Practitioners Perspectives // October 22,2021

How One Quadriplegic Activist is Breaking Barriers to Provide Dignity for the Disabled

Featuring: Preethi Srinivasan , Founder of Soulfree, Writer, Inspirational Speaker

Featuring:

Preethi Srinivasan Founder of Soulfree, Writer, Inspirational Speaker

PREETHI SRINIVASAN calls herself a ‘Cripple who is Whole’! A national-level swimmer, state-level cricketer and excellent student, Preethi suffered a spinal cord injury at the age of 18 which left her paralysed below the neck. Despite losing her sense of identity in a split-second, Preethi re-emerged like a phoenix to become the founder of “Soulfree” (www.soulfree.org) a public charitable trust that is working to improve the quality-of-life of persons living with Spinal Cord Injury in India. She is an award-winning disability-rights activist working to create an inclusive India, a public speaker, writer, agent of change and currently a PhD scholar at IIT Madras.

Take us through the journey of your battles between your emotions and reason?

Emotions rule when trauma happens. My life was charmed for the first 18 years. Not a shadow of failure touched it. Everything was so good that I did not know anything otherwise. So, when I was faced with a life altering condition, it was something that an 18-year-old could not understand or absorb. And when the world turned its back on me, I turned my back on the world. I rejected my circumstance and felt that I do not deserve it. Why me? How could this happen to me? But then logic and reason came from my father. He said, your body is not cooperating with you. If not now, it might not cooperate 50 years from now. Everybody’s body stops cooperating on some level at some point, so why don’t you think that you have been given something in advance mode. And why don’t you go inside yourself and find within you what cannot be taken away by circumstance. That was the trigger point that led me to a journey and at the end of that journey I understood that I need not be a victim of circumstance, but a victor and I should not let my circumstance define me.

Were there any key inflection stories in this journey and how did you find your larger purpose?

It has been a steep learning curve. I have gone through situations of utter helplessness. The main trigger point was after my father passed away at the age of 57 due to a heart attack. He was my rock, my connection to the external world and my best friend. We were in a situation where we did not have an income, we did know what our financial situation was, we did not know anything. And from that point, we had to rebuild our lives brick by brick. It was a true reinvention of our identity and our way of life. My mother then needed a quintuple bypass and at that point I did not have a caregiver. How would I get from the wheelchair to the bed? How do I take a bath? Most people take these things for granted. We are not fighting for survival, we are fighting for achievements, money, ambitions. People do not understand how vulnerable we get when our very life is at stake. From thereon I felt very vulnerable.

When my mother was in the hospital, my father’s friends asked me “What if there comes a time when your family is not there to support you?”. I then did a lot of research and found out that even if I can afford it, for a woman in my condition, there is no place to go live with dignity. My mother then told me “You be the change. I have faith in you”. I was hesitant. I can’t take care of myself. I can’t find caretakers for myself. I had no connection to the outside world for over a decade. How will I help others? I knew nothing about diplomacy, law, accounts or what it takes to run an institution. I felt I could not do this. But these were excuses. In truth, what was driving me was the fear of failure. Fear that I would start something and fail at it.

We stayed in Chennai for 3 months and when we returned to our home in Thiruvannamalai, I found out that two girls that I knew had committed suicide. These girls were only paralysed below the waist and could cook and clean the house, but their families told them that they were a shame, a burden and a curse to the family. And because of their condition, nobody wanted to marry their brothers. Every day their soul died a little until eventually they consumed poison and died. This felt like a slap on the face, and I thought that if I’m going to be afraid to speak now and to be the change, then I’m part of the problem and I could not do that. And that is how Soulfree happened, and this is my larger purpose. Soulfree has set my soul free, and I am using that to set other souls free so they can live with dignity and purpose.

I read that you had a spiritual awakening. How did this transform you?

