a joint family of Calcutta and in that joint family in that big house that we have even now but the family is not there anymore, it's fragmentized.

And there I was brought up.

Every evening when the full family sat together, had a cup of tea in their hand.

We had various kinds of discussions starting from world politics, starting from history, world geography, kind of astrology, astronomy, mythology, every other thing and those kind of discussions actually helped me to grow and gather knowledge because you need to remember that I was never a part of formal education system till the time that I was 27.

Ritika: You still live with your family?

Den: Ah, that is a story, that is a story because I am, though I am recovering now, but I have reached an optimal portion of recovering and I will not recover anymore because the permanent deformities in my body would stay forever.

I stay in Bangalore with severe disability, with a caregiver and ah that is something which is very challenging in Indian context because migrating to a new city and coming and doing a job in a new city and with, especially with severe disability, with multiple disabilities is really challenging which I took on because I really wanted to come out of my comfort zone.

And I wanted to live my own life and I wanted to earn enough so that I…my future can be secured.

My aspirations can be covered, because when a person with disability is born in a family in anywhere in the world, not only in India, anywhere in the world.

First thing that is taken out of the context is the individual aspiration and there the problem begins, because if you are not having the aspiration then you are not going to grow ever.

Aastha: Do one of your aspirations even include getting married?

Den: Ah, yes, obviously ah, but ah I had a very bad breakup just before the time that I came to Bangalore and yes, who doesn't like to have a family.

I also would like to have a family.

I also would like to have a family to whom I can go back in the evenings when no one is there around me, because my mom is there.

She's aging now.

She is 67.

Practically she would be there.

But she would ultimately outlive me and when she outlives me I would be all by myself…and who doesn't want a family?

Aastha: Right.

It's very valid.

Secondly, you hosted an event for Inclove, which is an online dating app for people with disabilities.

I want to ask you, have you ever had the experience of joining one of these apps?

Have you ever tried your hand at dating apps?

How well has that worked out for you?

Den: I haven't tried out any dating apps and because my, my relationships are organically grown.

I met somebody in person.

We interacted with each other.

We started liking each other.

We asked each other out and that's the organic way of growing a relation that happened with me.

But ah when you have a very bad and harsh breakup, it takes lots of time to recover.

So yes, people keeps on telling me that ah, that I have never been alone this long in my life, I should get into a relation but still I'm preparing and still I am apprehensive of getting into a relation and that's why I don't use certain dating apps that are available for us.

Ritika: Alright.

So let's change this because we don't want you to get sad.

I think that's very important for our ah listeners to understand that there could be somebody who's been nonverbal who now speaks and speaks and we can hear you doing that.

Ah, who represents India even now in various places, who travels extensively.

Um ah says has multiple disabilities, lives with multiple disabilities, lives alone, has the desire to be loved and love.

So people with and without disabilities we are so so…there are so many similarities between us.

But as non-disabled people we are always trying to figure out how different we are.

We are different and we all are different.

Ah, he's so ah, the viewers can't see it but Mr Den is constantly opening…he has his finger up so he wants to say something and we're going to get him to say it? Yes, Den.

Den: So you know ah when ultimate inclusion happens?

So ultimate inclusion as um because my study goes back to history and ah we have seen in history that marriages has brought societies together right?

So eventually when ah not between disability, inter-disability marriages I'm not talking about those.

I'm talking about person without disability getting into a relationship and marrying a person with disabilities.

During that time, our inclusion would be successful because during that time social acceptance, regardless of the gender, would come across and in real.

And this is, in this podcast, this is the first time that I am talking about this particular philosophy that I have.

Ritika: Thank you so much Den, for our first podcast. Ah the reason we, I wanted, personally to have you, there was no two ways in my mind, that we should have Den is because I'm aware of the kind of self-advocate you are.

The kind of person who, you know in inverted commas, ‘normalizes things’, and I wish people could see that.

