I am deafblind and still I can live my life just like everyone else does…
Incidentally I started my advocacy journey just around the pandemic breakout same time last year, working from home. I had got the opportunity to work for Sense India through which I got to know about other people with deafblindness all around India. Sense India is reaching out to about 08000+ persons with deafblindness and multi-sensory impairment along with their families, in our country where it is estimated about 5L people live with deafblindness.
Initially I was struggling to find ways to contribute more on the job as I was working from home just like everyone else and so I was not able to access sign language support. Adding to this, I was working with just a smart phone and little technical knowledge. But this did not pull me down because I had support from team at Sense India as well as my family members. With one step at a time, I learnt to manage independently in digital mode and I realized how a little bit of guidance and support can make a big difference. That’s exactly what I am trying to bring in lives of people with deafblindness.
I have attended various workshops and webinars during this pandemic to understand different issues and concerns faced by persons with disabilities. I represented at Janta Parliament to share about plight of persons with deafblindness in India and I also got an opportunity to make a three minute intervention at UN COSP13 in December 2020. I have engaged with Common wealth Network of Children and Youth with Disability (CCYDN) to work on global recommendations for ensuring wellbeing of Children and Youth with disability during COVID19 pandemic. Recently I joined their executive committee as a regional representative from India.
While doing all this, I keep advocating at local meetings held by Sense India and its partner organizations. We have also been holding regular meetings with young adults with deafblindness and their support person. I motivate families of children with deafblindness to make more effort and ensure better support so that persons with deafblindness can give their best to the society. We have now quite a few young deafblind activists. Asha from Dehradun, won video competition in UN World Data Forum last year with her one minute video questioning lack of official data about deafblindness in our country. While Ishan, Binong, Saraswati are other persons with deafblindness who shared their views at side events during UN COSP, UNECOSOC Youth Forum and UNCSoD. Families of persons with deafblindness also engaged during these events and gave recommendation to make lives of persons with deafblindness better.
We also participated in several global campaigns including #ActForEqual, #ChoseToChallenge, Video campaign by UN Girls Education Initiative and SDG Global call for action.
Apart from all these we are also bringing positivity in lives of persons with deafblindness. We bring all of them together through our national network “Udaan” and discuss about various developments. It is this network which makes us realize there are other people like us in this world, in this country and that there is always hope. We just need to stand and fight for what we need and what we want. I firmly believe disability is more of state of mind than of body. We become victim when we believe it. If we have to fight for our rights, we have to believe in our rights.