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Guest: VR Ferose, Janessa Gans, Vineet Saraiwala
Sign Language Translator: Nithin
Host/Moderator: Parag Shah
Rohit: Thank you for joining us. Today the theme we want to explore is designing for deeper inclusion, and we would like to start our call today as we always do, with a minute of silence to anchor ourselves in the present moment. So we invite you all to a minute of silence with us.
I'm also very happy and humbled that today we are able to offer the call with a sign language interpretation, and we have Nithin who will be helping us and assisting us through the call for interpretation. Welcome Nithin. And with that, I would like to invite Bhumika, who is a dear friend to start our call today with a song offering.
Welcome Bhumika. (song...)
Thank you Bhumika. Thank you for that beautiful song. And now I would like to invite our moderator for the day, Parag Shah, to take us through the rest of the call. Parag is a dear friend, someone who is ordinarily known as a diamond trader in Surat. But for those who know him a little bit more, would know of his beautiful journey as he frames it from return on equity to return on investment to now return on equanimity. From manufacturing diamonds to discovering the diamond within, and to discovering it in communities, in spaces of love and compassion. Thanks a lot Parag for joining us today, and I welcome you to take us through this call today of designing for deeper inclusion.
Parag Shah: Thank you Rohit. And Hello! Hello everyone! It's a beautiful, rainy morning in India. I welcome you all. And thank you very much for saying yes to the inquiry we are holding today on inclusion. We have some amazing souls to serve us in this inquiry and on behalf of everyone who has joined the call and also the volunteers behind the platform, I welcome our three guest speakers on the call today. Thank you Ferose, thank you Janessa, and thank you Vineet for saying yes to love. Grateful for all the work you do, and what you are doing while serving the larger cause of inclusion. A very sincere welcome from the bottom of my heart, and it is an honor to be with you on the call. Thank you.
Thank you Bhumika for the beautiful prayer too...loka samasta sukhino bhavantu, which translates into "May all beings be happy" and in some ways that is the question that has brought all of us together. How do we design for the inclusive work? On a separate note, today is also International Yoga Day. Yoga stands for converging and dissolution of boundaries. Inclusion is also about dissolution of boundaries. So it feels great to have such conversations on International Yoga Day.
Just to set the context, I think the question is - "What is inclusion?" This is what we see in our houses, in our neighbourhood, in our cities, societies -- there are so many people on the disability spectrum with different degrees and different types of physical, intellectual, mental disabilities, or a combination of all of this.
And they have to pass through a lot of hardships and go through deep suffering because in general, the people without disabilities are insensitive towards them; may not be intentionally, but still that insensitivity lingers, and are not mindful of their presence. So inclusiveness per-say is a very extensive topic and has many implications on us as individuals, as societies and as humanity at-large.
I have a small slide-presentation just to share some facts about inclusion. Just give me a moment as I switch on the presentation mode.
[Presentation starts]
Setting some facts, over 1 billion people globally experience disability and that is one in seven people have disability of some kind. This data is from the World Health Organisation (WHO). People with disabilities are the world's largest minority and 80% of the world's people-with-disabilities live in developing countries and that in itself is another larger pool of those in pain, because the country is not geared up for (handling the people-with-disability). Women with disabilities are particularly more disadvantaged. So if you are living in a rural area, say in India, and if you are poor and you are a woman, and if you are disabled, the pain and the suffering multiplies, because of that.
Some more hardcore data:
- 60 million people have some form of disability,
- only 2% of people-with-disability are educated and
- only 1% are employed.
There are so many developed countries who may have bridged this gap (the picture on the left-side of the screen). They may have built all (required) physical infrastructure for people-with-disability. But the emotional distancing that they face still, as a society is more painful. I have a son and I have yet to see that he has one good friend, just because he's on the spectrum (autism spectrum disorder). So emotional distancing again, is a huge issue, irrespective of the infrastructure.
Let’s see -- just talking about blindness, India has 1.2 crore (12 million) people who suffer from blindness, the largest in the world. As we said, there are different types of disabilities, intellectual disabilities, dementia. You know, from about 50 million (those with intellectual disability) in 2015, the world is looking at a figure of 152 million by 2050 -- which is 3 times, in the next 35 years. That's how fast it is rising, set to triple by 2050.
Caste discrimination is another such social issue. The stories about that, particularly in India, in every possible media, you read -- Mumbai's 30,000 unsung heroes are languishing while doing a very inhumane job. Though, this looks very gross and most people would understand this, but in a subtle way, how this emotion of disconnection and creating boundaries has creeped into our life. There was an advertisement by a Kent dough-maker saying 'Be mindful of maid’s hands' because she could be a COVID patient (carrier). So subtly without us realising, it has creeped into our household. The topic of creating boundaries is worth noting here.
You know, the George Floyd story. I mean, the whole world is talking about that. You know, ‘Black Lives Matter’ and this is a very recent event, but in a subtle way, you know how this has creeped into our life? If you are Black, you know, the data on the right side of the screen, that's how often your taxis are canceled. So if you're Black, you have double the chance of the taxi driver canceling the taxi, than if you are White, and that is true two or three times with Uber and also with Lyft. So in a subtle way, maybe the George Floyd topic has just brought it to the surface, but the underlying, latent, emotional and physical differencing and distancing is so deep rooted, and we can see that with this data.
Gender inequality, I don't need to talk much about that being a male. I have played my part, to be honest, and you know, people are talking about this pandemic, but domestic violence is the next pandemic, in India -- there are people talking about that. And so much of this is something we have all seen in our families, and lives, all around us -- about gender inequality.
So, fundamentally it brings us to this question. How do we design for deeper inclusion?