I think it is tragic that our education teaches us everything about the external world, but it never teaches us to assess ourselves. Where am I? Why am I acting this way? What is the connection between my thought process and what I’m doing? What are my goals? None of this is taught. So, most of us are emotionally and spiritually disconnected from ourselves. I feel that it is a blessing that I was forced to go into a body that is not working, a body that is not supporting external activities and therefore go within to find the answer to the question – Who am I? If I am not this body, then who am I? What have I lost by losing control over this body? It is nothing but my illusions. Other than my thought that I have control over everything, I have not lost anything. Losing that illusion was a wonderful thing.

Through 2 near death experiences, I found that all my fear was gone. When I speak in schools and colleges, I tell them that the top 2 fears according to Google are Public Speaking and Death. So, I have nothing to be afraid of as I have done both. I have nothing to lose and everything to gain. Each moment that I am on this planet, I consider it a blessing.

I have a quote, “True success is not that person who has everything – because he has everything to lose, but one who needs nothing. And in this moment, I need nothing to be happy.”

How can Preethi Srinivasan become like a Stephen Hawking?

I cannot compare myself to Stephen Hawking, but our ultimate goal is to ensure that nobody is forced to commit suicide because of their physical condition that they have no control over. Our way of expanding is going to be threefold. The first phase is already ongoing, and these are Outreach operations. For the last 8 years we have been supporting people who have spinal injuries and are facing a lifetime of paralysis. We do this through financial support; mobility aids or medical care and we help them lead a life of dignity and purpose and we try to help them be as self sufficient as possible. For example – we helped a person who knew nothing but farming. He came to us asking for a Rs1000 monthly stipend because he had no income. We helped him set up an acre of land to do agriculture and in the first year alone he made 100 sacks of rice. He now employs 15-20 people. So, we will continue to do our Outreach program.

In the second phase, we have now started what we believe is India’s first Integrated Spinal Rehabilitation Centre or INSPIRE centres. This is in a 20000 sq.ft. facility in Thiruvannamalai and we will provide self-reliance training, medical treatment and give people a reason to live through music and art and everything to make them feel alive and happy. We will also provide vocational rehabilitation so they can be financially self sufficient when they leave our facility. This is a rehabilitation and research facility in the holistic management of spinal cord injury.

As part of the third phase, we want to start an inclusive village. We are calling it the Soulfree Shambala Village which will provide hope, happiness, inclusion and a way for people to live a life of dignity and purpose. I use the word dignity a lot because it has no value and is taken for granted but for us it means a lot. Any place that does not have a ramp, I have to be carried and it is humiliating. Can’t we have the dignity of a ramp? Is that too much to ask? We want to create a village where nobody has to ask for a ramp. A place that is universally accessible. A place where people in wheelchairs can run sustainable businesses or be employed in one. A place where people feel that their life has meaning, and they can live without the fear of being pushed to commit suicide or the fear of being abandoned. That is the ultimate goal. I do not know if there is such a place anywhere in the world. It is something pioneering, and we can use all the support we can get.

What are some of the struggles that people do not appreciate?

Unless there are 2 people, I cannot get in and out of bed. Unless my 70-year-old mother is there next to me, I cannot brush my teeth, have a bath and wear my clothes. I cannot give her a retirement as there are not enough trained caregivers, and the few who are there are prohibitively expensive. One of the things we wish to do is to start caregiver training to those from marginalised sections of society. This will ensure that we have caregivers while also giving them a livelihood and a reason to live. Sometimes we feel like we are in a battle we cannot win. Even with all the things I can do in this lifetime, I will still only be touching the tip of the iceberg. Its all about impact. How many lives can you impact? In 8 years, I have been able to impact 1000 lives, but I want to impact a lakh of lives. Its not just an ambition, it is also because I know that 35 people have died due to bedsores in the last 6 months and I have failed because I could not save them.