Ah you travel extensively, Um, Den, because of your work. It'll be very interesting to know if you…the challenges you have or the or any interesting, interesting moments ah feelings that you've had while you travel whether ah whether domestic or international.

Den: Challenges are always going to be there.

For traveling, challenges are always going to be there.

But if we are afraid of war and sit at home…

My gran had been an army officer.

My mamu had been an army officer.

And my mamu had been an Indian Army Commando, Paracommando.

So challenges are always going to be there.

When you are having the challenges, you have two options: You can sit at home and do nothing or you can go out, face that challenge.

So I love the surrounding, I love to travel.

So I don't want to give up that because of the inaccessibilities that we might have in ah in the surrounding areas because in India and in anywhere in the world, the best solution are us, people.

And when we ask for a support to people, that is no…people talk about, according to me, people are, according to me people are talking too much about self-esteem and self…Self things because self brings ego in your mind.

And when you talk about self, you must need to understand that if you are talking about self, you are closing a factor, factor of interaction.

So asking for help, and taking help is not something that your…that diminishes your ah self-esteem.

That doesn't happen.

Your self-esteem is with you and where you want to take it forward, you can take it forward.

So in my traveling I'm really grateful that Enable India, the organization that I work in, has put me into a job profile where…I'm repeating, wait.

Enable India where I work, is a esteemed organization, which has put me up in a job profile where I have to travel.

And regardless of my disability I have to travel.

And this is one of the key components of inclusion by an organization.

They have noted the abilities.

They have noted the strength areas.

They have not changed my job profile.

They have kept the job profile that I can work in, I can perform in.

And therefore I can travel, I can move around, I can go and my seed of traveling were implanted or imparted in me by my parents because during that condition also in my previous, I call it previous life, because I have two lives.

I have lived 2 lives in 1 lifetime.

In my previous life, till 25, my parents took me out.

My parents took me out on trains.

Never…we were from a very middle class family.

My father couldn't afford a flight ticket.

So I always traveled in ah trains, Indian Railways, and that was a wonderful opportunity for me to mix and intermingle with people from various cultural backgrounds.

Ritika: And and and that shows in the kind of person you've become, Den.

Um, Aastha has a very interesting question about Bangalore.

Aastha: Yeah, since you mentioned that you live in Bangalore which is the IT hub of India, but also debatably the traffic hub of India.

I want to ask you, do you like the long commutes from one place to another?

Den: Ah, if I have a long commute, I sleep because I have Insomnia.

Unless I'm traveling to an interesting place I would sleep in the car to utilize my time in a proper way.

So, I have no problem in taking long kind of traffics on because I can sleep during that time.

Ritika: (Laughs)

Um, ah, that's a good one. Yeah, that's a good one. That's a good one.

Aastha: There is a silver lining on the cloud and again my next question would be to you about Bangalore.

What do you try to do in your spare time?

Are there any clubs, any restaurants that you've visited and you'd recommend others to visit…

Ritika: and and pub hopping, what about that?

Aastha: …and pubs as well, that you'd recommend us to visit while we're in bangalore?

Den: I…In Koramangala, that are…there are lots of things.

That…In Durra Nagar there are lots of things and anyone wants to make friends with me, just get in touch in Bangalore, I will take you out.

Anytime, I'll take you out.

Ritika: That's a…that's a…that's a very very, you know, you've answered this question.

The question is do you…?

We can just Google to find out, Den, what…what we need to do in Bangalore.

I want to know what do you do?

Do you go about? Do you dine? Do you go to party?

Den: I always go to pubs, bars, dinners, parties and…on, on weekends.

Ritika: What's your favorite drink?

Deb: I am a Scotch drinker, whisky.

Ritika: Oh all, right? Okay, so I can meet you…the next time I come, you and I will have a drink together, Den.

Den: This habit also was imparted to me, in me through my father because…So inclusion starts from family.

So when my eighteenth birthday came, my father took a glass, took a peg of whisky for him and me and I couldn't drink during that time because I couldn't hold.

