“Today I am 80% disabled, and all of you are 100% able-bodied. If I am doing so much despite my limitations, then what’s stopping you?”, Swarnalatha J ends her TEDx speech with this question to a spellbound audience.
The founder of Swarga Foundation – India’s first NGO to support differently-abled patients with neuromuscular disorders – Swarnalatha is also a professional singer, writer, photographer and motivational speaker.
Her indomitable spirit has overpowered her physical disability, and today her crown is bejewelled with incredible achievements while she is infusing new life to hundreds. Swarnalatha wants to dissolve the stigma and stereotypical perception about disability in the Indian society.
Not a fairytale past
Born as the second of four daughters in a lower-middle-class family in Bengaluru, Swarnalatha had a difficult upbringing primarily due to financial problems. The patriarchal mindset of her family failed to make things any easier for her.
After 10th, she enrolled to study Diploma in Computer Science. It was one fine morning during her college days when she met with a terrible accident. With a fractured jawline, she was unable to speak or eat for six long months, but the fire in her never dwindled for one minute.
Following multiple surgeries, Swarnalatha was able to become healthier soon. After completing her Diploma, fund constraints at home forbade her to pursue higher studies, and Swarnalatha started her first job at the mere age of eighteen, barely an adult.
Having lost her father at a young age, she had to shoulder a lot of family responsibilities alongside financial support.
“When I got married to the love of my life, my family disowned me as it was against their will”, she recounts the darker shades of her vibrant life.
Having overcome so many obstacles in own life, when her daughter was born in 2011, Swarnalatha was determined to gift her the life of a princess, “the way every girl deserves to be treated.”
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At her first job, she was fired over an inconsequential issue. She persevered and continued bettering her skills every single day, and soon Swarnalatha would find herself working with heavyweight corporate houses like ITC, Mitsubishi and Audi – companies most others can only dream to be a part of. Yet, the silver lining in the cloud dulled out soon, as she was compelled to resign from Audi after her diagnosis with a deadly disease.
The biggest shock
When Swarnalatha was at the doorstep of sailing into her thirties, the greatest trauma of her life shattered her to the core.
“It was October 26, 2009, just a day before my wedding anniversary. I was completely okay in the morning. Towards the afternoon I started feeling slightly feverish, so I simply took paracetamol. By the evening I was neck down paralyzed.”, she recalls in her TEDx speech how her life took a whirlwind turn within a wink.
Soon the hospital reports confirmed it to be Primary Progressive Multiple Sclerosis, a rare neurodegenerative disease, with little chances of recovery. With a gradual paralysis and malfunctioning of different body parts, today she faces difficulty in many daily activities, yet she always finds a reason to smile.
The turning point
Completely dejected and withdrawn from life, she soon found herself trapped in the dark alleys of depression.
“At one point I wanted to end my life. Looking at my husband and son, who was just two years old then, I realised they did not have any part to play in my diagnosis. That’s when I decided to give life another chance”, she shares, adding how seeing other patients in the hospital helped to bring about in her an optimistic outlook towards life.
Coming across differently-abled children and seeing their struggles, Swarnalatha felt blessed about herself. She decided not to pity herself anymore; an inner voice urged her to do something to help differently-abled individuals to whom every day poses a new struggle.
She actively started conducting puppet shows, face painting, ‘mehndi’, yoga and other skill-based workshops among patients of multiple sclerosis. Raising awareness about the disease, soon Swarnalatha became a ray of hope for everyone who is mistreated, marginalised and pitied due to their disabilities.
This paved the way for the birth of Swarga Foundation in October 2014 in Coimbatore, which she co-founded along with her husband Guruprasad T S.
As the name goes, Swarga Foundation is creating heaven for differently-abled people across India. At the outset, they provided psychological counselling to the patients and their family members to cope with the trauma.
“A couple was forcibly separated by the wife’s family when the young husband was detected with Multiple Sclerosis. We intervened and counselled the families. Today they are again happy together,” she shares.
Later, with better funds, the foundation started reimbursements for differently-abled people, helping them with monthly medication, cost of treatment, customised wheelchairs and walkers, physiotherapy and education for special children.
“Today we have made seven government schools in Coimbatore disabled-friendly, complete with wheelchair ramps and accessible toilets. We have been successful in bringing special children back to school.” Swarnalatha narrates the work they have done, sharing how Coimbatore railway station and several government offices are now disabled-friendly, thanks to their efforts.
