Confronting personal challenges posed by MS, Swarnalatha of Swarga Foundation leads initiatives fostering disability inclusivity, positively influencing over 100 million lives.
Swarnalatha J was diagnosed with Multiple Sclerosis in 2009. She was conferred with the National Award on 3 December. (Twitter - @rashtrapatibhvn)
Earlier this November, it was a regular day at Swarnalatha J’s and TS Guruprasad’s household. After their morning routine with their children Gaana, Gagan, and their dog Marble, the Coimbatore-based duo was ready to head to their office — Swarga Foundation.
However, their routine weekday was interrupted by a phone call. It was a call from the Department of Empowerment of Persons with Disabilities, Union Ministry of Social Justice & Empowerment. Swarnalatha had been selected for the annual National Awards for the Empowerment of Persons with Disabilities.
“I cried for 10 minutes continuously. Every adversity that came my way seemed insignificant to me at that moment. I felt like my life had come full circle!” recalls Swarnalatha, who was selected from 690 nominations from across India.
On 3 December 2023, coinciding with the International Day of Persons with Disabilities, she received the Sarvshresth Divyangjan Award from the President of India, Droupadi Murmu, at Vigyan Bhawan in New Delhi.
As Swarnalatha was gently wheeled onto the stage, a wave of emotions engulfed her.
“Simply being there — not as a recipient but merely as a member of the audience — was overwhelming. The event was meticulously organised. Witnessing the President, I was in awe. The authority she wielded on stage and her commanding presence were immensely powerful. In that moment, I aspired to command that level of respect one day. It was a truly inspiring experience,” she fondly reminisces.
However, having received nearly 40 awards to date, Swarnalatha found herself longing for her husband’s presence on stage.
“For every award, he stood by me on that stage. As this was a National award, only the recipient was allowed on stage. We are like Ardhanarishwara. My accolades and recognition extend beyond my individual efforts – Guru, my children, the members of Swarga Foundation, and those who have been part of my journey are equally deserving,” she expresses, filled with gratitude.
When Swarnalatha mentions that her life has come full circle, one might question what she means. Reflecting on a day much like the present, 15 years ago, another unforeseen event reshaped Swarnalatha’s life.
Swarnalatha wears many hats — she’s a disability rights activist, singer, beauty pageant winner, and motivational speaker. (Instagram)
In October 2009, on the eve of her wedding anniversary, the disability rights activist started the day feeling perfectly ordinary. However, it swiftly took a turn as a fever set in, progressing throughout the day until. By evening, she found herself paralysed from the neck down.
It was then that she received the diagnosis of Primary Progressive Multiple Sclerosis (MS).
However, this wasn’t Swarnalatha’s first encounter with adversity. As the second of four daughters in a lower-middle-class family, her life has consistently been marked by hardships.
From facing mistreatment within her household due to her gender, enduring an accident, surviving sexual abuse by her uncle and then being victim-shamed by her own parents, discontinuing her education to support her other siblings, losing her father to suicide, and being disowned by her family for marrying someone against their will, Swarnalatha’s life has unfolded as a series of challenging segments, compelling her to cultivate resilience in the face of taxing trials.
Today, as a motivational speaker, Swarnalatha ensures she shares her story, hoping that someone can draw strength from her journey and experiences.
“It’s not the most comfortable thing to share — your personal story. But in my life, there are stories that different people can resonate with. If sharing my story, placing myself in a vulnerable situation, helps someone and offers them strength and hope, then why not?” shares the holder of the Asia Book of Records.
Swarnalatha with her family. (Instagram)
Throughout our 60-minute conversation, Swarnalatha not only sounds content but also expresses immense gratitude toward her family.
“How can I not? They have dedicated their lives to taking care of me,” she says.
Her teenage children, Gagan and Gaana, have been the pillars of support, along with her husband Guruprasad, whom she refers to as “The love of her life.”
“My children appreciate diversity. They have witnessed me, my father-in-law diagnosed with Parkinson’s, and my late mother-in-law in a coma. My children have encountered people with all sorts of disabilities. They have become self-sufficient and open to life. It’s not easy to go through all this, and for children to mature this early. So, as a family through our Swarga Foundation, we offer help to people and families that need support. We don’t want anyone going through what we did,” she shares.
