Monday, January 22, 2024

‘I Was Paralysed At 18 & I Deserve to Live’: This Woman Is Changing How India Treats Disabilities

A single conversation, a person, or a meeting can change you. If it is with Preethi Srinivasan, it would most likely alter the way you look at life. Preethi has faced every challenge that life has thrown her way, carving a path to help others when she was in dire need of help herself. 

The 42-year-old is far from ordinary. Born in Chennai and raised across three continents, the world was really her oyster. The national level swimmer started swimming at the age of three. 

Shortly after the 1983 World Cup, inspired by Sir Vivian Richards, she also started playing cricket at four. Playing for the Tamil Nadu state team at just eight years old, she was the captain of the under-19 state team. 

With her sights set on joining the national team along with achieving excellence in academics, she felt that everything was going her way.

“Not even the shadow of failure had touched my life,” she explains.

But, everything changed in the blink of an eye when she was 18. Enjoying with her friends on a Puducherry beach, she suddenly fell down while playing in the water. A spinal cord injury left her without any feeling under the neck. 

Through the unwavering love and support of her parents, and her incredible resilience, she emerged like a phoenix, and today provides wings to hundreds of people with spinal cord injury through her venture ‘Soulfree’, a charitable trust.

Soulfree INSPIRE (Integrated Spinal Rehabilitation Centre) in 2013, the trust’s rehab centre, provides holistic treatment, rehabilitation, medical care, education, counselling, employment opportunities to persons with spinal cord injuries for free. The 20,000 square feet facility in Tiruvannamalai, Tamil Nadu, has helped over 200 people with severe disabilities live a life of dignity so far.

Swimming against the tide

Preethi has helped over 2500 people with spinal cord injuries
Preethi has helped over 2500 people with spinal cord injuries

After the accident, Preethi was in shock and faced a really tough time. From excelling in all spheres of life, being confined to a wheelchair broke her spirit.

“My heart was totally broken. I had a privileged existence for the first 18 years of my life. I was showered with love at home, was in the top 2 percent of students in America, played cricket with legends, was extremely fit and beautiful. I was making my way towards success, when the accident left me in complete shock,” Preethi shares with The Better India

She adds that from being able to throw the ball with full force, she was unable to even move her little finger. 

“From being extraordinary in every way, I suddenly couldn’t even feed myself, bathe myself. I couldn’t even get out of bed. It really broke me,” she adds.

Her parents stood by her like rocks through this entire ordeal. Her father quit his job to take care of her and they moved to Tiruvannamalai, a spiritual, temple town, to heal.

Preethi then tried to get admission to a correspondence course for BSc Psychology, but she was rejected as there were practical classes and the colleges were not disabled-friendly. There were no elevators or ramps.  

She remembers being asked, “Why do people like you come to study?” Her father, her biggest cheerleader, bought her books to study, and motivated her to educate herself, degree, or no degree. He would read out to her from various books across genres, from fiction to educational books to spiritual books. She would fight with him, but he didn’t let go of her hand, and helped her overcome her pain. 

Just as she started piecing her life together, another big wave hit her. Her father died of a heart attack in 2007, and just four days later, her mother, too, had a heart attack and had to have a bypass surgery. 

“My world was rocked again. I had an 80-year-old grandmother to take care of. We had to go to Chennai for the surgery. We had no idea how we would manage the next meal or who would even help me sit on my wheelchair. I had to start earning money and life seemed difficult all over again,” says Preethi.

At this point, her friends reiterated the need for her to get a formal degree. She took up BSc Medical Sociology as it had no practical exams. She also did MSc in Psychology despite wanting to do counselling psychology.

“I wanted to counsel people as my voice is the only thing I have. I was denied admission and had to settle for psychology,” she says.

‘We too deserve a life of dignity’

Rehabilitation is provided free of cost at Soulfree
Rehabilitation is provided free of cost at Soulfree

During this time, as she grappled with getting an education and a treatment for her mother, she encountered two deaths that shook her to the core. 

“Not wanting to take care of them, two paraplegic girls who I knew were apparentfly poisoned by their families. It left me wondering, India has one of the largest populations and yet there is no place for a quadriplegic or a paraplegic person to live with dignity. There was no one to take care of me when my mom got sick,” she adds.

She then started researching and found that there weren’t many long-term rehabilitation centres or places that offered care for people with spinal cord injuries. Her mother then persuaded her to start such a haven that provides a life of dignity for people with severe disabilities. 

“At first, I laughed off the idea as I had no clue about running or financing a non-profit organisation. But the death of these girls made me wake up. If I am just going to be afraid to do something, I’m part of the problem. No one understands this better than me due to my lived experience. I decided to raise my voice and do whatever I can to somehow uplift this segment of society because we’re so completely invisible,” she adds.

With this in mind, she started Soulfree Inspire. People come with a caregiver and spend about 6 months in the centre. They receive training, which Preethi calls re-engineering, where they get emotional and physical rehabilitation. 

“We restore their will to live. Our aim is to restore self-reliance from a physiological, psychological and socio economic perspective. It’s important for them to go home and be able to earn some money. We are giving international standards of care free of cost. We have physiotherapy, occupational therapy, hydrotherapy, sports, counselling sessions, training sessions, tailoring, computer classes and more. It’s a holistic system born from an experiential framework,” adds Preethi.

Soulfree also offers knowledge and awareness programs about spinal cord injury. They have a special focus on women and provide a support system to those with severe disabilities through educational and employment opportunities. They also provide wheelchairs and medical care to those in need. To keep everyone’s spirits up, they also have conference calls.

Karthikeyan (25), was bedridden after he fell from a tree three years ago. He came to Soulfree six months back and is now able to walk with a stick.

“Being bedridden made me contemplate ending my life. I also had some bedsores. I was using a wheelchair. Now, I am able to walk using a stick and do my daily chores and have learnt tailoring and computers, which I will use to support myself once I’m back home,” says Karthikeyan.

Preethi is also working with the Tamil Nadu government to include rehabilitation in the government insurance scheme. She is a member of the advisory board for the ‘Welfare of the Differently-Abled’ in Tamil Nadu.

“Most people, after a spinal cord injury, go home and don’t know what to do. The government should work on providing proper recognition for our disability and with employment opportunities for people like us,” she says. 

What gave her the strength to do so much while she herself faced innumerable challenges in her daily life? 

Preethi's parents were her greatest support
Preethi’s parents were her greatest support

“I came to understand that instead of feeling sorry for myself, I should try to make use of the opportunity of the challenge because otherwise life would have been too easy for me. When you have special abilities, you are given special challenges. If you succeed when everything is going your way, it’s not a big deal. It’s when you have to box with your hands tied behind your back and save the world, that’s when it’s a victory,” she smiles.

She still has days when she feels low, that’s when she gets on a conference call with her friends from Soulfree, who tell her that life will get better. Soulfree has helped over 2,500 people so far. 

“These lives are invisible and the world discards us so easily if we die. I believe that every human life has a value regardless of your ability or disability, no one deserves to die. My goal is to ensure that no one dies of bedsores or due to their family’s compulsions,” she adds.

When the world closed the door on Preethi, she decided to create change and opportunities. She is now pursuing her PhD from IIT Madras.

If you wish to donate to Soulfree, you can do it here. 

Edited by Padmashree Pande.


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