By Sonia Gervasis, with inputs from Shrutilata Singh
You must have heard about Hellen Keller, but have you ever wondered if our country also has people like her? Well, the answer is yes! I, Shrutilata Singh, am also a person with deafblindness. I have progressive vision and hearing loss that makes it difficult for me to communicate as other people do. I cannot hear when you speak. I cannot see when you use gesture from a distance, but in every other way, I am just like you all.
When 95% of our communication is through these two senses, communication, access to information, and mobility become a challenge if you lose them. Still, I have managed to complete my studies and did a diploma in physiotherapy after graduating as an English Major. I am now part of Sense India team, as an advocacy officer engaged in services for other people with deafblindness in our country.
In today’s world, data is very important, and everyone wants their own identity. As an advocate of deafblind rights, I would like to share my views on the need for inclusion of persons with deafblindness in the SDGs mandate. My views echo with the strong message Asha, a young girl with deafblindness from my country, gave to the world through her video at the UN World Data Forum recently.
According to the World Bank, almost one billion people, or 15% of the world’s population, experience some form of disability. The disability prevalence is higher in developing countries. It is a proven fact that persons with disabilities are more prone to adverse socioeconomic outcomes such as less education, poorer health outcomes, lower levels of employment, and higher poverty rates as compared to persons without disabilities.
In a world that depends on data every single day, the lack of it can leave populations invisible to the extent of being non-existent in the world. The latter is more real and true for people with deafblindness. Deafblindness is an isolating disability. It is a combination of hearing and vision loss with varying degrees of complexity.
For people with a unique disability like deafblindness, the lack of data can be detrimental. Out of the approximate 2% of the Indian population with a disability, there is no official data on the number of people with deafblindness in the country. Yet, based on the work we do in 23 states, we estimate that there are about 500,000 people with deafblindness. Sense International India, an NGO based in India, has been working with people with deafblindness for the past two decades. With no official numbers, it becomes difficult to reach out to people with deafblindness.
In 2017, a UN Sustainable Development Goals Report stated that the absence of sound disaggregated data for persons with disabilities worsens vulnerabilities and limits the ability of the international community to fully understand the discrimination and exclusion faced by people with disabilities. The conversation on data is important when we work on Sustainable Development Goals (SDGs).
After setting up the SDGs, barely half of the countries were able to provide data for the work done or analyzing trends. Even the countries that did provide data, it was a small amount. Disaggregated data can improve planning and budgeting for reasonable accommodation to realize the human rights of people with disabilities.
We know from existing evidence that disability data has the potential to drive improvements, allowing the monitoring and evaluation so essential to the success of the 2030 agenda. The pandemic has pushed us back in achieving our SDG goals, but it has given us time to think and ponder on what data means to us and how it can affect people with deafblindness.
Understanding the need of data, the United Nations Statistics Division built a network of data leaders from across the world working in systems like civil society, academics, the business community and more that would benefit from it and United Nations World Data Forum (UNWDF) was made. This year, UNWDF put out six themes for submissions.
Out of the six was ‘Leaving No One Behind’. This was to ensure that no voice was left unheard or invisible. So, a video contest was introduced, and videos from ten countries were shortlisted, out of which one was from India. It was a short appeal made by a 16-year-old girl named Asha Patwal, who has deafblindness.
Asha signed, “I am invisible in the census due to my disability (Deafblindness).” Asha won the contest. She was one of the three winners of the contest. Her video is going to be featured in the United Nations World Data Forum in Switzerland in October 2021. In my opinion, this is a big win. This will not only put the focus on people like Asha but also on the gravity data, and Census 2021 have in the lives of people with deafblindness in India.
The Indian Census opens doors of opportunities for the people recorded in them. The 2011 Census was by far the biggest Census done in the history of mankind. The decennial data is the only reliable source of demography in India. The categories mentioned are economic strata, sex ratio, literacy rates, mortality, fertility, migration, language, religion, disability, and many more. For disability, in particular, being counted, recorded—seen in the Census makes funds accessible for people with disabilities. Policies and schemes for them will be made based on the Census data.
As the only reliable data, it is extremely important for deafblind people to be counted in it. Asha said, “I believe that Better Data can impact our lives and change the world for the better. Acknowledging the presence of people with deafblindness through this forum will help raise awareness and ensure their identification.” Hence, Asha also did not win for herself; it’s a win for every person with deafblindness and for Sense International India that has worked with people with deafblindness all along and advocated for their rights.
Census is the only way to measure SDGs in our country, and including deafblindness in the Census 2021 will not only give us official numbers of people with deafblindness but also help us reach out to them. Census should count us! Just like myself and Asha, there are many other people with deafblindness in our country and her win has motivated many other young people with deafblindness to ask for their identification.
This has been a big win, but there is more to be done and we won’t stop till it is achieved!