In May 2020, two disability rights organisations, we, Rising Flame, along with Sightsavers, came together to conduct a study and write a report titled Neglected and Forgotten– to understand the impact of the COVID crisis on women with disabilities in India. We finally published it on July 14, 2020.
It included several detailed testimonies and insights by disabled women across India themselves, pertaining to 8 key areas – access, food and essentials, health, hygiene and sanitation, social protection, employment and livelihoods, education, domestic violence, and emotional well being. There was also a set of detailed recommendations provided by the report, for policymakers, government officials, and civil society organisations.
A set of 8 separate calls were conducted to gather the testimonies that informed our research. No matter how much we tried, there was always more to discuss, more to talk about. So much so that the conversations we had with the respondents, didn’t end with the calls, but spilt over into the next couple of days. Almost every single participant asked to be put in touch with at least some of the other women they spoke to, either to offer support, build networks, or to form connections and friendships.
The chapter on emotional well being in our report details the lack of social integration that the respondents were experiencing. This was extremely apparent not only from their direct responses to our questions but also from this effort to connect with other disabled women during these difficult times.
There was an overwhelming sense of grief and loneliness that pervaded most of our conversations. Whether it was a newly married Deaf woman from Mumbai negotiating with the communication barriers between her and her natal hearing family, or a young blind student who had to move back home to Guwahati and face restrictions and overprotection from her family, or even those undergoing stressful situations due to lack of resources and access to essentials.
Some participants–especially activists–did report that maintaining these networks and having triggering conversations with people was stressful. One participant, a 38-year-old woman from Trivandrum, living with spinal cord injury, even mentioned experiencing guilt because she wasn’t able to be offer support to someone else due to her own health issues.
“One of the patients wanted to meet me and talk to me, but I could not go, and she died in two weeks, so I felt so guilty. She really wanted to meet me before her situation deteriorated, but I couldn’t do it, so somehow I felt I didn’t do justice to her,” she said. Nevertheless, they constantly continued to reach out to more people and create their own support networks.
A mental health crisis has been recognized to follow the ongoing Coronavirus crisis. However, just like in other conversations on mental health, persons with disabilities – especially women with disabilities, have been left out. Emotional well being is directly dependent on access to information, adequate food supplies, availability of good healthcare facilities, and access to education and employment–all of which are lacking at the moment for women with disabilities, who face disproportionate consequences of the pandemic.
For example, all the d/Deaf women who participated in the study reported heightened anxiety due to not having access to accurate information about what was happening. “Few of my friends told me everything is shut. I did not know what the problem was, but later on, I learnt from ISH news – which is a news channel for the deaf community. I learnt from there that the virus is going around and to stay home,” a 35-year-old deaf woman from Delhi explained. “In the starting, I was told to stay back at home, that is it. They just said, if you got out, you would die.” It is impossible to imagine the persistent fear of dying without knowing the cause or ways to prevent it.
There is also little to no access to therapy spaces for disabled women to help them create an atmosphere of emotional support to deal with the uncertainties that come with the crisis. Networks of solidarity then become the only safe space they can access to feel a sense of community and work to lessen the trauma and loneliness they have been experiencing.
Article 19 of the Convention on the Rights of Persons With Disabilities states the importance of community living for persons with disability, by making sure that they are included and not isolated or segregated from society. Chapter 5 of the Mental Healthcare Act (2017) also includes the right to community living for all persons.
Although the crisis and new social distancing norms have certainly made us re-evaluate what community living looks like, building support networks in new ways is even more important now. As exemplified by our respondents, forming these networks and staying connected to other disabled women goes a long way in alleviating the anxieties that have emerged during the course of their everyday lives in an uncertain world.
Community care then needs to extend beyond disabled women caring for each other, which was something we heard in our research. We need a new imagination/world where we acknowledge the heightened anxiety of contracting the illness, especially among vulnerable communities, the lack of information accessible to disabled women, and ensure we build a society where inclusion and diversity are at the core of our emotional well-being.