Typically, typically the pleas for inclusion, you know, people are sensitive to these issues and pleas for inclusion are either calls for sympathy or calls for efficiency, or a call for boosting market-oriented goals, and which has helped us to cover some distance. But a lot needs to be covered and probably that may not be the route. So here, we would like to hold space for deeper inquiry that is pertinent not just in the context of temporarily-abled bodies and differently-abled bodies, but in the much larger context of ‘us versus them’ that is currently playing itself out in dramatic ways, and in so many subtle and gross ways around the globe.
So the question we want to explore today is how do we design for deeper inclusion? What is the architecture of inclusion? I would call upon a dear friend, and someone who I looked upon as a parent, you know, we both are parents of a child who is on the spectrum. And someone I looked up to, to share his perspective, and it would take us just a moment to introduce him -- V.R. Ferose.
I think the journey for Ferose is from I am Ferose to V R Ferose, I'd say. V. R. Ferose, the youngest MD at multinational company SAP, whose son on the autism spectrum taught him that ‘everybody is good at something’ and inspiring him to do so much remarkable work in the field globally. He is the founder and the promoter, the visionary behind the India Inclusion Summit, which is held every year in Bangalore, and is creating so much good work in the community. Ferose, we welcome you.
V. R. Ferose: Thank you. Thank you Parag bhai, for that wonderful introduction and really setting the stage, especially with all the background that you shared. But before I start, I just want to make sure I am audible clearly? And Nithin, is my pace okay? I just want to make sure -- Nithin, pace is okay? If I go too fast, just give me a signal and I'll try to slow down.
So firstly, you know, it's an absolute pleasure to be invited to Awakin Calls. I am a huge fan of all of the work that ServiceSpace has been doing. In fact, I have learned and we all at the Inclusion movement have taken a leaf out of all the lessons from ServiceSpace and are trying to use it in our ‘Inclusion journey’.
So I am grateful to Parag bhai for giving me the chance to share some insights. Now, let me first talk about the topic of inclusion a little bit from my personal journey, and then I'll talk a little bit about how, you know, at least from the last 10 years of having worked in the space of disability, what are my key insights. Really from driving system level changes. I think it's important that, you know, I am able to share some of those learnings.
So, like Parag bhai introduced in the beginning, inclusion is a very broad topic, and I don't claim to be an expert. I happened to get involved purely by chance because my son was diagnosed with autism way back in 2010. Thud, My introduction to the world of disability happened purely because of my son's condition. And, probably if that had not happened, I wouldn't have known as much as I do today. So I have to first say that my introduction to the topic of disability has been because of a personal journey.
The second thing is, Parag bhai asked this question, "how do you define inclusion?" And it's a, as I said, it's a complex topic. It's not easy to define it because everybody has their own version, but my personal definition is -- how do you create a world where nobody is left behind? That for me is the simplistic definition of inclusion. And so nobody's left behind includes not just persons with disabilities, persons with color, persons with gender. How do we create a world where everybody is included in the journey of society? So that for me is the definition, the broad definition of inclusion.
What I would like to do right now is give you a little insight into my journey, but I'll try to kind of quickly run through that, because you can't go through your 10 years of journey in 10 minutes, but I'll try to kind of give you a few highlights. And then I like to conclude with a few insights.
So as I said before, in 2010, while I was the managing director of SAP labs, my son Vivaan, he was at that time 15 months old, he had certain indications of behavior, which seemed very different for his age and so we went to various doctors. And over the course of two to three months, we got a diagnosis that he's on the autism spectrum. Like every parent, you know, we went through our phases of grief. He was our only son and obviously we didn't know what it does (the condition). I went through a personal journey starting from a deep sense of depression, to anger, and finally acceptance.
But what it did was it allowed me to deeply introspect and understand the space of disability. Obviously your first response is how do we take care of our son? So, and like every parent, my first thing was, is there a cure for it? What are the therapies that we can do? And the more you try to understand the space, the more deeply you understand how broken the entire system is. I spoke to a lot of parents, doctors, therapists. I was incredibly fortunate that I had access to thought leaders around the world and one thing led to the other. Once I started understanding how complex the system is, it also then harnessed my desire to do something beyond just taking care of Vivaan, but is there a way to fundamentally make changes in the existing system?
And I'm purely talking from an India perspective now, even though I'm based in the US, a lot of my work in the space of disability is still rooted in India. And the one big insight that I had was going back to the number that Parag bhai just shared -- that only 1% of the people with disabilities have any meaningful employment.
And I'm using the word meaningful, not doing charitable work, but maximizing your potential as an individual. And that number is just 1%. Obviously because of lack of employment, almost all the people with disabilities are heavily dependent on a family member. The big question that almost all parents have, the real nightmare is what happens to the kid after the parents are gone?
I think that's one topic that I found every parent in the world goes to sleep at night with, especially if you have a child with disabilities. And for me, what I looked at is can I make a difference to that 1% number? Is there a way to change the narrative around people with disabilities, because it's not that they're not competent or they are not capable! I think it's a systemic issue because of which a lot of people remain unemployed.
And so I started a program, where we hired the first three people on the autism spectrum at SAP labs. You can imagine there was a lot of pushback for it, because these three employees didn't have college degrees. But they knew how to browse the internet. We were able to train them. And finally, over a period of almost more than a year, we were able to prove that the people who we hired on the autism spectrum were as good, or even better than our engineers. And I think that was a real tipping point, because you had data and evidence to show that people who are on the autism spectrum can be meaningfully-employed. And what followed was, I would say a series of coincidences. I spoke at the World Economic Forum about an idea that can change the world. Our CEOs were extremely impressed with this initiative and they took a massive leap of faith and made an announcement that SAP will hire 1% of its global workforce from people on the autism spectrum. I think this was one of the most landmark announcements ever made for people with disabilities by a corporate. And just to put out some numbers, we were 65,000 people and the commitment was to hire 650 people on the autism spectrum by the year 2020. So our commitment holds till the end of this year.
