For deafblind individuals in India, grappling with twin challenges of stereotypes and inaccessibility hinders true progress

What is normal, anyway? In this monthly column, Srinidhi Raghavan explores the understanding of bodies-minds and navigating spaces as disabled, chronically ill and sick people. Read more from the series here.For many of us in society, we often see disabled people as either ‘helpless’ or ‘inspirational’. For the longest time, all mentions of Helen Keller that I have heard have been through the lens of inspiration i.e. "She has accomplished so much despite being deafblind." Only recently, I uncovered a series of tweets, TikTok videos and posts which called her a "fraud/fake news". Every one of those posts assumed that it was impossible for a deafblind person to write books, to be articulate, to learn multiple languages. And therefore, she was not real or worse, people around her did the work and she took the credit.These assumptions are definitely not new for disabled people. Doubting their capabilities or being surprised by them is almost the norm. India-based disability rights activist, Zamir Dhale, who is deafblind, was deboarded from a flight while he was heading to Geneva to advocate for rights of people with disabilities; only because the airline was unsure that he would be able to manage the trip by himself.These assumptions about deafblind people are rooted in our severe lack of knowledge of how they live, experience and engage with the world. Haben Girma, a lawyer and disability rights advocate, says in her book, Haben: The Deafblind Woman Who Conquered Harvard Law: “By identifying as Deafblind, I'm telling the world that I'm part of a community where knowledge gained through touch is equal in value to knowledge gained through sight, sound, or other means.”According to a study done by Sense International India, an NGO working to support deafblind people, there are more than 5,00,000 people who live with Deafblindness in India. Deafblind individuals who are across a spectrum of deafness and blindness access the world through different ways including and not limited to tactile sign language, braille keyboards, text messaging and even screen readers. But many of their paths and lived experiences are steeped in inaccessibility and hurdles — worsening in the times of COVID-19.Ishan Chakraborty, a queer cis-man, speaks about his journey of navigating these inaccessibilities during the pandemic. As an Assistant Professor in Jadavpur University, he said that his entire world pivoted to digital and remote during the pandemic; however for him as a deafblind person, touch and presence are very important. “The teaching itself was drastically affected in this time. Earlier the college would assign me an assistant to sit beside me as a reader to help grade papers, conduct my research for teaching and support me to build my classes and my curriculum. But in the pandemic all this was taken away from me. I was also left to navigate a system of Google Meet, Zoom without any additional support,” he shared.According to him many of his fellow teachers were using multiple aids like images, videos to support their teaching. But for him this was not possible. He said, “The remote system has increased my dependence on others but also made some tasks impossible. Earlier in the classroom, I had contact with my students and this helped me in my teaching. Now that is not possible since most of the students on video platforms remain muted through the class. So, the entire process has been very distant and disconnected. Conducting research for my PhD with support of readers, at a physical library have all been not doable. There is an increased burden of time and effort, like contacting a reader who can read for me, find times when they are available, find time slots when the library is open to visit it and conduct research. In lockdowns, this cannot be done at all.”What happens when inaccessibility is all around? How does it affect the lives of deafblind individuals? In an interview for NewzHook, Dhale, who is the founder of Society for the Empowerment of the Deafblind, pointed out that in other countries many deafblind people are successful and independent. “Here we cannot progress because of many barriers like inaccessibility of the environment and lack of services. We constitute 0.2 to 2 percent of the population of persons with disabilities, and experience restrictions due to barriers in communication and lack of access to assistive technology.”While in conversation with me, he spoke about the specific needs of the deafblind community including the importance of physical meetings. He said, “During this pandemic, deafblind people are facing problems especially since we can’t always attend virtual events or be online - so much of that is inaccessible for us. Touch and meeting physically is important to the community. We also need a tactile sign language interpreter to help us communicate easily.”Many of the problems faced by the community stem from lack of awareness around deafblind people, their lived experiences, their access needs. Ishan shares how little is known around making the education system accessible to teachers with disabilities. He asks, “Who is the education system being designed for? Who is accounted for in the system and who remains invisible? The needs of disabled teachers are often unheard and disability remains an afterthought. So our access needs continue to be forgotten.”Haben, too, in her book raises pertinent questions around accessibility. She says, “Inaccessible websites and apps accelerate the information famine. People who have visual disabilities, dyslexia, and other print-reading disabilities face economic hardships spurred by the lack of access to job applications, health notices, government forms and educational materials. Technology has the potential to remove barriers, but developers keep designing inaccessible digital services.”These thoughts are echoed by Zamir who says even with the Rights of Persons With Disabilities legislation in India, deafblind people are not focused upon. He shared, “As the government of India doesn’t recognise Deafblindness as a separate category, our access to interpreting services and support is not implemented fully. One way to improve access for deafblind people is to provide Braille keyboards, social security and assistance.”Inclusion of people with disabilities is possible if we make accessibility our priority across different spaces and see access needs as a dynamic way of being in the world, not limited to a few checkboxes provided on a form or something ‘special’. Maybe if access was a reality, a lived experience for more and more people with varied disabilities, non-disabled people would not be surprised, or terrified, or scream ‘fake news’, or be ‘inspired’ when disabled people lived their lives, learnt new languages, wrote books, recited poetry, acted in movies and travelled alone.Srinidhi Raghavan is a writer, researcher and trainer. She works at the intersections of sexuality, gender, disability and technology. She works on programme development with Rising Flame and is the Co-Founder of The Curio-city Collective.