India recorded some of the highest number of Covid cases in the second wave in the world. Recording upto 314,835 cases in 24 hours while death tolls surreptitiously catching up. Lack of hospital beds, medicines and oxygen sent the country into a spiral of panic. While the country was dealing with the horrors of the second wave, many families of people with deafblindness were still dealing with the remnants of the first wave.
Sense India held its second COSP side event on the sidelines of 14th Session of Conference of State Parties on Convention on the Rights of Persons with Disabilities with the theme ‘Building back better – Impact of Covid on Persons with Deafblindness in India’ on the 16th of June, 2021. Young adults with deafblindness and parents participated as panelists to give an inside view of how the pandemic affected them. The topics ranged from lack of accessibility, degrading mental health, depleting resources to recommendations for the government. Sessions also covered an update by Sense India team members on the current status and action required.
Binong Rongphar lives in the North-east of India in the beautiful state of Assam. When everyone shifted online, the lack of accessibility in such platforms left people with disabilities, especially with deafblindness behind. Binong who is a person with deafblindness said, “As a person with deafblindness, I could not be in front of the screen all day and I could not submit my assignments.” They relied on one to one tactile interaction and suddenly everything was in front of the screen. The daily struggles to just play catch up with the rest of the people on screen was not only physically taxing but also took a toll on his mental health. “I was infected with the Virus. I had to nurse myself back to health as my parents could not afford to miss work. I felt lonely and depressed. I know I am not the only one, there are many people with disabilities who are feeling the same with no support. So, here I am raising my voice to help others.”
As a parent of a person with deafblindness Mrs. Latha Shekar said, “The education of people with deafblindness has been severely affected. They are being left behind in the online space. A sudden shift in the teaching method has left them coping up on their own. As parents all we can do is help them not feel left out.” It has been a constant struggle for many parents with children with disabilities to keep their spirits up and look at it as a temporary adjustment. Since the pandemic has already consumed a year many parents are struggling to cope.
Saraswathi Prakash lives in a city known as ‘The Gateway to South India’ – Chennai. Saraswathi has always met adversity head on. She emphasized on the importance of family support in these tough times. “I could not repair my hearing aid in the lockdown and it became very difficult to do day to day activities. My family understood the challenges I faced and supported me. I understand that many do not have the support they need, but all I can say it to hold on till things get better because they will.”
Accessing medical support has become a terrifying thought for parents with children with deafblindness. “Covid has been really hard for my child as it has been for many children with disabilities. Many medical checkups and surgeries were postponed. It is a risk that we all took knowing the conditions outside our own homes” said Mrs. Poonam Bansal a parent of a person with deafblindness.
The panelists shared their experiences of the pandemic in the side event. They also made recommendations for the government as to how they can make the lives of people with deafblindness easier in the pandemic.
Authorities should open up an exclusive helpline for persons with disabilities to address their mental health issues.
The education curriculum should include Sign Language as a subject to make public spaces more inclusive.
Home based vaccination service should be provided for persons with disabilities.
Schools and colleges should ensure access to education for persons with disability including online initiatives.
Many people with deafblindness all across India have gone through experiences similar to our panelists. By this we understand that a vast number of people do not have resources and support because of their disability. We hope the recommendations made are considered by respective authorities so that no one is left behind.
Author Sonia Gervasis,- Officer - Communications, Sense International(India)