What followed was that many companies around the world have made commitments to hire people on the autism spectrum. At least more than hundred of them have already done that in some form or the other. We spoke at the United Nations, and in 2016, it became a Harvard case study. So that's basically the journey -- from Vivaan's diagnosis to making large corporations hire people on the autism spectrum.
But what I would like to share is that this is not just limited to autism. I think it's just a case that if you provide the right opportunities, everybody's good at something. And we can find meaningful jobs for everybody. It's not just autism, it's not just disabled, but I think everybody deserves a chance if you provide them with the right opportunity. So that's basically my personal journey.
At the same time, we also started the inclusion movement way back in 2012. Like Paragbhai said, I started, we started an inclusion summit, but there are a lot of other activities we do around it. You know, this year it will be fully virtual in the month of November. But our core, the reason for starting the summit was basically trying to say, how do we change mindsets? My personal realization was, people were talking about providing employment and providing education, which were possibly important, but a lot easier than changing mindsets.
And the reason is pretty simple. If you're talking about employment, you can put a number to it. Like I said, I could measure -- How many people got jobs at SAP? You could measure how many people are employed or unemployed in the country, but it's very hard to measure the mindset of people. If you're able to shift the mindset of people to the compassion zone, then you would be able to drive changes, systemic changes, long-term changes, not just providing jobs or education, but really providing long-term changes. And for our mission, how do you drive systems-level changes for inclusion?
So a few things that I want to share here is that firstly, I don't see disability as a category, I see this as a spectrum. Everybody at some point in their life will fall on that spectrum. If nothing else, it would be because of old age. If you don't, maybe somebody in your family would. So I think, everybody will eventually fall into the spectrum. And so it becomes a moral obligation for all of us to understand the topic of inclusion and design for inclusion.
Maybe the last couple of points that I would like to share, especially about designing for inclusion.
Now, the big question is how do you design for inclusion? There's this beautiful quote that, "Never judge a person unless you have walked a mile in the other person's shoes." So it's very important that for people to understand the topic of disability, we have to help them, you know, make them walk in the other person's shoes. So a lot of design principles that we use at the summit, is around the fact that we have a majority of people who are disabled, which means the minority, or the so-called non-disabled suddenly start to understand what it means to be a person with a disability! So that's a core design principle that we use -- maybe say we flip the majority to the minority, and the other way out. And that's been a design principle that we've done across all the pillars of work that we do.
For example, when we do a walk-a-thon, we say you have to walk with a person with a disability. Because as soon as you walk with the person with disability, you are able to literally walk in the other person's shoes and that creates a shift in mindset.
And the last thing that I want to share is that the topic of disability has to be seen holistically. I think a lot of people are doing amazing work, but they are all looking at just one particular sector. I was also guilty of doing the same thing. So when I started, I said, okay, let me solve the problem of employment and then you realize when you fix employment, and you haven't fixed education, that creates a different set of problems.
We live in a massively interconnected world. And so the only way we will build for a world where nobody is left behind is when we see the world holistically. We have to recognize that we live in a massively interconnected world, and so we have to have a systems mindset to solving all the problems.
I've written extensively about what I call as the Inclusion continuum. I see inclusion as seven different pillars, starting from awareness to advocacy, to early intervention, to employment. Then it is about lifestyle and then what I call assisted living. The whole idea is how do we look at the life and the journey of a person with disabilities? From what I call a cradle to grave approach. Once you think in terms of systems, I think you are able to build a world which is truly inclusive, where nobody's left behind.
Thank you very much. I'm sorry. I don't know whether, if I took more time than I should, but, back to you, Parag Bhai.
Parag Shah: Thank you. No, no, we are good on time. Thank you. Thank you for setting up perspectives. I think ‘nobody is left behind’ is only possible... Just listening to you... I feel that once you understand a holistic approach to ‘everybody is good at something’ and if you are able to light and shine the gift, even what a disabled person can offer to the world, I think we can make a truly inclusive space. Thank you.
People who wish to send some questions, please post on the livestream page comment box, and now I will call upon Janessa. But before that, a moment of introduction for her, Janessa is a mother of three children, very amazing three children, and a sister of elder brother, David, where she finds pure love and joy in David's eyes, who is on the spectrum. She's also the founder of Euphrates, a peacebuilding organization across 15 countries. She is a (former) CIA agent but now loves to volunteer. Welcome Janessa! Thank you for being with us.
Janessa: Thank you, Parag. Thank you all for having this amazing conversation about inclusion and for inviting me to be part of it.
This is my first time doing a call with the India branch of the Awakin Talks, and I am a Service Space volunteer! But, more importantly, it's the first opportunity that I've been given to share reflections because of my brother. And that, my brother David, and that means so much to me, because I'm truly -- he's the person who has had the biggest impact on my life.
And, I am not an expert in systems or disabilities or know how to design for that. But, I can share my personal journey that really was started because of David. David is nonverbal. He has mental disabilities. He is severely autistic. And, growing up with someone like that, you really see, you know, he was consistent. He was always himself. He didn't have a sense of self-consciousness or awareness. He was just purely himself and just this pure being and, what was interesting though, was how wildly-different people reacted to him.
So he was consistent, but what he did, we often would say, it's like he brought out the best of people or the worst of people, and I wondered if those tendencies were already there, and being around someone like David just magnified them. Or what was that dynamic? But, the whole range of the spectrum that people would react to someone who is different, who is an "other" to them. I saw a ton of fear. I saw a ton of judgment. I saw a ton of exclusion. I even saw violence, even from some family members. I saw impatience and then, on the other side, I saw incredible humility and tenderness and kindness and understanding and openness to someone who was different.
