My life as a person with deafblindness. – Guest Column by Zamir Dhale, Founder, SEDB

Our guest columnist Zamir Dhale is the founder of the Society for the Empowerment of the Deafblind, India. Zanir talks about how the exclusion of people with deafblindness from the Census affects their access to education and training as well as leading a life of independence.

I live alone in a rented flat. I manage my home – cooking and cleaning independently. I work with my computer to write letters and reports, and handle the communications needed in running the Society for the Empowerment of the Deafblind (SEDB).

The SEDB is a formal public trust, registered with the Government of India. Before the pandemic, I used to the society office to work and meet people. This is heavily reduced now following the lockdown.

Creating this self-help group and registering it as a formal society was a step needed in India. We have a handful of public service enterprises working to provide basic education to children, and counselling for families with deafblind persons, but their scope is too limited to strengthen the ability of adults to work and live independently.

I have worked with two of the better known such enterprises – Helen Keller Institute for the Deaf and Deafblind (HKIDB), and Sense International India (SII) in the past. I had many opportunities to travel and see people and organisations around the world. I wanted the world to see that deafblind people in India are as capable as those anywhere else. But we need opportunities to learn and for our communities to respect our capacity.

Deafblind people in India marginalised

Deafblind people often came to me asking me to use my influence to ensure that they could live and work independently In January 2020, we, my brother Akhtar, and friend Pradip Sinha, organised the first national conference of the deafblind in India. We held a survey and found that far too many deafblind persons are seriously dependent for basic needs of communication. They are not able to work and earn on their own for lack of support and training.

I set out on my own to try and make a difference. Pradip, a classmate and friend, supports me in this. He is deafblind too and lives independently.

My classmates and I got a head-start when we were enrolled in HKIDDB as children. The founder Behroiz Vacha was such an exceptional person. She constantly challenged me, and I hope that in my work with others, I also teach them to have high expectations, be independent, productive and give back to the community.

I have interacted with many officials to push for formal recognition for the deafblind community. I have started specific interventions in education and training as well. However, the Census does not query households on specific information about deafblindness and deafblind persons. Without such data, it is proving very difficult to have our needs met with. In school, for example, there is no formal curriculum that ensures we have access to essential skills such as technology, and tactile Sign Language. Without this, young deafblind persons are excluded from education and training. This in turn excludes us from living and earning independently.

When we are children, it is the people around us who decide our path. I started losing vision when I was little. It was not possible to learn at the deaf school anymore. Everyone was sad, depressed, and anxious but none of this helped me learn! Instead of just being sad or trying to fix me, it was my granduncle who searched for a solution. He felt I should study further, as I was a quick learner.

Empowering eafblind adults

As children, we are in the hands of the community which makes decisions for us. As an adult, I want to change this. We don’t need pity. We don’t need to be fixed. We need opportunities to learn, and to be independent.

My brother and I were lucky to learn in a school that taught us sign language as well as how to read and write. Many children are not so lucky. If the parents don’t learn to sign, and don’t know how to explain things to their children, how will they learn? We partner with deaf groups around the country to help us find and reach more people who are deafblind and their families so we can help them learn the skills they need, and to connect with role models.

While I can travel alone, I often find it is people employed to assist who create barriers where none need to be. This is because they have never been taught to appreciate the capabilities of people.

SEDB has planned for training of a group of people we call Access Providers. These could be family members, from the community around or the deaf community in specific. They will learn first to appreciate the importance of providing access, not help or kindness. They will learn skills like orientation, description, etc to enable more deafblind adults to participate in community life.

Give us knowledge and skills to be independent. In today’s world, where digital communication is becoming an entry level necessity. When I found that blind people could use a computer, I decided to learn too and I am so glad I did! This is our lifeline, allowing us to work, to access information, to learn, and during this pandemic, this is we all stay in touch.

Call out to policy makers

To all the policy makers I want to say – include us in decisions. Decisions like what should be taught in schools, the access standards for technology and public spaces, to name a few. Can you imagine my world? How could you know what is best for me? When our country makes these decisions, we MUST be part of the discussions.

When the deafblind are not even recognised as a distinct group of people with specific needs we are left with whatever is developed for the blind, such as Braille. Braille and sign language are wonderful tools with many useful features, but neither of them works across the bridge to the digital world.

To all teachers, parents, and policy makers, I want to ask you – How many deafblind people in India have started organisations? How many work in good companies and support their families? How many travel alone, live alone, and manage their finances alone? Today as an adult, I want to fight for all deafblind people in India and to reach out across Asia to say – Yes, you too can!

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