CHENNAI: In 2012, Swarnalatha J found herself alone in an ayurvedic hospital as her Primary Progressive Multiple Sclerosis condition had worsened after a move to Coimbatore. Away from family, interactions with other persons with disabilities across age groups punctuated the next 90-odd days. Soon, she began conducting classes, and the ward reverberated with catchy tunes during noisy games of antakshari. “It was an eyeopener and I felt I had to do something for them. They started getting positive and began looking at life from a different perspective. I called my husband (Guruprasad TS) and said we will start an NGO,” says the activist, writer, and motivational speaker.
Soon, Swarnalatha’s purpose took shape as the Swarga Foundation, a haven for disabled persons in Coimbatore, with the tagline ‘life finds a way’. As the NGO completes a decade, it has changed the lives of over 100 million beneficiaries. As the name — an amalgamation of Swarnalatha, Guru, and her kids, Gagan and Gaana — suggests, love and togetherness are the organisations’s guiding principles. Over the years, Swarnalatha has amassed 40 awards including the CavinKare Ability Award for Eminence, and the Seiyyal Puyal Award by Aval Vikatan. Recently, on the International Day of Persons with Disabilities (December 3), she added one more award to her shelf: the Sarvshreshth Divyangjan Award. On receiving the award from President Droupadi Murmu at Vigyan Bhawan in New Delhi, she recalls, “I felt that there were two powerful women on stage, that women can transform the universe and I had much to achieve. As the saying goes with great power comes great responsibility, I felt I should do more.”
Sowing seeds of Swarga
Let’s rewind. One morning in October 2009, Swarnalatha woke up feeling feverish and sluggish in her hometown, Bengaluru. “I took a paracetamol and went about my day but by evening I was 100% disabled. Doctors could not comprehend (what was happening) and I was referred to one of the biggest hospitals in Bangalore. Not one doctor dared to come and tell me what the diagnosis was.” After glancing through the reports, she scoured the Internet for threads and information on Multiple Sclerosis. “One could die of a heart attack looking at that information. If one doctor had taken that courage and told me it is okay, ‘we are there with you and we will sail through this difficulty together’, I think my life would not have been so difficult,” she adds.
Forced to resign from her post at a German car company, Swarnalatha grappled with learning to navigate her diagnosis and faced several hurdles. “There were too many questions — whether it was curable or not, whether the condition was going to be like this forever or how will I take care of my family. Ours was a love marriage, we didn’t have moral support.” With physiotherapy and grit, she regained 60% of her mobility but MS forced her to confront depression, rejection, helplessness, and anger. “It helped me look at things I had ignored when I was not disabled so it allowed me to work in all these fields and make a difference,” she says. With Swarga, she started a free clinic Sowkhya, and Sarathi, the country’s first free wheelchairfriendly ambulance service which has traversed from Siliguri in the northeast to Thiruvananthapuram down south. She launched projects such as the ‘I’m Special Calendar’, released every year, with the 2024 theme being ‘Beyond Valour’ featuring disabled officers and Army personnel. Apart from health and breaking stereotypes, the foundation also focuses on aiding senior citizens in government homes with their ‘Twinkle in a Wrinkle’ project and training para-athletes with ‘Lakshya’.
Design and disability
In India, over 2.68 crore persons are ‘disabled’, according to the government survey. In 2009, the activist says, over 2.5 lakh persons in India were diagnosed with MS, and the numbers are bound to rise. “People with disabilities are denied education, employment, relationships, marriage, and family. The government gives a pension of `1,000-`2,500 but do you think that is sufficient? One caregiver will cost from `25-`30,000, and diapers, and medicine, just to maintain a decent life,” she says. The government must focus on creating disabled-friendly cities and making public healthcare more accessible. “Delhi, Bangalore, and Chennai are not as disabled-friendly as Coimbatore, and I take pride in saying the Swarga Foundation is responsible to a major extent for this change.”
Swarga has installed disability-friendly washrooms in the Coimbatore railway station, set up ramps in 10 government schools, and made the complaint filing process in 25 police establishments accessible. “We have believed in action more than talking. You can’t keep complaining to bureaucrats, we believe in getting into the system. For instance, Coimbatore is a Smart City and we were involved from the planning phase,” she says. Now, Swarnalatha and the organisation’s members are back at the drawing board, with plans to set up an in-patient rehabilitation centre. “We have already acquired the space and are looking for funding to build a hospital with integrated, holistic, comprehensive rehabilitation,” she signs off.