Truly! These opportunities that we have with the differently-abled, it's not about them. It's about us. How do we react and who do we become when there is an "other" in front of us? And so growing up with someone like that, I think, made me more sensitive or more attuned to how we "other" people and how people react to that because, where others saw him as the "other," I just saw him as my brother.
And that has become this motto for me. How do we see past the exterior, see past the differences and the things that might make us afraid? "Oh, they're different. Therefore I have fear or judgment or want to shut them out." How can we see past that exterior and see the person's humanity and see the person's deep worthiness and equality? And so, for me, that's become, "How do I see the 'other' as a brother?" And that's become this mantra for me.
So, growing up with that foundation and then imagine finding yourself in a war zone, which I feel like war is really aggravated "othering." As a CIA officer in Iraq for almost two years, and being in a position that -- my job, as a counterinsurgency analyst was to understand the enemy, the "other," and pick apart who they were, and then, "How do we defeat the 'other?'" And I love this quote, thinking about wars and, and othering, Ryszard Kapuscinski was a Polish journalist, and he wrote a book called The Other, and he wrote, "I think everyone loses wars because it is a defeat for the human being. It exposes his inability to come to terms, to empathize with the other, to be kind and reasonable because, in this case, the encounter with the other always ends tragically in a drama of blood and death."
So I just love how that sets up the extremity of war, that this group of people is so different, is so beyond the pale that we have to destroy them. And I think I was always struggling, as someone who, in that role, and I'll just tell you. My job was to do these certain things. And I had lots of very intimate encounters with the enemy, and my head knew all the horrible things that this person had done; and the Iraqis and what they were doing to Americans. And so my head could see the enemy, the other, and yet my heart was always looking for connection and seeing that sense of humanity and seeing past that exterior. So it was this constant battle internally between the head -- I think our heads always look for difference and look for separation. The mind wants to separate and the heart wants to connect.
So I think this came to a head when, after a really, really dark period for me, where I was the closest to the front lines in Fallujah in Iraq and there was a major battle going on and seeing our Marines coming back from the front lines wounded, and just feeling such a sense of despair and darkness and, "What were we doing to each other? Where was the end? Was there going to be light at the end of this tunnel of death and destruction?" And, "What was my part in it? Who am I in this space?" And this feeling of just real darkness and heaviness.
A few weeks after that, I was in another army base alongside the Euphrates River, and I'm still decompressing from what I had experienced in the war zones. And I'd gone for a run and gotten fresh air and went up on the roof of this building. And I looked out on the Euphrates River. And, oh, the feeling of stillness compared to bombs going off and incredible noise and the sound of stillness and beauty that was the scene before me. And that peace and that quiet and life! It's desert everywhere in this Al Anbar Province, but there's this beautiful life-giving river and a little bit of green patches on either side. And I realized that that same Euphrates River had actually been flowing just a few miles downstream in the middle of that war zone, in the middle of that destruction and devastation. And the thought that came to me was, "Which will you choose? Which will you choose to focus on? Life and peace and hope, or death and destruction and darkness? And, in that moment, my heart won out over my head. My head did not win. And I said, "I choose the river," knowing that that was the more powerful force. That was the way forward. That was the future.
And, in that moment, that changed my life. And I went back to my boss and said, I don't want to be doing counter-insurgency anymore. I want to do something to build Iraq, to help Iraqis, to make some sense of progress. I knew I didn't want that feeling anymore of helplessness and fruitlessness that I'd had in the war zone. So I did. I made that change and then that turned into helping.
My transformation in Iraq was seeing Iraqis all of a sudden as brothers. And at the end of my time there, one of the Iraqis said, "Janessa, we feel you are Iraqi." It had come full circle to me, that sense of kinship and that sense of oneness and that sense of brotherhood, even with someone who is different, even with someone who's fighting against you, even with someone where the othering is so extreme that there's a conflict.
So now we do that around the world in helping communities reconcile those differences in those conflicts. And there are some beautiful things that our community is doing, like bringing albinos and non-albinos together in parts of Africa, where the albino community is so discriminated against. Really, really persecuted. And they're setting up spaces where you can hear each other's story and begin to humanize the other side. And so much of that is just that sense of creating the opportunity for humanization and getting past our fears.
So for me, I'll just say that that was a choice at that moment, and yet I think that the seeds were planted because of my brother. And I've seen the real sacredness of him and almost that, it was a missed opportunity for people who couldn't see past that. What beautiful societies that we would have. Like Ferose, I love what you're doing to design for that greater inclusion because I think that doesn't so much benefit the differently-abled. I think that's what we need. You know, those who "are not on the spectrum," but it's to save our soul. We're the ones that need healing. Like my brother, like he's consistent. It's we who need to change. And we who need to have that pure vision of seeing our others as a brother. So that's what I'll share. Thank you.
Parag: Beautiful, Janessa. Oh, wow, I am just deeply struck, now, as I listen, it is not about them, and it is about us, and it reminds me of my son. I have two sons, Janessa, and the younger one is on the spectrum and the other one is an athlete, very athletic. But I knew, in hindsight I realized that the younger one made me a father, not the elder one. You know, the son who is on the spectrum actually taught me what it means to be a human. And yes, you know you can choose -- you want to bring the best, or you want to bring the worst.
And wow, you are lucky, what a compliment! That is quite something. Beautiful! Thank you, Thank you!
And now I will call upon Vineet. Vineet, who has a very rare visual impairment disease, but that could not stop him from soaring to unprecedented heights, academically. He is one of the very few who graduated, who got his Master’s Degree from I.I.M. Bangalore, one of the premiere business schools in India. And he has spent so much time cycling around in the Himalayas, and running marathons. I think the beauty is that he found his purpose in using his gifts to serve others.
