For most of us, when we are out of cash, getting money out of an ATM is a piece of cake. All we do is walk to the nearest ATM, key in the passwords and voila, we have cash in our hands. Now, imagine if you were to do the same while in a wheelchair. ATM’s often have steps and not ramps and even if someone lifted you up and took you to the machine, the ATM machine is designed and fixed in a manner that anyone in a wheelchair would find it difficult to access the keypad.
The same would be true if you were to use public transport or for that matter try and access most public spaces. It took Nirmala Kewlani a PIL (Public-Interest Litigation) against the BEST (Brihanmumbai Electric Supply & Transport), Mumbai, for non-implementation of Person with Disability Act (PDA) to finally make public transport disabled-friendly. The result was 30 buses for the disabled plying on Mumbai roads.
Nirmala Kewlani or Neenu, as she likes to be called, has never let her wheelchair stop her from doing what she wanted to do. Be it writing, public speaking, marathon running, working in a corporate environment, starting up to travelling, and actively working for awareness for the disabled or even moving down a ramp.
A beautiful childhood
A polio dose, when she was 9 months old, led to adverse consequences and left both her upper and lower limbs non functional. A couple of years later due to the weakness of muscles she had ‘scoliosis’ or curvature of the spine. This also affected her posture, lung capacity and led to weakening of the respiratory muscle.
Life was tough but Neenu was living in a joint family that was not only big but also supportive. Living as they were on the fourth floor, she was carried up to the house by her father.
When the time came to go to school, a reputed convent refused the allowance/ facility to use the elevator to go up to the classrooms saying it was meant for school staff. Disgusted, her father reluctantly admitted her into a nearby school called Saraswati Mandir High School. For Neenu this place turned out to be heaven sent. Here, she received the much needed support from the entire faculty, staff, and principal and all her classmates who still remain her friends for life.
“I was never made to feel different or felt being left out.”
Though she could not participate in sports, dance, drama or school trips, her teachers encouraged her to take part in singing and other activities like drawing and reading. “I played lots of indoor games and was a voracious reader. My father subscribed to all the comics I liked.” Being surrounded by friends in school and cousin’s at home meant a great childhood. Also her parents never restricted her movements. They took her to the movies, regularly carrying her up and down their house and the few floors of the theatre since most theatres did not have lifts back then.
Earning a livelihood
As she grew older things started getting tougher for Neenu. “Going to college was impossible since I was almost 15-16 years old then. Carrying me was no longer possible. I managed to complete my graduation through distance education from Mumbai. It was quite challenging to give my college exams every year at the Centre allotted by the University.”
While in college she gave tuitions, and worked part time in a family-run export firm dealing in costume jewelry. After she graduated, she floated her own export firm and supplied jewelry to big brand stores. But to keep up with trends she needed to travel and put up exhibitions. As that was not so easy she had to shut shop.
As a teenager there were times when she would get frustrated and lose her cool about her condition. “Over the years I have learnt to calm down and look at the circumstances through a different lens. I am blessed with wonderful friends and mentors who support me and help me come out of my lows pretty fast. I go for movies, plays, concerts, and recently did first level of Improv too. It was completely a different experience for me. I am also into public speaking.”
After closing her venture she dabbled in tele marketing for three years, did a short course in voice-overs and knocked the doors of production houses for work. “The attitudinal block of being disabled stopped people from giving me work. They saw my wheelchair and not my ability of lending my voice. In 1999 I joined ADAPT (Able Disabled All People Together) which was a turning point in my life.”
She earnestly began working for the rights and entitlements of the disabled since 2000. Through ADAPT she was hired by a leading consulting firm in India where she worked in the HR department for four years.
Finding my footing here in this corporate world was very challenging. I was raw. I was used to lot of support around me, at home and ADAPT, unlike the corporate world where one has to be totally independent. I was lucky to be among a great team. My seniors were understanding and supportive. I had to work hard to prove myself and I did well in certain areas of the responsibilities entrusted upon me. I was the only person on wheelchair in my entire firm across India. I was given equal opportunity and respect. I worked for four years, which polished me and disciplined me. It also changed my personality and gave me lot of confidence.
In 2008 she joined her family business of Offset Printing Press where she helps with administration, accounts, follow up with clients, banking and family investments. But her work with ADAPT continues.
“I learnt how our power of mind and fighting spirit could turn around the whole situation.”
In 2012 Neenu was hospitalized. The doctors told her that she would need to be continuously on oxygen all her life and need a BiPAP machine. “This was the most terrifying moment for me and my parents. I was horrified to imagine lugging the oxygen machine everywhere along with me. “
But this fighter did not give up. “My leaders from my Buddhism practice group, chanted everyday in the hospital. They pushed me to fight this out and to challenge the doctor’s diagnosis. My physio worked on my lungs rigorously. We would exercise day in and day out non-stop everyday. I was pretty charged and chanted everyday with complete faith. The outcome being that where I was told to use it for rest of my life, I came out of it within a month.”
What’s more, Neenu has participated in the Mumbai marathon since the last five years.
Increasing awareness about disability
The society should change their attitude, accept and respect disabled as equal. People with disability are a part of our society and they don’t need sympathy or pity. They need equal opportunity and respect for their views, trust them; give them an opportunity to prove themselves. Accept them; include them in the mainstream of life.
Neenu is a member of Nina Foundaton, Access for all Social Foundation, and Sukirti Foundation (Chennai). She has lent her voice as a dubbing artist for CD presentations and documentaries. She has received awards and recognition for her outstanding achievements in the disability sector for the past 12 years. She has managed to get confirmation from HPCL and Indian Oil to build one disabled friendly toilet each in their new projects on major highways across the country.
She adds, “I have convinced and sensitized about the importance of access to the Essel Group, Adlabs, The Hiranandani’s, Evershine Builders, Indian Association of Amusement Parks and Industries, who have incorporated access features in their upcoming projects and have pledged to do so in all their future projects.”
According to her, people need to be sensitized towards the needs of the disabled.
All the public places and transport should be made accessible. The laws should be strictly followed and those who violate the laws should be penalized. The policies have to be implemented forcefully by the government. They have to put pressure on architects, builders and other developers who are building new projects. Citizens should raise awareness around them and get the authorities to modify their buildings to make them disabled friendly.
A very special woman
In 2013 Neenu participated in the first ever Ms. Wheelchair India Beauty Pageant.
Thanks to support from her friends, despite her initial apprehension, she sent in her entry. “If we love what we see in the mirror then the world loves us too. The strength and belief within us reflects through our personas.”
Not only did she go onto win the title, it was an enriching experience meeting other co contestants from different states and cities. “Having won the title, its now my responsibility to change the perception of our society towards women with disability.”
Another feather in Neenu’s already crowded cap is travelling 19000 kilometres in 84 days around the country as part of Beyond Barriers- Incredible India Tour project on promoting tourism for disabled.
“When you have the will and conviction from within nothing can stop you from achieving your success,” she says.
Her message to those in similar circumstances is, “I would advice my friends in similar circumstances that never self pity yourself, we have got this life for a purpose, we should accept our disability gracefully, have lots of faith, never give up easily, keep trying, be persistent. Be determined and work hard to make your dreams come true.”
She shares a quote by JD Houston- If you want something in your life you never had, you’ll have to do something, you have never done before.