I couldn't kind of raise my hands during that time. My hands were like on my chest all that time because they wouldn't be able to see me if I could describe you.

During that time I would need a special sitting arrangement to sit.

I would need everything special and my body would be absolutely stiff in nature.

So during that time my head would not like, won't hold, held up and be, kind of, in a proper position.

My head would be going back and in that condition my father would ah bring uh peg of whisky, blend with water, and he'd pull my hand with a lots of effort to touch that and he cheers the whisky glasses and he would give me the first sip like that.

So that is also something that I inculcate from my father and um I miss him yeah, I miss him really.

So, I love to go around.

I love to go around and I'm a movie buff.

I'm a movie buff and on weekends I survive on OTT platform.

Because I have bought licenses of 5 or 6 OTT platform, whichever OTT platforms are there.

And I love movies and my final aspiration in life is to make a movie before I die so ah I want to make a movie…

Ritika: With you as an actor in it?

Deb: I want to direct that movie because I want to direct that movie because I cherish direction more than acting.

Though people say that I'm a wonderful actor but I know that I'm better directed than an actor.

Ritika: So if you had to direct, would it be um, would you think it would be a um, ah something to do with disability or it will be just a fiction story. What would it be?

Den: I believe in emergence.

If the story emerges to be a disability centric story, it will be a disability centric story. If it is a regular story, it would be a regular story.

I have 3 or 4 concepts in my mind.

And I'm looking for an appointment.

I don't know how would I get that.

I'm looking for an appointment with Aditya Chopra because recently I saw a documentary of Adi ah where he was telling that I'm here to make new movies and help people to make new movies.

So, that documentary I saw, where it motivated me so I'm looking to meet Aditya Chopra so I don't know whether I would be able to do that.

Ritika: Let's hope this podcast can get…can be heard by everybody and Aditya Chopra gets to know about it.

How…you never know.

Life is very beautiful Den, it's mysterious. It's unpredictable. Anything is possible.

Den: Life is beautiful and full of surprises.

Ritika: Yes, anything is possible.

Den: Yes, just that you need to communicate everything.

Ritika: Absolutely, you need to specify what you want.

Den: You need to specify and I believe in one of the thoughts of Professor Dr Abdul Kalam. Dr Kalam, in his autobiography, Wings of Fire, he told that when you dream something, dream it or desire it so passionately, that every night that you go to sleep, the last thought that you have is about the dream that you are…or that aspiration that you are willing to achieve, so that that aspiration goes into the ether becomes more powerful, comes back to you in your awake the next day and therefore Dr Kalam succeeded in this life.

Aastha: Well, that is indeed very inspirational and I'm sure our listeners are going to be very thrilled for hearing these words of wisdom from you.

Is there anything, lastly, that you would like to share with our listeners?

Den: Trinayani has taken me back in time with this podcast.

Back in time means that, those days when I used to do the radio show, those days when I used to work and record the shows and I had recorded 822 shows with new contents every time every day.

Those days are the days that I would remember throughout the life.

And I remember those days even more today, with this podcast

And I really want to thank Trinayani.

And I must say one particular thing that people with disabilities needs to get opportunities.

Once you gives that opportunity, wait for some time.

Because unless you wait for some time and give the person time to perform and facilitate the person to perform, the person cannot perform.

This is not about disability, this is about everybody.

So come out of your mental blockage.

Give enough opportunitie,s give enough space, give enough opportunities, and you will see that without charity people with disabilities will be equal contributors in the developing economy of the world.

Ritika: Thank you so much, Den, on behalf of Aastha and me.

It's been absolute pleasure to have you for the very first podcast that Trinayani has ever done.

I hope you know this is the first time that we're getting into this space of podcast and I am absolutely delighted to have you as our first guest. Thank you so much, Den.

Den: Thank you, thank you. Thank you so much. Thanks Trinayani.