There was a smart enterprising young boy who had a similar accident like mine, and we really connected. He loved to sing and do mimicry but unfortunately, he was living in terrible circumstances. His father was abusive, and his mother was his only support. They were living in a tiny house. One day, his father abused his mother to the point where she decided to hang herself from the only ceiling fan in the house right above his bed. Being a quadriplegic, he could not do anything other than scream for help. By the time the neighbours rushed in to help, she was badly injured. He called me and was crying on the phone that he wanted to die. I found a place in a rehabilitation centre for him, and he blossomed so beautifully because he was able to talk to people and he could get physiotherapy. But once he returned, he was in the same circumstance. And a couple of months back during the pandemic, he passed away. He was less than 30 years old. I feel like I’m failing each time I lose a life and that is what I want to change. And I want the whole world to know about this because nobody deserves to live this way.

How has your approach to time changed due to your current circumstances?

Time is perhaps the most valuable resource, because once its gone there is nothing you can do. My association with time is that I know that I should not even be alive. I was dead for 8 minutes. Everyone knows that when the brain does not get oxygen, you start to die and the cells start to die and even if you survive, you could suffer brain damage. But the fact that I am still here with my brain still intact, it means I have been given a task. I feel I am close to god and god is my knight in shining armour. Every minute I am here, I want to impact lives, spread love, laughter, light and positivity. I want to show the world that each of us are positively abled, even those who feel that they cannot accomplish things. There might be stages in your life where you feel you can’t – whether you feel you cannot pass an exam or can’t be in a relationship. What I have learnt as a quadriplegic in the last 22 years is that life is not about what you cannot do, it is about what you choose to do with what you can do.

There are many people who have different types of fears and others who have emotional and psychological issues but are afraid to speak about it. When we look at them, they look alright, which is why we need to stop judging people. Each of us are unique, we should just love each other just the way we are and stop comparing. I want to spend my life giving love, light and laughter and try to impact as many lives as I can on this planet. My life is for Soulfree and till there is breath in this body, this body will serve.

QUOTE IN FOCUS

True success is not that person who has everything – because he has everything to lose, but one who needs nothing. And in this moment, I need nothing to be happy.

QUESTION IN FOCUS

How can organisations and individuals contribute to the cause?

The best way is to go to our website www.soulfree.org which contains details of all our projects. If you are inclined, you can make a monetary contribution. You can also register yourself as a volunteer. What we need are people with love and who will value us. Come sit with us, talk to us, play chess with us, watch a movie with us, read to us and this will make us come back to life. And in that friendship, you will also gain something. We want to do lots of community-based activities. Even right now, we are doing a gift box donation drive for 700 people and each box contains 43 essential items and medication. We needed volunteers to help with procurement and to package them all. So, we need all the help we can get. If you are an Occupational Therapist, Physiotherapist or anyone in the medical field then we need your help. If you are an artist, dancer, teacher or can even teach Zumba, we can use your help. The greater the number of people who come to know about our work, the better. We have no expectations; they can engage as much or as little as they want.

Preethi Srinivasan Preethi Srinivasan

Founder of Soulfree, Writer, Inspirational Speaker

PREETHI SRINIVASAN calls herself a ‘Cripple who is Whole’! A national-level swimmer, state-level cricketer and excellent student, Preethi suffered a spinal cord injury at the age of 18 which left her paralysed below the neck. Despite losing her sense of identity in a split-second, Preethi re-emerged like a phoenix to become the founder of “Soulfree” (www.soulfree.org) a public charitable trust that is working to improve the quality-of-life of persons living with Spinal Cord Injury in India. She is an award-winning disability-rights activist working to create an inclusive India, a public speaker, writer, agent of change and currently a PhD scholar at IIT Madras.

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In my career leading and building high-performing teams, I enjoy inspiring & coaching employees to unlock their potential for maximum performance. The team's success is my deepest delight. Global Coaching Lab provides the platform to put this into practice every day and fulfill my passion of making others great.




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