So Vineet is not just one of those rare stories of transcending the disability to be successful, but even a rarer story, I would say even a rarer story of accepting one’s limitations and then using his invisible gifts to serve everyone with joy on his journey. And he is also a volunteer, we volunteer together. Thank you, Vineet, for what you are. It is a great joy and honour to host you.
Vineet: Thank you..thank you for this. So Pranaam, everyone. I am just sharing the screen...first slide.
So, here is a group of girls -- we call them “Fantastic Five”. These girls were left in hospitals, left in police stations. A lot of parents abandoned them because of their disability. And there was this orphanage in Chennai called Sri Arunodayam, and they have adopted these five girls. And that is where they were staying. So that is itself a reality, whether it is in a rural setting or urban -- I think a lot of people don’t want children with disabilities. And when the Coronavirus pandemic struck, they were worried about how they could be of service in these times? And they had done a vocational course in tailoring, and they started making masks. So they make 300 cotton masks, daily, and distribute them for free. When we spoke to the founder of Arunodayam, and we asked “Why are you distributing these masks for free?” He said, “The society has given us so, so, much, and this is our labour of love.”
Probably these girls would never understand the pandemic, but they are so happy while doing this task. So when the disaster strikes? You know? These girls? They did not run away. They started serving people within their communities in their own way. So I think; “Hat’s off” to this group of “Fantastic Five” girls from Chennai.
Yesterday, I was reading in the news, the Supreme Court actually gave permission to a parent to abort a disabled kid, who had Down’s Syndrome, they were twins. So, whether we like it or not, I think society does not want us -- or, is it opposite? We don’t know as such…
Coming to me -- so I have Retinitis Pigmentosa which is a degenerative condition, in which your eyes, your vision keeps deteriorating as your age starts progressing. So currently I have nearly 10% of my vision remaining. As such, I have gone to Vipassana, and Vipassana talks about impermanence. I think there is no better example for this than with Retinitis Pigmentosa, where every second, your cells keep on dying, and I think that is a beautiful example, which makes me, reminds me of impermanence in my day to day life.
For me, if you look, there was a doctor who actually damaged my left eye, and my left eye had become very small, compared to the right. You know, we always look for perfection:“Why are my hands not perfect? Why are my eyes not perfect?” And this was so visible, and anyone could actually realize this. So, what I did, instead of accepting that condition, I started being in homes. I started avoiding public gatherings, because I did not want my left eye to be visible to the public as such. I started wearing tinted glasses.
And I had a lot of hatred for the doctor which did this to me and my condition. But, after so many years, I no longer can hide this, as such. But currently I don’t have any hatred towards the doctor, because gradually, that acceptance is there and I can’t keep that hatred being within me for that doctor. So if someone asks me now: “Have you forgotten that doctor?” -- actually, I have forgiven him...and I wish him all the best. And, as a matter of acceptance, here is a photo of the left eye, and the right eye…(laughs) So!
Now coming to the acceptance and viewing this suffering which I had…. A lot of people would think that it is a curse. This journey of acceptance does not come easy. I was actually wondering what is the English word for “मोह”? I could not come up with a better word than attachment.
As you know as any parent gets attached to their disabled kid -- they are very over-protective of them. My parents were also initially very over-protective. Always with care-givers, maybe trying to keep us in that safety net. They had done all religious offerings, they had gone to almost all the temples...done all chantings, all Tantric, and numerology, and palmistry, and visiting all doctors in Ayurveda, Allopathy, and trying to alter the status quo as if something was wrong with the current situation of things. You know sometimes we try to not accept the thing. We try to change the status quo. And that is what my parents were trying. I think this is an example, when you start loving your kid, rather than getting attached, I think that is the way to go, and maybe what happens, when there is a shift from attachment to acceptance. And a shift from suffering, to viewing that suffering as a gift.
So, this is the photo of me and my brother. We both graduated from I.I.M. Bangalore, together in the same year. My brother is also visually impaired like me. He also has the same eye condition. By the grace of three beautiful teachers, who taught us on how to handle our disability, we wrote the common entrance exam. And, we finally graduated in the same year. And here are my father and mother in the picture as such.
But, I wanted to tell you one thing about Anuj… So he’s an investment banker. There was this meeting, all these big shot investors were there. For Anuj, his laptop's screen reader suddenly went off. So we actually use a screen reader where all the text is converted into speech. And if you know, investment banking as a profession deals with a lot of numbers and suddenly the screen goes off, and Anuj goes on reading out all the numbers and memorizing it and telling it, and after fifteen minutes, these investors realize that: “Oh, this person is actually telling all the numbers, which we are reading on our spreadsheet and printed paper, just by sheer memory!” I think that at that point, the investors got quizzed by the super- human feat of Anuj. I know, for me also, that was quite wonderful to see.
And here is a group of shoppers, with disabilities, who have started venturing outside their comfort zone, in retail spaces. So, what I primarily do is, I make shopping accessible, and over one lakh fifty thousand shoppers, with disabilities, have shopped with shopping assistance and accessible trial rooms. And my favourite is, “quiet hour” for people with autism, where the light, sound and trolley movement are minimized.
So, a lot of people asked us: “How did we bring so much joy across India for people with disabilities?” The answer is not me sitting in the corporate office, as such the answer was, someone at a team member level, the so-called lower strata of our society, because we think that they don't understand inclusion, but I believe that they understand inclusion at a much more deeper level than anyone of us, because they interact with so many people, on a day to day basis .
