Who is this useful for?
All stakeholders including people with deafblindness, parents, teachers, policy makers, educators and general community
A Parent’s Journey: From Uncertainty to Leadership
My name is Om Prakash Baweja. I am from Rajasthan, India and am the father of a child with deafblindness. I am part of a parent-led organization supporting children with multiple disabilities.
When my son was young, we believed he was totally blind. Later, we discovered that he also had hearing impairment and additional developmental challenges. At that time, we did not even know what “deafblindness” meant. We tried to admit him to a well-known blind school, but they refused, saying he would not be able to cope because of his multiple disabilities. Other organizations also denied admission. It was a very difficult and confusing time for our family.
In 1999, Sense International India identified four children, including my son, who had not been admitted anywhere. Their team visited our home and introduced us to the concept of deafblindness. This was the first time we felt understood. With their support, a small deafblind project began. Over the years, we saw real progress in our children.
When local partner organisation support ended in 2005, parents like us decided not to give up. We registered our own organization, Nav Chetna Society, and requested Sense International India to help train one of our educators. With their support, our educator received professional training, and we restarted services. Today, we support many more children through center-based and community-based programs. As parents, we have become educators and leaders. This transformation was possible because of awareness, training, and continuous support.
Discovering the Global Deafblindness Resource Hub
I first learned about the Global Deafblindness Resource Hub during the National Conclave. Initially, it was new to us and we did not fully understand how to use it. Whilst we don’t access it everyday whenever we visit, we find valuable information.
The Hub is a powerful digital platform. It connects deafblind individuals, families, educators, and organizations across the world. For us as parents, we have found the resources on communication strategies, accessibility and assistive technology and early intervention support.
Previously, we did not know much about assistive devices or how deafblind individuals could use technology independently. Through the Hub, we learned about available devices and practical ways to use them. It feels as though an expert is always guiding us. I do not feel alone while searching for solutions — I can find answers directly on the Hub.
Impact on Our Work
When we meet new families, the first questions are always about communication and accessibility. The Hub helps us guide them with confidence. We also share the link with other organizations, and they appreciate it as a rich and reliable resource.
The availability of content in multiple languages, including Hindi, is a major strength. Being able to search in my own language makes understanding much easier.
A Message to Other Parents
To other parents, I would say: do not feel alone. There is support available. The Global Deafblindness Resource Hub is a valuable platform where you can learn about communication, devices, accessibility, and connect with the larger deafblind community.
Over the past 25 years, I have seen tremendous change — from a time when people did not even know about deafblindness to today, where there are national meetings with hundreds of participants. Awareness has grown, and platforms like the Global Deafblindness Resource Hub are playing an important role.
For our family and our organization, knowledge has created confidence. And confidence has created change.
