About the Author: Ms Prarthana Prateek Kaul is the Co-Founder of GiftAbled, an award winning social enterprise that strives to create an ecosystem of like-minded individuals to collectively build an inclusive society.
In addition to being a wonderful human being, Ms Kaul is a cause marketer, a motivational trainer, an influencer, a consultant in the space of disability inclusion to many multinational organizations and has supported the livelihood of 1000’s of People with Disability and the underprivileged across India through Supply Chain Diversity and other projects.
Wow! I never knew that there was a “World NGO Day” that recognizes the inspirational work of NGO’s and the people behind not-for-profit organizations around the world.
I transitioned from the Corporate sector to the Social sector in June 2006, when I felt weekend volunteering wasn’t enough. I realised that if I want to bring in a real change, I needed to dirty my hands on the ground. Fortunately, my family supported me and yes, I joined iVolunteer.in, an organisation that connects volunteers to NGOs to share their time, skills and passion. During this journey, I had the opportunity to work with 100’s of Non-Profits and 1000’s of volunteers working for a spectrum of causes. As I slowly realised how Disability as a cause, is skewed to the bottom of the pyramid, I conceptualised and started GiftAbled with my life partner, Prateek, in Dec 2013. GiftAbled works to build an inclusive world where People with Disabilities find an equal opportunity in all aspects of life. As I am writing this article, hunderds of stories and innumerable learnings from my memory lane flash in front of me, and I begin to wonder if I would be able to do justice to this article. So, let me try to share a few take aways from my journey and see if I can add a relevant story from memory book.
Learning#1: See things from a different perspective and ‘just be there!’
It is a basic human nature and tendency to view things from one angle or perspective, on most occasion. However, while I worked with either the underprivileged children, the deaf, or with the geriatric population I learnt the below:
- Most of the times, all that people need is your time. You just need to be there to listen to them!
- It is important to broaden one’s perspective, and think like a child who isn’t restricted in their thoughts and therefore thinks from various angles.
I distinctly remember one Ajji (grandma) requesting me, “Prarthana, can you send a volunteer every week, for 10 minutes?”. Curiously I enquired, “Why Ajji (grandma)?”. Her response, “I have 6 children, all of whom are well to do and all staying in Bangalore.. Yet, here I am, in an Old Age home. I want to still believe that someone is there to hear or just read the newspaper to me for 5 minutes”.
Just think of the impact that your 5 minutes could bring in to someone!
Rasathi, an 8-year old sweetheart then, was sharing a story with me one day. She began with, “Ajji (grandma) makes yummy Jalebi and chakkuli (common snack items made in South India)”. She then asked me “Why do you think I am saying Jalebi and Chakkuli?”; before I could answer, she said “because these are my favourite dishes na?”. She then continued with her story and concluded by sharing that a crow had finally taken away all her Jalebi and Chakkuli.
I still remember this decade old incident where I felt helpless listening to both of them. Yet, I realised that they had just shared their life story, and that although I loved listening to this, I couldn’t fully get it because I was blessed and not in their shoes. At the end of the day, all that Ajji and Rasathi needed was to just have someone to be there and listen to them.
Learning #2: Be patient! You cannot add days to their life but you can add life to their days. Providing care with dignity makes a world of a difference, when there is no hope for cure or a disability.
This was my learning while working with cancer patients and people with severe disabilities. While fulfilling the wishes of those children suffering from life threatening illness, I witnessed how a single wish held power, hope, magic and yes, changed lives positively.
Of the innumerable stories that were born during my interactions over the years with patients at a cancer hospice during diwali celebrations, one interaction is distinctly vivid in my memory. During one of my post-event visits to the hospice, I saw a 22-year old young patient, lying on his death bed, smiling and doing the one minute energiser I had done with them during the event we did a week ago. This image reinforced to me, the power of volunteering and how a simple activity can leave lasting impressions on someone’s last few days.
The other story is when we learnt that the final wish of a 7 year old terminal child was to have a fish in his fish pond. This child, we learnt was throwing a tantrum and refusing to have food for the past 3 days until he got “his fish”. Once we fulfilled his wish and bought him a real fish and a fish toy, he settled down and said, “Amma, I want to eat, please give me food!”. So you see, this is the power of a single action which made his last day on earth beautiful. He passed away that very same day, knowing that his final wish was fulfilled.
Learning#3: We still have a long way to go and we must work collectively to foster inclusion and coverage for everyone including caregivers.
The other interaction that remained with me, was when I met a young bubbly girl who was a Bharatanatyam dancer. I learnt that she had a fall from the 3rd floor of her building and ended up with a spinal cord injury which left her wheel chair bound. It was so tragic that she finally died due to the lack of medical support and rehabilitation. This made me realise how we are still WAY behind and how much work there is left for us to do collectively.
During my journey with the NGO sector, I have witnessed the transition of seeing parents/care takers who were and are scared of what would happen to their child after their time, to now the very same parents/caregivers proudly saying that today, because of the vocational training their disabled child is now the bread winner in the family. This leads to a thought of how caregivers are an invisible army of people providing a vital service, whose own needs are often routinely ignored.
I do sessions for volunteers, beneficiaries, caregivers and Non Profits. Each time I remind them of how each one of them would be a role model to someone. Volunteers are role models to beneficiaries; beneficiaries are the role models to several other people out there; the Care givers are role models to their family members; and yes, all those who work passionately in Non-profits and for a cause are role models to all everyone. That’s the role we play and I am proud of each one of us for doing working sincerely, dedicatedly, passionately and most importantly Compassionately.
Today, I understand what Marie Curie said then, “One never notices what has been done; one can only see what remains to be done”
Yes! The more you do, the more you want to do… Dedicated to all the passionate Social workers around the Globe! Happy World NGO Day!
This article is a republication from the Indian Association of Palliative Care’s Newsletter: March edition, 2022.
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