We ourselves might interact with a person from our caste or a person from a religion, while a security guard interacts with people of all religion, men, women, children, all alike. So that's the beauty of the ‘lower strata’ and people who are in lockdown serving us. You would have seen their compassion levels. And when we think of this lock down, which has made us so bogged down, this lock down for two months, imagine people with disabilities who are being locked down for years.
And when we were doing “quiet hour” we told our team not to interact with shoppers with autism and interact with their caregivers. So, one of the parents had come with her daughter, to “quiet hour” to shop, and teach them shopping skills. And suddenly the girl had a meltdown and our training manual clearly told us not to touch a person with autism. Suddenly a team member came, nudged the girl, gave her a glass of water, made her sit down and the meltdown completely vanished. And the children and the mother had started crying, were in tears, saying that this is the first time, her daughter was respected as an equal.
So now coming to Ladakh, this is actually my favourite place and, when we are in these high places -- so Ladakh is situated at a place of eleven thousand feet and, I was cycling in a journey from Manali to Khardungla. So, I've cycled over five thousand kilometres and ran over six half marathons. Though, I still will not be qualified, like Janessa, to be a CIA officer and lockdown has actually made me extremely fat, because of my mother's food. So, here is me at the Tanglang la pass, the left photo shows me in a tandem cycle, which I was riding.
And here is Lieutenant General and head of South Eastern Command, Surendra Nath, and I was actually crying for Maggie at the top, and I was feeling giddy. And he did not allow me to have Maggie and I started crying at that point. There is this, another photo of me at the Khardungla top. When most of our group actually gave up, the Lieutenant General said that we are commandos and we never give up. And we will also not walk. And to people at these high places, you would realize that walking is certainly an easier option than cycling. And we actually managed to conquer Khardungla by cycling.
So here is the Lieutenant General who did not think that -- oh here is this pitiful boy with disability, should I stop my cycle, should I make any concessions for him? But he actually told me and taught me more about equality, than I could learn from anyone as such -- because he did not show any sympathy and he taught me in terms of being truly equal.
And the last photo in this actually is of the Ladakh marathon which I had participated in last year and you know these high places have some kind of awakening within us. When I was running during the Ladakh marathon, I had this realisation that I think that the only common factor between all of us present on this call and universally is that we are breathing every moment. This life is actually a gift, to all of us. And the rest are completely extras. So don’t you think if we start viewing a shift from attachment to acceptance, from suffering to looking at it as gifts, I think we are there in the inclusion space. Thank you.
Parag Shah: Thank you Vineet. Man, that was so inspiring. I am just lost for words, even thinking on how to sum up your presentation. What one thing really hits me hard is that if a person on the spectrum can create a shopping experience for 150,000 shoppers at Big Bazaar, just think what are the choices and how much work can we as an individual do -- this is a question to hold for everyone. And to reduce you to your ‘eye’ is probably a gross reduction of humanity at large. And to see the giant Vineet behind that, I think I am called to look at the giant Vineet with all your gifts and the way you look at things. Thank you. Thank you very much.
I would invite questions again on your chatbox. To start with the question-answer, I think a very pertinent question which comes to me is by Bhumika Patel and the question is to Janessa and anybody can share.
“When we talk about inclusion in general, in my experience, and I could be wrong here, we talk about people with physical disability or intellectual disability. What about people with mental health conditions? The sign of mental health conditions mostly are so subtle and reasonably invisible that it is never looked upon. Either they are ignored or either they are mocked upon. What is the shift required to hold people on the mental disability spectrum.” That is the question. Please answer, Janessa?
Janessa: You want me to answer that question?
Parag: Yes.
Janessa: So mental health is what you said, right? So from a system’s design, I wouldn’t know how to answer that, but just from speaking honestly -- aren’t we all on that spectrum? I mean I just, it’s that we are on the spectrum, in one way or another. But, I know speaking from the US, the mental health has become an epidemic, has truly become an epidemic, especially eliciting our young people; and whether it is social media or there is all these reasons that people are trying to figure out, why is suicide the highest in terms of depression and all these things. So if we are pushing that issue, the people who are suffering from that, if we are pushing that in the corner, that is excluding that category of people that’s our future, that’s our young people. That is you know it is such a huge and widespread problem.
And I think we are just beginning to look at it. You know, it's like when we don't want to look at the darkness. Yet when it becomes so widely afflictive, we are forced to. And then there is COVID to top that! There are so many studies that show it is exacerbating it. What was already a huge problem, has now become bigger, because people are physically isolated from each other, only connecting through screens, and through social media, and they're depressed to begin with.
And so it is another epidemic in the pandemic . I wouldn't know how to address it. I just think, let's bring it into the open. Let's not exclude any group of people suffering from something, anyone who is different, who is struggling. And how do we do that?
I love what you said about no one left behind. No one is excluded. And that ‘othering’, you know, especially with the young (as my kids are growing up)... I have experienced that painful othering myself with my brother. Certain people didn't want to hang out with me because I had a weird brother and it's just so, so painful.
So let's not. Let's not make it so painful. Let's accept it. And then to Vineet's point about the acceptance, I thought that was so powerful to me, accepting that there is a problem and accepting that it is okay and then having that conversation of how can we change, and not change them. How do we all change for the others, you know, for folks suffering to be included?
VR Ferose: To add to what Janessa said, I think more people will come out of covid-19 with mental health issues, than with anything else. It will become a huge challenge, and the way I see it, first will be the diagnosis. I think a lot of people just don't know that they have a mental health issue. You know, people who undergo depression are not even aware that they are going through depression. So the first stage is to have a diagnosis, and not to make it a taboo. People think that if they have depression, they shouldn't talk about it to anybody!
