“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.”
A person suffering from Tuberculosis (TB) not only battles the ‘Mycobacterium tuberculosis’ bacteria inside his lungs but also from the stigma attached to the disease. It weakens the patients in many different ways in their fight against the dreaded disease.
My fight with TB was also filled with stigma. I joined IIT Kharagpur for my PhD in January 2015. Two months later, in March 2015, I was diagnosed with TB. I had to take sick leave from March 2015 that eventually lasted till June 2016. Initially, I did not respond well to medication. Further tests revealed that I had multidrug-resistant TB (MDR TB). This meant that the type of TB I had was resistant to two or more of the antitubercular medication I was taking.
About a year after the intensive phase of my treatment, I felt better and applied for readmission to IIT in July 2016. A prerequisite for rejoining was that my faculty members had to verify my application. With the formalities completed, I resumed my education, but I felt that something was amiss.
My guide indicated that he did not want his work to suffer on account of my illness. I also heard from a senior colleague that my guide had said that I would spread the disease like an ‘infested animal’. I was disheartened at being subjected to this indignity by my supposed mentor.
However, my primary concern was defeating TB, so I didn’t dwell on it. Today, as I reflect on it, I realise the reasons behind the stigma were ignorance as well as fear.
Even among the educated, there are misconceptions about TB. People think all forms of TB are contagious. Others believe the patient is infectious for the entire length of the treatment. Some even believe that TB spreads through touch. This breeds the fear of contracting the illness.
As we know, people stigmatise and discriminate when they fear. I felt the impact of the stigma on two levels – in my professional life and my personal life.
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Professionally, the reluctance of my supervisor to mentor me and his discouragement affected me. I could not decide whether I should wait for the IIT authorities to tell me to leave or drop out. That decision was made for me by luck when I found out that my CSIR grant application was never processed.
This meant that I would have to pay for my education. Given the expenditure on my treatment, this was unaffordable for me. This was the final nail in the coffin. I was forced to drop out and could not go back to completing my PhD.
What I faced was not technically illegal. I was discouraged from doing my PhD, but it was still a form of stigma. The external stigma I faced led to depression and isolation.
Eventually, I realised I had to fight. The treatment for TB is difficult, requiring strict compliance and the management of side effects, and these demands resolve. I began motivating myself. I began following a proper diet and completing my treatment to ensure I could recover. I also turned to books as they transported me to other worlds and helped with my isolation. I also focused on reviving my old relationships.
Gradually, things improved. I could not proceed on my desired career path, but I am an educator now. I constantly realise that I have a role to play in shaping young minds.
Workplace stigma has tangible consequences. It affects an individual’s career, financial opportunities and their right to work with dignity. So what can we do to address this stigma?
First, we need to sensitise people by educating them about TB, and the impact stigma has on patients.
Another measure is group counselling involving the patient, the employer and the immediate supervisor. Informal versions of these sessions happen in the workplace in the context of illnesses like cancer. Why should it be any different for TB?
The goal of this session would be to ensure that the patient is in a supportive environment.
Finally, at a systemic level, there needs to be a workplace policy on stigma mitigation and a mechanism where the patients can anonymously register their concerns about stigma at the workplace.
A person’s career or job is often their calling and a provider of financial security. Workplace stigma creates a hostile work environment, affecting a person’s ability to do their job and their financial security. Financial insecurity and stigma make it harder for the patient to fight TB both in terms of means and motivation. Therefore, addressing stigma in the workplace is critical to patient well-being and recovery but also to their right to work with dignity.