This time we thought of going beyond Tricity to have Sanjana Goyal in our cover story!
Sanjana, who will be turning 56 on December 26, is someone special, because of her selfless work through the Indian Association of Muscular Dystrophy (IAMD), operating from Solan in Himachal Pradesh.
She is a recipient of the 2004 APJ Abdul Kalam National Award presented by the then President APJ Abdul Kalam, besides several other awards and acknowledgements by the Government of India.
In a candid interview with Tricity Scoop, Sanjana shares her journey which was full of struggles that she overcame by her untiring spirit of not letting disability overpower her life.
You have excelled in multiple roles – from being an entrepreneur to being a true philanthropist. Walk us through your journey of excelling in all these roles?
Ever since I have been a strong and confident child. Before I turned 10, I won the Gold Medal for Kathak dance. At the age of 12 years, I learned that my older two brothers were having muscular dystrophy. By Class 8, I stopped skipping and dancing by Class 12th. I too had Muscular Dystrophy. Walking and climbing stairs was hard, I could not get on a bus or bend down to pick something off the floor. I knew this was only going to get worse. “I must keep my dreams alive,” I thought to myself. “I can’t let this disability stop me.”
I am known in the town as a pioneer of lady’s designer wear. I ran a successful boutique business for 27 years. By now I could not stand up from a chair unless someone helped me. By God’s grace, we had a good life. We felt many others were unhappy. We must do something for them, in 1992, we started the Indian Association of Muscular Dystrophy (IAMD) with a group of social workers in town. IAMD would spread awareness about muscular dystrophy and give people hope for a better life in all the states of India by organising camps. I would write up to 10 such letters every night before falling asleep. I would also visit as many families of muscular dystrophy as possible. Seeing our hard work and selfless service, many good people joined IAMD.
Tell us more about your NGO, Indian Association for Muscular Dystrophy?
Integrated Muscular Dystrophy Rehabilitation Centre (IMDRC), which is run by the Indian Association of Muscular Dystrophy in Solan, was set up around thirty years ago. In the year 1992, a group of people affected with Muscular Dystrophy started an organization to provide relief and rehabilitation to the people afflicted with Muscular Dystrophy in India and also to create public awareness. This organization name was registered in 1995 with its headquarters at Solan, Himachal Pradesh. It is mainly run by volunteers afflicted with Muscular Dystrophy. The Indian Association of Muscular Dystrophy has established a 47 bedded Integrated Muscular Dystrophy Rehabilitation Center- “Manav Mandir” in Solan (H.P), for the rehabilitation and management training for Muscular Dystrophy afflicts and their families. IAMD is running two Physiotherapy and Counseling centers called ‘RAHAT’ at Chandigarh (from April 2010) and another one at Delhi (from February 2014). These centers are devoted to changing the lives of people with Muscular Dystrophy and their caregivers.
Today, I am available at Manav Mandir or Integrated Muscular Dystrophy Rehabilitation Centre. This is being built as a center that provides not only therapies but looks after over personality development of people affected with Muscular Dystrophy.
We recently established an indoor Court for a game named Boccia which is the only sport that can be played by a muscular Dystrophy affected person. Also, this game is a part of the Paralympics.
Now role models move around in a powered wheelchair. as administrators guiding a physiotherapist, answering a patient’s call using a headset, writing an email using voice commands, and showing a volunteer how to make a file for a government project, all at once.
What encouraged you to take this initiative for Muscular Dystrophy?
Myself and my two brothers in the family are affected with muscular dystrophy. This was the basic reason we took up this initiative.
Any myths that you would like to shackle?
There are people still at this age that go in for stem cells and ojha pandits, but no one can cure these diseases. This comes to more than one sibling in a family which is why they go to see doctors but yes, scientists are working on it and gene therapy is the only treatment that is coming up. Down the line within 5-6 years, we will see that the cure has come. Definitely, the next generation will see the cure.
Tell us about the inspiring impact that you’ve created so far?
It’s not about I but it’s about We. It’s complete teamwork. All of us have divided our duties and we all take up whatever comes in. Now we are organising three camps in one week. In each camp, more than 10 people participate and sometimes 15 and at times even 20. Whosoever participates in the camp, whether it is someone who has lost his or her physical self, they are motivated and they go completely transformed from this place.
What keeps you going despite the odds?
I would say two things in this regard and the first thing is – the patients who are coming to the centre are motivated and say that their life has changed even when there is no cure for the disease. They say, “We have all the right to laugh, we have all the right to move around, we have all the right to meet people. Even if we are in a wheelchair, it’s not the end of life and we can still lead a good life and this message is given to people, after which they feel motivated.”
Second thing, I would like to make a mention of one person. As they say, one person can change the society we experienced the same. We had started the group in 1992 and we were mostly on wheelchairs affected with muscular dystrophy and we have a group that joined us then and has been with us since then.
Mrs Uma Baldi is a real social person and if she had not joined us, the group would not have been where it is today. She helped us all through by giving her support to the centre, doing all the paperwork and she is the leader and even now she is our guiding force. All those who are associated with the organisation are contributors in terms of not just money but time and energy. The educational institutions around us have been associated with us through their volunteer support.
One message on the occasion of Universal Health Coverage Day?
Health is very important and muscular dystrophy is one condition. There are many other conditions like cancer, AIDS, and many other diseases related to neuromuscular disorders, and other incurable diseases. But I would say that a human being has a lot of control over his or her body.
Like the way we go to the temples and worship our deities by offering flowers etc, the same way we have to take care of our bodies and God lives inside our bodies and we have to keep it clean, the same way we keep our places of worship clean.
So, we have to keep cleansing the body. We must adopt nature cure treatments so that whatever junk is accumulating in our bodies washes away. Yog Pranayam is one way of cleansing the body, and we must follow this in our homes whether it’s someone who is suffering from some ailment or any healthy person.
What is Muscular Dystrophy?
Muscular Dystrophy refers to a progressive neuromuscular genetic disorder where the muscles gradually lose their strength leading to complete immobility and dependence on others for everyday activities. Muscular Dystrophy can occur at any age. Sometimes it affects more than one sibling in a family. In India, more than 4000 children are born with Muscular Dystrophy (MD) each year. Mainly, there are 9 types of MD of varying intensity.