We have to get to a point where we have to say, it's okay, that you are going through depression. No problem with that. Ask for help. I mean, it's like this, if you have a headache, you have no problem taking a medicine. But if you have depression, you have a problem asking for support. As I said, there are two problems. The first thing is to realize that you have a problem. And the second is once you have a problem, seek help. There's nothing wrong with it. And we have to get to a point where we normalize it.
Let me explain from a systems point of view, Categorization of disability is extremely important because systems are designed around categories, funds are designed around categories. And let me give you two different laws, which will explain the difference and the impact of how laws are formulated.
If you look at the American disability law, it just says that anything that hampers your day to day functioning falls under the category of disability. And that's a very broad definition of disability. Whereas in India, the disability law is framed very differently. It says, if you are blind, if you are deaf, if you are blah, blah, blah, then you are disabled. And that's a problem because it's a very limiting set of disabilities. We have lived with seven disabilities for almost 20 years and it took almost a decade to extend the disability to other, newer disabilities like autism and other intellectual disabilities. In disabilities, we include 21 different disabilities. As soon as you specify a disability… (unclear audio)... which again means requiring funding for it. But one definition says that anything that hampers your functioning in the society is a disability and the other leaves it out. And I think that's a classic example of a design flaw. Hence, we have to think from a holistic point of view about that question.
Parag: Thank you, Ferose and Janessa. I have a personal question, and I would address it to both of you and Vineet. Vineet as the person himself, Feroze as a parent and Janessa as a sibling of a person on the spectrum. I am also a father and I think the most difficult question for a parent, maybe even for a sister, is about how do you balance between safety and care, and giving them importance to lead their life in their own way? There's a very difficult balance to walk.
Vineet, would you like to throw some light on that as a person? How do you feel when people are too protective or less caring? Where do you draw that line?
Vineet: I think that's a very interesting question. So I think what you actually meant is how we can differentiate when love becomes attachment? A lot of times, children with disabilities are kept at home just because of that love. Like, for example, at one point, my brother was not allowed to go outside because of over-protectiveness of the parents. It was not that the parents did not love my brother or me, but out of genuine concern that what happens if, let's say we met with an accident.
I'll just tell you of a beautiful switch. I took part in an ultra cycling race, it's a 540 (km) race, with my tandem cycle. It's a nonstop cycling race. And at 1:00 AM in the night, I called my father and told him that I have cycled over 270 kilometers. And you know, a lot of parents will say that why are you on the road cycling nonstop? Take a break. My father is actually very conservative and exactly like that. To give an example, my parents had not had rice and orange because they had taken a vow in the temple saying that unless their disability gets cured, we will not take rice. And they have done this for 10 years. Hats off to their sacrifice for over 10 years! That night, my father remarked, “You still need to complete over 300 kilometers. What are you doing? Go and cycle in the night." So, that is the switch that happened. Obviously it was not very easy because when I asked him permission for going to do these treks and cycling and running and all, he's afraid. But now that acceptance has sunk in, I think we just need to keep a tab so that this love does not get too much. Just treat them as equal as you will treat your other children. Sometimes we go extra cautious and extra concerned. I was looking for this Hindi word ‘moh’ (“मोह”) As they say there should not be too much of 'putra moh'. So we should have more love rather than 'moh'.
Parag: Thank you, Vineet. Some lessons for me! Yes, Ferose, and then Janessa. Ferose, think of yourself as a parent and where would you draw the line?
VR Ferose: I think my take is pretty simple that you have to be humble for yourself, but be ambitious for your children. You cannot be the other way round where you are ambitious for yourself and humble for your kids.
My son Vivaan, is nonverbal. And this is my own personal journey that I was pretty casual with my attitude and said yes, he's non-verbal, so he will probably learn limited stuff. But my wife was extremely ambitious and she's like, no, he will be at his grade level, doesn't matter. And so she would constantly teach him things, even though we were struggling with the idea -- like, he's currently in sixth grade in school, but he's actually being taught first grade classes; and I kind of accepted that stage, but my wife did not. And she would constantly teach him his grade level.
And a year back, we had a massive breakthrough and that breakthrough was through a technique called “rapid prompt method.” He was able to type/point to words and express himself, and then we realized that all these years, we’d underestimated his ability. He is super brilliant, he's listening to everything. And the last few weeks, I have been asking him extremely difficult questions and he seems to know everything. I casually asked him, who is your favourite TV anchor? And he typed Anderson Cooper. And I'm like, how did he know that? And then I realized every time I'm watching the news, Vivaan has almost memorized everything. Then I asked him, do you know what is happening in the U S right now? He said, “bad cops killed George Floyd.” And I'm like, how did he know this, right?
And suddenly, we realized that in the last eleven years, he's listening to everything and he has figured out every damn thing. And so, then I asked him, do you know where we went for vacation last year? And then he writes Sevilla. And I said, which country is Sevilla in? And he says, Spain. Then I said, do you know the capital of Spain, and he says Barcelona. And I am like, I have not taught him anything.
And that is a great indication that somewhere I was under-estimating and I was guilty of under-estimating him, because I had this blind spot, that he's less competent. But my wife, maybe that's how mothers are wired, that they don't accept mediocrity in their kids. They want to believe they are the best in the world. And she continued to teach him at sixth grade after she came back. And after my son came back home, she has been reading Harry Potter to him and now he knows Harry Potter inside out. I have not figured out Harry Potter yet, but he seems to know every damn thing. And suddenly we realized that his English and Mathematics are better than both mine and my wife's combined. And imagine how much it would have been a crime on my part to have underestimated his ability, and I think, that's where I say, we have to be ambitious for our children and not think that because they have a disability, they can't flourish or grow to their maximum potential. I think the only thing that parents have to do, is to maximize the potential of their children. Of course, you have to love them infinitely and I think we all do that, but never underestimate them, because they have a challenge.
