Monday, June 18, 2018

The Free Soul

The founder of SoulFree, Preethi Srinivasan is truly a force to reckon with. Here is her story.

My story

I had an absolutely blessed and blissful childhood. I'm the only child of Vijayalakshmi and Srinivasan, a loving couple, who did not have any children for nine years after their wedding. So, when I was born after lots of penance and prayers, my parents, grandparents and everyone filled my life with unconditional love. My father had always dreamt of learning to swim like they do in the Olympics, but did not have the opportunity. So, when I was just three years old, he enrolled me in swimming classes and by the age of eight, I was a state level medallist.

Somehow, I seemed to have a deep connection and passion for cricket and my father encouraged me. Never once did my family ever discriminate against me on the basis of gender. My father would always say, "Even if you want to be a mechanic, I will support you, but you must be so passionate about what you do that you become the world’s best mechanic." I feel blessed that I had such wonderful parents and family. My father's job required him to keep relocating, and we would move almost every year. The 12 years of school, I ended up attending nine different schools in three different continents. At the time, it was really difficult to always be 'the new girl in school', but I now understand the immense value of that kind of exposure to various cultures, traditions and lifestyles. After I completed school in the USA, my father and I decided that I would return to India. It was not a popular decision, because at the time everyone in India seemed desperate to study in the US. However, we did not want that because we are very patriotic my nature and it was my dream to represent the country in cricket. So, I returned to Chennai and joined a consolidated five year MBA course.

At the completion of the first year, I went to the US to be with my father and we had a very memorable summer vacation, during which time we drove through the length of California. I returned to Chennai on July 7, 1998. My life was perfect and the possibilities seemed infinite, but we did not realise that life was going to change. On July 11, 1998, I joined my classmates for an excursion (college trip) to Pondicherry. In the afternoon, after lunch, we decided to play on the beach. After a little bit of tennis ball cricket, the heat got to us and the boys decided to go for a swim. We girls were holding hands in about thigh-deep water, when a wave ate the sand under my feet. I stumbled and being a seasoned swimmer, when I knew I was going to fall, I just dove into the water.

As soon as my face went underwater, I felt a shock-like sensation travel through my body and instantaneously, I could not move anything. I tried to stand, but nothing happened. I held my breath and waited. Apparently my friends thought I was playing a prank, because I was an ace swimmer, but when they realised something was wrong, they immediately pulled me out. From that moment, I was paralysed below the neck, but I thought it was some kind of underwater shock that had hit me and that it would wear away.

I organised my own first aid and was taken to a major hospital in Pondicherry, where I was denied emergency medical care because it was an "accident case". Since then I have been a quadriplegic, paralysed below the neck as my neck had broken causing a severe spinal-cord injury. My life as I knew it was over, but a whole new one was beginning. I lost my entire sense of identity that had been based on my appearance, achievements and social factors. Suddenly, I became invisible to the world, and I didn't want to live. It took me several years to come full-circle, with the support of my parents and the grace of my spiritual masters. After that, I started mouth painting, doing online work but, when I tried to enroll in a distance education program a bachelor’s degree in psychology, I was hit in anyway.

A person, who had graduated school in the top two percentile of the entire American population, was bestowed with 'The Who's Who amongst America's Students' award and could have easily joined the top universities in the world, was denied admission into a long-distance program. I was told by many universities, "There are about 15 days of practical classes, no lifts (elevators), no ramps, don't join." I was devastated by this rejection, because I could not really understand why I was being discriminated against. My father encouraged me to improve my knowledge and bought me many books, but since about 2002, till his death in 2007, I did not pursue any formal education.

Later, I completed a bachelor's degree in Medical Sociology, as it did not have any practical classes. When I wished to join Masters in Counselling Psychology I was again rejected. This time, Soulfree was just getting launched, and the media supported in fighting the case. Soon, I was allowed to join M.Sc. Psychology and we were victorious in setting up functional ramps at the Distance Education building (IDE) of Madras University in Chennai. Today, I work full-time using a speech activated software as a writer in a movie-based website. I'm very proud to say that I'm able to provide for my family and am not a burden to anyone, but this transformation has required years of introspection and penance.