“The very first user of Sarathi was one gentleman, a former CEO of a big corporate venture. A sudden stroke had left him completely paralysed. Sarathi enabled him to visit his mother after three years. Today he is socialising more by easily attending all family gatherings,” Swarnalatha recounts some heartwarming memories associated with Sarathi.
“I remember one ninety-year-old lady, who was bed-ridden for the past twenty years. With Sarathi, she travelled to a temple for the first time in decades. The van is also helping economically weaker patients who cannot afford an expensive disabled-friendly ambulance or vehicle,” she adds.
Besides being a dynamic social worker, Swarnalatha J continues to mesmerise audiences with her amazing singing skills. She also writes short stories and essays for many online forums. She is a professional photographer, and her photography series with multiple sclerosis patients has featured in magazines and calendars.
Swarga has published a calendar this year with award-winning Paralympics athletes. Everyone knows about Vishwanathan Anand as the five-time world champion in Chess, but Swarnalatha wishes to introduce everyone to Jennitha Anno, “five-time champion of the World Chess Championship for the Physically Disabled” – as her Wikipedia description reads.
Swarnalatha has delivered over 150 motivational lectures across India. She is also the first runner-up in the Mrs India Beauty Pageant South, giving a tough competition to professional models. She also won the title, Mrs Popularity.
Swarnalatha J continues to be a dazzling inspiration for everyone. Her undying zest for life, even after facing endless obstacles, is a marvel to witness.
She shares, “People call us various names – physically challenged, disabled, handicapped or special. I want everyone to know that we are not just special, we are limited edition.”
With the extension of the lockdown the crisis of migrant labourers and daily wagers has just grown bigger due to uncertainty and fear of future. In the migrant colonies, slums and for people in the villages hunger and desperation is building up day by day. This is high time we step up our efforts to support our people who are in dire need of food and hygiene essentials to survive the pandemic, Covid-19.
After the India-wide lockdown, a lot of jobless migrant workers are stuck in cities with hardly any resources while many started retreating back to their villages. With the loss of livelihoods, a large number of them are now struggling to support their families.
Goonj activated its pan India teams and a pan India network of partner organizations and volunteers in urban and rural India. This network, built over the last two decades, helps them learn from the ground, reach material quickly and review and adapt strategy periodically. Intensifying this network has helped Goonj reach and start work across 17produced states/UT in the last three weeks.
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Majority of the Covid-19 relief work by non profits right now is in the metros and cities but Goonj is the only non profit that is also simultaneously focusing on the people in the villages and the ones stuck on highways or somewhere.
Goonj is targeting daily wagers, migrants and other vulnerable groups, who even traditionally are left out like the disabled, sex workers, LGBTQ community.
“COVID-19 is a crisis, yes…But, it’s also an opportunity for us to build the society anew. Not ‘for’ the people…but, ‘with’ the people. And in the process, we will build ourselves too.” – Anshu Gupta, Founder-Director, Goonj.
Direct Monetary and Material Transfer
Wherever Goonj got the permission to open their centres for packing and disbursement of relief material kits, they are creating a kit consisting of 20-30 kgs material including dry rations, masks, sanitary pads and other hygiene material and reaching them to people, as per needs and as per regulations with all safety precautions. This kit will help a family survive for 30 days.
Information till 10th April 2020:
Distributed 15,100 ration kits reaching thousands of people
Reached 17,700 families
Supporting 12 community kitchen across India with 16,600kgs of ration
77,800 food packets provided to migrant laborers and daily wagers walking on the roads across the country.
Provided direct financial support to 32 organisations
In Goonj’s processing centers its trained team of women are making cloth face masks and cloth sanitary pads (MY-Pads), keeping all the precautions and with the permission and cooperation of the local authorities.
In this lock-down phase if you are facing any difficulty getting sanitary pads or you are running out of stock, here’s a detailed but very simple process of making Cloth Pads at home created by Goonj. “This is how we make Goonj MY Pads.” This is how our mothers and grandmothers turned their spare cloth into pads.
This disaster, unlike any other, is unprecedented in its scale and impact and that’s why we all must do our bit with Goonj to continue its relief work for millions of people in this still unfolding long-tailed disaster.