What is ‘normal’? In this fortnightly 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.
According to the 2011 Census, 26.8 million people in India are disabled, constituting a 2.21 per cent of the total population. Disabled people are a diverse group across the world. In India, nearly 21 categories of disability have been established by the Rights of Persons with Disabilities Act, 2016. We are yet to do a census following the inclusion of all the new categories of disabilities. Therefore, it can be assumed that the figure of 26.8 million will increase. Despite our many efforts at making India more accessible, and pushing for understanding of disability, it is still a huge learning curve for a country as large and diverse as ours, with a sizeable rural population.
Before the lockdown began, I was in Varanasi for a meeting with disabled children and their parents. None of them knew what the disability of their child was. When the disability is hard to establish, it becomes even harder to provide access to language, opportunities, and customise the teaching to cater to the disabled child. It is very common in our country to dismiss all intellectual and psycho-social disabilities as “mad” or “mentally retarded”. Against this backdrop, it could be tough to imagine the kinds of violations disabled people face in their daily lives, which of course is made worse by the lockdown across the country.
Being restricted to their homes is not new for people with disabilities. For decades, they have reiterated that the inaccessibility of the world has forced them to remain indoors. So in many ways, the lockdown is not new. However, for those who do leave their homes, the battle to navigate society is a difficult one. For many disabled people, online delivery services and accessible mobile phone apps have improved connectivity and access to an independent daily life. But the lockdown and the ensuing restrictions change much of this.
When stories emerged from the lockdown of “remote working” and “online teaching”, several disabled people took to Twitter to talk about the number of times their accessibility requirements were denied in the past. Now, due to the pandemic, many offices and colleges have resorted to remote teaching and working to enable everyone to participate.
What kills me most is some of these same places that I applied to for jobs completely ignored me when I disclosed that I was disabled or told me that remote working was so impossible are now implementing the same remote working situations now.
— Keah Brown (@Keah_Maria) March 12, 2020
Difficulties in the lockdown
On 22 March, when the lockdown was declared, one of the first concerns the disabled community had was about accessible information. Nipun Malhotra of Nipman Foundation wrote about the lack of accessible information: “While the world is facing an information overload on the virus, the deaf are facing a severe lack of content in Indian Sign Language with the Kerala chief minister’s office being the only government agency that has released some sort of notification on it.”
Despite raising this issue and the disability legislation in India demanding accessible information, no such efforts were made. This problem intensifies for people with multiple disabilities like deaf-blindness. Many deaf-blind people communicate through tactile sign language or braille. Zamir Dhale, founder of Society for the Empowerment of the Deafblind – India, speaks about the inaccessibility in these times in his column for NewzHook: “I can still use my phone, by typing words on the screen and showing them to the other person, or by having the phone speak it out, but this is slow, and the other person needs to be very patient and willing to take the time to understand what I need to say. The fact that apps that do this for me are not widely being used, means that people are not accustomed to accepting that these electronic devices can be used by non-verbal persons like me for communication.”
A lot of disabled people depend on caregivers and support from others to function in their day-to-day lives. For instance, blind people use touch as a way to not only communicate with each other, but also as a way to interact with the world. So social distancing as a way to exist right now can be almost impossible for the community. On the other hand, for wheelchair users, movement might not be easy. So, the few hours of short notice granted before imposing the lockdown definitely made it harder for them to access groceries or stock up. Since many non-disabled people panic stocked, the disabled population would have found it even more difficult to access groceries and other essentials, like medicine.
In other cases, restrictions to move around because of the lockdown made it hard for paid carers to support disabled people. This shifts the burden of caring onto the family. It was only after this was flagged to the governments and a petition was circulated by disability rights activist, Virali Modi, that the change was made and permission provided to caregivers.
The hope to include disabled people in our conversations remains; “Nothing about us without us” is our motto after all. And to begin doing this, we need to acknowledge that our needs are different and varied. Only by listening to disabled people can we begin to meet the needs of this large community that continues to remain invisible in policy and decision-making.
Srinidhi Raghavan is a writer, researcher and trainer. She works at the intersections of sexuality, gender, disability and technology, is involved in programme development with Rising Flame and is co-founder — The Curio-city Collective.
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Updated Date: Apr 23, 2020 09:54:28 IST