Preethi's TEDx talk

The birth of SoulFree
Since 2000, my parents and I moved to Tiruvannamalai, a little temple town in Tamil Nadu, South India and started leading a spiritual, ascetic life. We cut ourselves off completely from the rest of the world and created a happy bubble for ourselves. However, reality struck when my father suddenly died of a heart attack on June 12, 2007, with no prior warning. Four days later, my mother also suffered a heart attack, and later, needed bypass surgery.

At this critical juncture, my parents' friends came up to me and said, "What is your future going to be like, if there comes a time, when your parents or family are unable to care for you?" I was devastated. When I found the courage to research about the possibility of long-term rehabilitation centres, that were equipped to care for personal my condition, I found an even more shocking truth.

There is NO long-term rehabilitation centre for a woman with spinal-cord injury, anywhere in India, as of now. A spinal-cord injury can happen to anyone at any time. It causes permanent paralysis below the level of injury and currently, there is no cure for it anywhere in the world. The statistics in the USA are that a spinal-cord injury happens every 38 minutes and there are more than 250,000 quadriplegics living in the US alone. However, in India, there is neither awareness about this condition, nor any statistics are available. We are one fifth of the world's population, and 50% of these are women, but if any woman should suffer a spinal-cord injury there is nowhere for her to go. When my mother heard this, she simply said, "you be the change. I have faith in you, you can start the centre." I laughed it off because I felt that practically, I was not capable of running an organisation. Then three months after my mother's surgery, we returned to Tiruvannamalai. Within three months, too paraplegic girls I personally knew were forced to commit suicide by their own families.

They were told that they are a shame and a burden on the family and that nobody is willing to marry their male sibling because they would be forced to care for a paralysed person; that no one wished to associate with them at all. So, poison was left next to them, they drank it and died. I was completely shattered. My world is very small and if such things are happening in it, I could not imagine how frequently it must happen all over India. I said to myself that if I did not do something now, if I kept quiet because I was afraid to fail, I would be part of the problem, not part of the solution. So, that's how Soulfree was born.

A journey and its many milestones
Personally, some of the key milestones in my life are –
- Becoming a state level medallist in swimming at the age of eight
- Joining cricket coaching at the age of four, becoming a playing member of the Tamil Nadu senior women’s for getting at the age of eight, and becoming the only Captain to lead the state team (under 19) to victory in a national level tournament in the history of Tamil Nadu women’s cricket
- Graduating from Upper Merion High School with distinguished honours
- My accident
- Moving to Tiruvannamalai though the
- Near death experiences in 2001 and 2008 that completely shifted my state of being
- My father’s death
- Getting my master’s degree
- Starting Soulfree – whenever our projects’ positively impact people, I feel blessed. In the last five years, Soulfree has grown leaps and bounds, and our projects are transforming the lives of hundreds of people living with spinal-cord injury in India. I can only say that I feel privileged to be an instrument of change and am committed to keep working to improve the quality-of-life of persons living with severe disabilities like spinal-cord injury in India, especially women. Perhaps our greatest achievement is in being a ray of light and providing hope to those who
have none.
- My motivational talks – when young college kids stop smoking or drinking because of
something I said, when accomplished professionals suddenly change their perspective of life
and their priorities, when people tell me that I am and inspiration, a role model to them, I feel that my life is serving a greater purpose
- Just the knowledge that people find me Worthy of awards, because they know that I'm
attempting to lead an authentic life, with integrity and with a goal to serve humanity, then I
know I'm fulfilling my highest potential in life.
I have stated these, but I’m not really identified with any of these things. For as long as there
is a breath in this body, I wish to keep doing my best, to keep living in truth and with integrity. I’m filled with happiness, contentment and peace of mind, in the present moment and all I want to do is keep spreading love, laughter and light in this world.

Meeting challenges
My whole life is lived outside the comfort zone – it is difficult emotionally, physically, and the biggest challenge is to find humour, the silver lining and ways to grow through it all. The helplessness and dependence are the biggest challenges that one can never completely
transcend. When you are faced with a lifetime of being paralysed below the neck, of not being able to sit or stand on your own, of not having control over the most basic things like urination or bowel movements, of not being able to move your fingers, of not being able to change the channel or have a bath or any number of things that most people take on a day-to-day basis and of knowing that nobody can really understand how difficult or painful it is to accept, these are definitely major challenges.