Parag: Thank you, Ferose. Janessa, if you can quickly chime in.
Janessa: Very quickly, just because hearing the stories is so great, and my parents, I'm sure, are an anomaly and very strange, because our, my other brother, became a Navy Seal, which is the most elite military in the US, and I joined the CIA. And so you had two, off the wall, crazy kids and then David.
But what's so great is, they pushed him so much. The doctor said he would never ride a bike, he would never learn to swim, he would never, never, do all these things. He's a great swimmer, he rides, he loves his bike more than anything. And so just not accepting what limitations others were putting on them, just as they pushed us in so many ways, they just trusted us.They took David, like, he just goes on so many adventures, he jumps off waterfalls, he does these... I mean Go Kart. He goes so fast around these go-karts. Well, like, I was scared to death. I couldn't believe my parents were letting him do that and yet he was great at it.
So it's just, I guess, you don't know until you try and just that beauty of that trust and non-attachment like you said, Vineet, just allowing them or pushing them to discover for themselves what they're capable of.
Parag: Thank you. So I acknowledge so many questions on the feed to all of our participants and really appreciate, and thank you for writing them down and we'll take that offline, as we are running short of time. And I would move forward to closing remarks by all three of you, probably one and half minutes each. Thank you. We will start with Ferose, then Janessa and Vineet. A closing remark for one and half, two minutes each.
Ferose: Thank you. Maybe just one remark is that my defining moment was when I realized that I should accept what I cannot change and change what I cannot accept, and that has been the journey for a decade. I think, accepting Vivaan for who he is and really not judging him and then looking at the overall condition and saying, why is society non-inclusive, and what is it that I can do in my small capacity, to make a small difference, has been my personal journey. Thank you very much.
Janessa: I think for me, it goes back to the choice that Euphrates has taught me, the river Euphrates has forever taught me and that has just become such a mantra. And it is thinking about our world today, right now, and not just on this issue, but in so many issues, the othering is taking centre stage and it's just screaming at us from every headline. And is that the world that we want to choose? Do we want a world of othering, which in the extreme form is conflict and war? Or do we want a world of brotherhood, we want a world of this inclusive, diverse, incredibly beautiful family that spans differences in borders? And it's just, the choice is so clear when I put it to myself like that, and then how can I make that choice every moment, of every day?
Parag: Thank you Janessa. Vineet?
Vineet: Yes, so for me, actually, if you look, the story of a fantastic five, where we actually thought them as less humans, saying that they had no worth and the story of my brother, who was thought to be superhuman because of his memory, which where we considered him more than human. The idea is to just move from less human or that sympathy, or even from more human or exceptional skills, to be and treat everyone as Janessa has said, a brother and a complete equal.
And the wiser thing to do here is to just accept your suffering, with love and treat it as a gift. I don't think there is a choice. Don’t try to escape it. At the same point, don't try to rush into acceptance. For me, it was a journey. It did not happen, like, suddenly I woke up in the morning and I got that acceptance. It took time, it took me more than fifteen years to do that. So, for me, I think just move from attachment to love and treat your suffering as a gift. Thank you.
Parag:. Beautiful, man. Guys, we are eighty five minutes into the call, just, it went off like a blip. So much to converse. What I am struck and what I'm left with is, Ferose, thinking everybody is good at something, spots goodness in people on a spectrum, creates a humongous opportunity for the corporate world to see that goodness and lead with that goodness. Vineet says, everybody's good at something yes, but they are great at giving. The story of the magnificent five or the story of giving -- what he is leading with is how can I share my gift, as you all are sharing and living and sharing that gift, is beautiful.
And Janessa, to me, receiving the gift from her brother David, has changed her life. Thinking of people without disabilities, learning from people with disabilities, in a life changing way is so inspiring just to have the perception, just to have eyes for the goodness is so, so beautiful. And I think that would be saying that everybody's good at something, everybody's great at giving. And looking at goodness and learning from them, probably would be walking the first step to an inclusive world. And maybe it could be the last step, who knows. Thank you very much. Thank you all of you and everyone who have attended this. I will invite Rohit to do the closing.
Rohit: Thank you. Thank you everyone. And I would like to announce a special closing surprise, and I would like to do that by inviting Bhumika to sing a closing song. And it will not be far if we say that getting to listen to Bhumika, twice in a day, is as rare as the solar eclipse, which we have today!
So moving over to Bhumika for a closing song, and then, we will close the call with a minute of silence. Thank you.
Bhumika sings “Here comes the rainbow again” by Kris Kristofferson
Lyrics: “The scene was a small roadside cafe,
The waitress was sweepin' the floor,
Two truck-drivers drinkin' their coffee,
And two okie-kids by the door
How much are them candies, they asked her
How much have you got, she replied
We've only a penny between us
Them's two for a penny, she lied
And the daylight grew heavy with thunder
And the smell of the rain on the wind
Ain't it just like a human
Here comes that rainbow again
One truck driver called to the waitress
After the kids went outside
Them candies ain't two for a penny
So what's it to you, she replied
In silence they finished…
Got up and nodded goodbye
She called, hey, you left too much money
So what's it to you, they replied
And the daylight grew heavy with thunder
And the smell of the rain on the wind
Ain't it just like a human
Here comes that rainbow again
Thank you Bhumika and inviting everyone for a minute of silence now.
Thank you all for watching and thank you to all of the speakers and our special surprise singer and the moderator. And we look forward to seeing you again in a couple of weeks in our next talk. You can continue to get engaged, and there will be several ways, and you can continue to follow up because the intention really for hosting Awakin Talks is not just to have a talk, but also to build a movement in which we can co-create towards a more compassionate society and inner transformation.
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