Rohit began the Talk with a minute of Silence and then briefing about the topic, followed by Bhumika rendering a song. He introduced Parag and then invited him to introduce the speakers of the day. Parag then welcomed the speakers and shared a presentation throwing light on pervasive patterns of exclusion.

He introduced Ferose as the Founder and Visionary of the India Inclusion Summit. Ferose was happy to share insights of his 10-yr old journey with his specially-abled (Autistic) son Vivaan, who was diagnosed with Autism in 2010. Vivaan was 15 months old then. Ferose’s focus has been on driving system-level changes.

He defines Inclusion as “Creating a world where no one is left behind”. To him, disability is not only physical or psychological but its also about Colour, Gender, Race, etc. He described how he traversed the path from depression to anger to acceptance. Once he accepted, he moved from introspection to understanding the space of Disability.

He mentioned that today only 1% of people with disability have meaningful jobs. Each parent of a disabled child goes to sleep with a pertinent question – “What will happen to the kid after the parents are gone?”. He emphasized on the need to change the narrative around people with disabilities.
Way back in 2010, he started a program where he had hired three people on the Autism spectrum. They turned out to be even better performers than normal engineers. He proved it with data and evidence and the Management of SAP announced that they will hire 1% of their workforce from the Autism spectrum, of the 65000 numbers large workforce i.e. 650 employees. He even presented the data at the World Economic Forum. Thereafter, he spoke at the UN. This initiative was also covered as a Harvard Case Study. Few questions that he strives to answer through his work: -

• How do we change mindsets?
• How do we shift our lenses to a compassion zone?
• How do we view disability not as a category, but as a spectrum?

Ferose says “Never judge a person unless you have walked for a mile in the other person’s shoes.” We need to flip the majority to the minority – this has been his design principle across all the pillars of work that he does. Inclusion consists of seven different pillars – Awareness, Advocacy, Early Intervention, Education, Employment, Lifestyle, Assisted Living. He concluded saying that the topic of Disability must be seen holistically, as we live in a massively interconnected world and hence everything needs to be seen from a systems mindset.

The idea is to look at the journey of a disabled person with a Cradle-to-Grave approach. Once we think from the systems perspective, we will build a world which is truly inclusive, and no one’s left behind.

After Ferose’s talk, Parag introduced Janessa as the mother of three amazing children and a sister of elder brother David, who belongs to the Autistic spectrum. She is also the Founder and CEO of Euphrates Institute, which is a global, grassroots, peace-building organization turning 'Others' into brothers. She is also an ex-CIA officer agent.

She began her talk saying that her elder brother David has had the biggest impact on her life. Her personal journey started because of David. He is non-verbal, has mental disabilities and is severely autistic. However, she always found him “Being Himself” and he was consistent. He did not have a sense of consciousness or awareness. He would either bring out the best in people or the worst in people. This is because most people react differently to someone who is different. There was fear, judgement, violence, exclusion, impatience on one side and on the other side, there was incredible humility, tenderness, kindness, understanding and openness to someone who is different.

The opportunities that we have with people who are disabled are not so much about them but more for us. How do we react and who do we become when there is an “OTHER” in front of us? Growing up with David made her more sensitive and attuned to see past the differences of the “OTHER” and see the person’s humanity and worthiness as a Brother and not as an Other. After growing up with this model of principle of inclusion, she found herself in a war zone, where there is aggravated Othering. As a CIA officer agent in Iraq for almost two years, there her role was that of an Insurgency Analyst – to understand the enemy – the other. She shared an inspiring quote by Polish journalist Ryszard KapuÅ›ciÅ„ski Rise which goes as – “It is hard to justify wars; I think everyone loses them because it is a defeat for the human being. It exposes his inability to come to terms, to empathise 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.”

It exposes the inability to come to terms and to empathise 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. She said she was always struggling in that role, where there were lots of intimate encounters with the enemy and her head knew all the horrible things that the Iraqis had done to the Americans but and the heart always wanted to connect to the so-called other. Head always looks for separation and difference and the Heart always wants to connect. After a few days of this period, she found herself at the banks of the Euphrates river in another camp, where she experienced a sense of peace, beauty and stillness compared to the extreme noise of arms in the war zone.

This green patchy land running in the middle of the war zone brought insight to her – to choose between Life and Peace and Hope OR Death and Destruction and Darkness and her heart overruled her head. She went to her Boss and expressed her desire to quit as she chose Life and she didn’t want that feeling of helplessness anymore and she wanted to build the Iraqis as her brothers and at the end of her term there, one Iraqi soldier told her that they felt her be an Iraqi and that meant Life had come full circle. She concluded by saying that we (who are not on the spectrum), are the ones who need healing and help because the people on the spectrum are consistent.

Next, Parag introduced Vineet Saraiwala, who has a rare type of visual impairment called Retinitis Pigmentosa which is a degenerative disease, where the vision of the patient deteriorates with every passing year. He got his MBAMasters degree from IIM Bangalore and he has spent a lot of time cycling mountaineering in the Himalayas. The beauty is that he has found his purpose in serving others. His is a rare story of accepting his limitation and transcending the disability and using it to serve the others.