I start working at around 10 AM and finish work sometimes as late as 10 PM. Soulfree has no employees, I do most of the work myself, although we have amazing volunteers who support me on many of our projects. I had to learn so much in terms of handling finances, making important decisions, fulfilling income tax, banking and legal aspects of running an NGO, it was a steep learning curve indeed. Working full time, to still find time to look after all of Soulfree's projects, update the website and other social media pages, travel for talks and awards ceremonies, and still have a little time to spend with my friends, it's a huge challenge. To a large extent, my motorised wheelchair has solved my helplessness. I race around everywhere, and have even completed 11 circumambulations (paradakshina) of the holy hill, Arunachala – a 15 km journey from start to finish in the last couple of years. I go out shopping and feel really pumped when I don't have to depend on anyone.

My speech activated software is a boon to me as it allows me to use the computer absolutely independently. I can type at the speed of my dictation, with accuracy and ease. It allows me to work as a writer and earn a living. For a long time, I did not care about my appearance at all. However, when I began to come out of it, I realised that I was quite overweight. As a spokesperson, I never had to count calories, but a quadriplegic cannot eat like everyone else, because there is virtually no exercise.

After a great deal of research, I changed my diet completely and also cured years of problems with constipation. Now, I have lost 10 inches off my waist and feel happy that once I figured out a problem, I could research to find the solution, work towards its implementation and successfully achieve my target. For nearly 16 years after my accident, I never travelled by aircraft because I had a very painful experience, while returning to India after my accident. However, now I'm a different person, and I confidently travel to many places in India on a routine basis. I was also provided a specially altered vehicle, which allows me to travel within the southern states, quite comfortably. So, the saying, where there is a will, there is a way, is completely true.

If one is able to transcend the limitations of the body mind due to clarity of thought and determination of action, then anything is possible. Let the challenges keep coming, I’m confident that they will keep helping me grow into more evolved and better human being. And, that I suppose is the greatest gift of challenges, when we start to enjoy them and develop a positive bring-it-on attitude, then nothing can really bring us down.

Dealing with resistance
Living in a rural area, I have faced a lot of resistance. There is no concept of wheelchair accessibility at all here. People are insensitive because they don't know any better. I just had to realise that it is really not my problem – I am as I am, and if anybody judges me negatively, it is due to their ignorance and insensitivity rather than my condition. I accept myself as I am, and nobody can take away the peace, happiness and sense of contentment I live with.

Now, I'm able to use humour to talk to people openly and change their views. My public speaking is geared at changing perspectives, especially prevailing ideas about persons with disability. Slowly, but surely, I really believe that we can fundamentally change the idea that persons with disability are somehow “less than” and show people that we are positively-abled warriors, who do not wish for pity or sympathy, we just need opportunities to prove that we can become productive citizens.

Perhaps the greatest resistance I have seen in society is in the area of sexuality. There is a notion that persons with disability are asexual and do not or should not have any wish for a meaningful relationship. This is going to require a very deep change, but a lot of work is happening to raise awareness as well as provide platforms for persons with disability to meet other like-minded people. There are lots of positive changes, but there is a lifetime of work ahead and a great deal of awareness that needs to filter into the minds of people for fundamental changes regarding equal opportunity, wheelchair accessibility and other aspects that would transform the quality-of-life of persons living with severe disabilities in India.

Looking ahead
The major areas we need to overhaul to address the needs of people with disability effectively are:
 Wheelchair Accessibility – Soulfree is working on many levels to ensure that all public
buildings, government offices, educational institutions, recreational centres like movie
theatres are wheelchair friendly on a mandatory basis.
 Improved Opportunities – Persons with disability should be given appropriate, if not equal opportunities in education, employment, entrepreneurship, and sports.
 Government Support – there is almost no support from the government in terms of medical and vocational rehabilitation, caregiver training, medical insurance or maintenance of quality-of-life for persons with spinal-cord injury or any other significant disability. This needs to change in a big way.
 Discrimination – perhaps the biggest change that is required as in the general view that most people have, whether it is ordinary citizens, government officials, employers or even family members to think that a disabled person is unworthy of equal treatment. If we recognise that all of us are disabled to some degree, many of where corrective-spectacles or have some flaw and if we do not now, we will in the future. So, why not just accept differences and try to enable and empower instead of judge and belittle.
As a person with spinal-cord injury, as a woman with disability in India, I just wish to say that we do not need or expect pity or any sops, we just need a level playing field to fulfill our dreams and have an equal chance to lead a life of dignity and purpose.