Swarga Foundation oversees more than 10 projects, each providing various forms of support, including counselling, medical reimbursements, enhancing accessibility in public spaces, rehabilitation, conducting free wellness camps for the underprivileged, awareness programmes, and offering travel solutions specifically designed for senior citizens and individuals with mobility impairments through their Sarathi initiative.
I’m Special Calendar 2024, featuring soldiers and officers from the Armed Forces who became differently-abled in the line of duty. (Supplied)
“We believe in action. Therefore, the foundation is actively engaged in the implementation and execution of several projects, such as making the Coimbatore City’s Police Commissioner’s office wheelchair accessible. Similarly, the Coimbatore Railway Station has been equipped with disability-friendly elevators. The disability-friendly toilets at the stations have also undergone renovation,” she shares.
They have also transformed 10 government schools into wheelchair-friendly environments through the provision of wheelchair-accessible toilets and ramps.
The foundation also produces special calendars annually, showcasing PwDs from various fields. This year, the foundation has introduced the I’m Special Calendar 2024, featuring soldiers and officers from the Armed Forces who became differently-abled in the line of duty.
“Often, people casually acknowledge the armed forces for protecting us in the line of duty without truly contemplating the sacrifices they make. But we decided to take a step forward and connect with these individuals. We visited the Paraplegic Rehabilitation Centre in Khadki, Pune. It was an emotional moment for them – to know that people care about them,” says the singer and beauty pageant winner.
The Sowkhya Rehabilitation Centre, managed by the foundation, currently operates as an outpatient facility, attracting people from Bengaluru, Mumbai, neighbouring taluks, towns, and cities.
Lacking an inpatient facility, the centre recognises that rehabilitation is a lengthy process requiring individuals to stay and undergo treatment.
The vision is to establish a comprehensive holistic rehab centre offering various therapies, including physiotherapy, occupational therapy, ayurveda, and others, acknowledging that a singular treatment may not be effective for everyone.
The foundation has acquired and secured the land, eagerly anticipating individuals to join and support this project.
Swarnalatha emphasises, “That’s one of the reasons why I am alive. That’s the purpose of my life,” despite currently facing a disability of 90 percent.
Swarnalatha’s passion for singing is apparent, and she frequently engages in impromptu performances with her guitarist, music-loving son Gagan, and her singer-dancer daughter Gaana.
“My husband prefers being in the audience and cheers us on. It has become our family ritual!” she laughs wholeheartedly. Even their furry family member, Marble, a rescue pet, eagerly joins in, dancing and performing along while nibbling away.
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At home, Swarnalatha enjoys focusing on one thing at a time, confessing that multitasking is not her preference. She says, “I need my focus to be on one thing. I cannot keep multiple tabs open — literally and figuratively. So, I concentrate on one thing and move on to the next. But my hobbies include watching soaps. I have a love for thrillers and comedy shows. I am currently watching The Office!.”
Reflecting on the chapters of her life, we inquire about the title of her potential autobiography. After a brief pause, she confidently shares, “I’d call it I am not just special. I am a limited edition or maybe Wheel-Heal-Zeal project!” The idea of writing a book has crossed her mind, yet she feels it lacks a proper ending.
“For me, a perfect ending would be being able to walk again. I feel happy knowing that my talks reach and motivate many. But the thought of walking means more than just a personal achievement; it gives hope to many, reigniting their belief in themselves. The journey is hard, but the lasting hope that one day we will take that step should never fade,” she stresses.
Whether she walks or not is not the primary concern. However, she won’t carry guilt or regret for not trying, she says.
“At this point, I am content and at peace. Whatever life brings my way is a welcome bonus. While walking is a cherished aspiration, what matters most is the journey of progress — letting go, forgiving if not forgetting, and embracing life’s continuous evolution,” she shares.
She concludes, “While I may not stand up physically, I will always stand up for myself and for those who need support.”
To follow Swarnalatha’s journey, visit Instagram @jswarnalatha
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