Vineet began with the story of the Fantastic Five girls from Sri Arunodayam in Chennai, who were abandoned because of their disability. When COVID struck, they desperately wanted to help others and started making 300 cotton masks per day and distributing it free. He says he did a course of Vipassana meditation retreat and that he found his condition as the best example of impermanence in his our day to day life. He then narrated his experience where one of his eyes got damaged due to the mistake of a doctor. and it was very visible to people. He then started avoiding going in public and he was harbouring a lot of hatred for the doctor. He says after so many years, he has accepted this and has forgiven him. He said that there must be a shift from Attachment to Acceptance and from Suffering to viewing it as a gift. He proudly shows his family photo where he and his brother Anuj graduated on the same day with the help of three beautiful teachers. He narrates an incident of an Investment Banking meeting where his brother Anuj’s (who has the same eye condition) had the screen reader stopped functioning conking off during the crucial meeting. Anuj went on to spell out all the figures from his sheer memory, that the other attendees of the meeting were reading on their spreadsheets and printed paper.
One more project which Vineet has played a key role is Big Bazaar’s their Shoppers’ project, where 150,000 shoppers with disabilities shopped with assistance, accessible trial room and quiet hours. When asked how he made this project successful, Vineet attributed the credit to team members who were much lower in the cadre but much higher on the sensitivity quotient. During the shopping project, they had an incident where a shopper had a meltdown and though their policy prevented assistants from touching the shoppers, an assistant went out of her way and nudged the shopper and gave her a glass of water to make her feel comfortable. The mother of the girl became tearful on seeing her daughter being respected and treated as an equal for the first time. E.g.: - A security guard.

He said people are feeling bogged down in the lockdown but think about the people with disabilities who have been locked down for several years. During the shopping project, they had an incident where a shopper had a meltdown and though their policy prevented assistants from touching the shoppers, an assistant went out of her way and nudged the shopper and gave her a glass of water to make her feel comfortable. The mother of the girl became tearful on seeing her daughter being respected and treated as an equal for the first time. He then showed a picture of his trek to Ladakh where he was crying for Maggi at a very high peak point but his partner cyclist didn’t give in to his cries. He sternly motivated that they had come to cycle and should cycle the whole way. Then hHe also showed a pic of his at the Khardungla Peak, along with Lieutenant General. He conquered the Peak cycling (which is more difficult than walking). He was happy that he was treated as an Equal.

Q & A session

Q. When we talk about inclusion in general, we talk about physical or intellectual disabilities? What about people with mental disabilities?

Ans. Speaking honestly Janessa said we all are on the mental disability spectrum. Mental health has become an epidemic in the US, especially with the youth. She said we choose not to look at darkness, but when we are so wildly afflicted then you can no longer ignore. Hence, she suggested not to exclude any particular group of people just because they are the “OTHER”. Let’s accept and make it less painful for them. Lets accept and think about “How do we change for them?” rather than changing them.
Ferose commented that more people will come out of Covid with mental health issues. He added that the first problem there is of Diagnosis. Just as we take medicines for physical ailments, so is depression. Categorisation of Disabilities is extremely important as Systems and Funds are designed around it. The American law defines Disability as anything that hampers your day-to-day functioning. Indian law defines Disabilities through a very limited set like – blindness, deafness, etc. It took us many years to expand the definition from 7 to 21 disabilities. Hence, we have to think from a holistic perspective to answer this question.

Q. How do you balance Safety & Care to give them importance and help them love their life in their own way while becoming functionally independent?

Ans. Vineet narrated about his ultra-cycling race, when he had finished about 270 kms and had called his father at 1:00 am in the night, who instead of asking him to rest told him that he has 300 more kms to cover and there was no time for him to rest and he needed to buck up. He contrasted that with earlier times where his parents did everything possible and imaginable to try to cure their son, including many rituals which are quite common in India like His parents had vowed not to take rice or orange till their sons’ disability is cured. He spoke about keeping a tab and being watchful that Love doesn’t become Attachment.

Ferose mentioned – “Be humble for yourself but be ambitious for your children”. Never underestimate them because they have a challenge. He gave an example of how his wife was ambitious for their son Vivaan, who is on the spectrum and is non-verbal. He was being taught lessons of Grade one when he was in Grade six. They discovered that Vivaan is super brilliant and can memorise almost everything and now he is learning grade six lessons as well due to her confidence in him, which I many times didn’t have. He said that the only thing the parents must be mindful about is to maximize the potential of their children.

Janessa explained how her parents pushed all the three children and didn’t accept any limitations that others had put on them. Encourage your children to achieve their maximum potential and never underestimate them because they have a challenge.

Closing remarks: -

Ferose – His defining moment was to Accept the things that he cannot change and Change the things that he cannot accept. That has been his journey for a decade.

Janessa – What stood out for her is that right now OTHERING is taking a centrestage and screaming at us from every headline. So, we need to answer if that is the world we want to choose, or we want a world of BROTHERHOOD? We can make that choice of an inclusive, diverse, beautiful family.

Vineet – Treat everyone as a brother and as a complete Equal. Move from Attachment to Love and Accept your suffering as a Gift and Treat it with Love. Don’t escape and at the same time don’t be in a rush to accept it. It’s a journey.

Parag concluded saying that looking at their goodness and learning from them is the first step to an inclusive society.
Rohit then invited Bhumika to sing a closing song and the talk ended in a melodious joy of love.

Here is a flipbook of the moments from this call, put together by a volunteer :)

The audio and video recordings are here