On Christmas ‘eve I had a short meeting with my friend Paras, a social activist living with thalassemia, a severe blood disorder. I met Paras several years ago and recently ENGAGE worked with him to set up a web based crowdfounding campaign for him to be able to attend the World Thalassamia Conference and start some advocacy activities in Nepal . The campaign went miserably but somehow, with a bit of luck and perseverance, Paras managed to attend the summit.
Now Paras was a bit under stress and pressure, he definitely has not a easy life. Her mother is also not so healthy and Paras has to deal with a multiple of challenges on daily basis: blood transfusions, rising living cost of Kathmadu, her parents back in Tarai that also needs support.
Still Paras is a stubborn dude and that’s why we like each other: he was so determined to go to the summit that I got convinced to try my best to help him for that purpose. I mobilized my personal E-Team with my 3Ms buddies Mohan, Mike and Manendra and we set up a nice campaign. Again it did not work at all but at the end of the day Paras went to the conference.
For the new year Paras has a terrific proposition: get the All Nation Paras Thalassemic Trust on the ground. The trust is his brainchild and he is a great idea. As Paras is now doing a fantastic job with the National Thalassemia Association, he feels the “urge” to do something more challenging, something on his own. He still wants to collaborate with the Association as he is a part of it and he still wants to play a role in it but at the same time, there is dire need to try to provide relief and assistance to persons living with thalassemia outside the Valley. In this way the Trust could easily agree with the Association on a clear division of labor, with the former more focused on outreach and service delivery where persons living with thalassemia are most in need .
To me it is a great idea and an amazing example on how a person with a serious health condition, a severe ailment can play the role of BIG CITIZEN, a social activist that dares to dream to change and do something good for the society. This is a bit the same philosophy of ENGAGE: we promote a concept of volunteerism where the service users or beneficiaries can also play a role, showing how they can BE an example to our Corps members. It is not a top down approach but rather a peer to peer way to establish new friendships and relationships. For ENGAGE, volunteering and service is all about creating a more equal society. Yes volunteering, social activism is all about enabling new opportunities where people can work together and try to make the society a better place to live.
As my dear friend Mike says, we always need to work to establish partnerships. Volunteering is a platform to do that: partnerships for good.
I wish a society where people, regardless of their abilities or disabilities, are empowered to try to do something good. Paras for me is an extraordinary example of survival, tenacity and determination. He offers strength and hope because I love fighting, even when I get down and it happened quite often, I get inspiration from people like him and I bounced back.
Paras along the years has mastered the art of perseverance. He has been playing an instrumental role in the National Thalassemia Association but he wants to do more.
He has his work cut out for 2014. The Trust is already fully registered but funding are lacking, an office is not existent and so on. ENGAGE is tremendously small, we also have our own work cut out for the new year but I am ready to do my best to support Paras to make his dream come true. I am sure my E or better M-Team will be ready to help. Yes I am lucky dude to be able to count on fantastic teams of professionals who are actually my best friends. My life in Nepal without them would not be the same and at ENGAGE we are lucky enough to count on them ( we also have a P, Pragya, an amazing lady from Delhi who is leading the Sharing4good project).
Inspired by Paras and with the support of my M+ P Team we can all try to do a bit of work. This is what the Volunteering inspired society is all about.
Merry Christmas and truly serene new year
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