Epidemic of wins and losses over viruses (and disabilities)

Trigger warning: Mental stress, anxiety and depression.

“56 COVID-19 Patients Won the Battle against Virus in Mumbai” – along with haunting figures of the daily death toll, these kinds of headlines also appear quite frequently in our newspapers. Undoubtedly, they bring good news to us – but in what language, with what implications? Kindly re-read the statement and mark the usage of the word ‘won’. If those who recovered are the ‘winners’, then by implication the rest are mere ‘losers’. This invocation of the framework of winning and losing, with which the narratives of disease are popularly perceived, is the same framework which (in an ableist culture like ours) tends to shape the experiences and reality of disability as well.

In the context of the coronavirus outbreak and the associated lockdown, persons with disabilities are facing unprecedented health and economic crises. But their experiences are hardly receiving any attention from the mainstream media. The (sensational?) news items about disabled persons that are receiving coverage in the newspapers, TV channels or online news portals are too selective to reflect the diverse experiences and difficulties of the disabled population of the country.

As I write this story, I’m acutely conscious of my privileged position and I use the same to write this article, and to reach out to my readers. My aim, by no means, is to represent the disabled communities but only to voice my own narratives which may find resonance with others.

I’m a blind person (an adult blind to be specific) with a certain level of hearing impairment. I identify myself as a queer cis man, and I work as a fulltime academician. My academic activities have come to a sudden halt because of the lockdown. In order to carry out my academic works, such as writing research papers and preparing for lectures or talks, I need the support and services of human readers. Now, because of this lockdown situation, reader services aren’t available. Of course, I use screen reading software, but they are particularly inadequate for my advanced level of academic activities. Most often the material needed for my research work isn’t available in accessible formats. In addition, I’m a person who hasn’t yet been able to acquire the technical skills needed to work with apps and advanced software.

It’s been months that I’m largely cut off from my professional peer group, friends and acquaintances, and my communities – disabled and queer. Lengthy telephonic conversations, which in the present situation are perhaps one of the few ways to stay connected with people, are not a viable option for me. Because of my hearing condition I have been strictly advised by my physician to talk over phone only for limited periods of time.

It can be easily understood that touch and tactile explorations form an integral part of the world of blind persons; and it’s needless to state that this dependence on touch is all the more profound in case of deafblindness. When physical distancing and self-dependence are fast becoming the ‘new normal’, touch and physical dependence are being perceived as undesirable. This is causing insurmountable problems for disabled persons like me, particularly in a country where inaccessibility is the norm. Even to accomplish something as basic as procuring groceries and medicines from the local shops, I’m completely dependent on others. Though I’m privileged enough to have the support of my parents, their own physical conditions like diabetes, high blood pressure, vitamin D deficiency and compromised immunities make them particularly vulnerable and prone to the crises.

Since I’m always housebound, my physical mobility has become severely restricted which in turn has aggravated my condition of sciatica. In addition, the service of my physiotherapist isn’t available at the moment. Severe toothache, swelling of the gums, and painkillers have become my regular companions, and visiting the dentist is impossible.

However, what is plaguing me more than these physical ailments is my mental state. I’m suffering from anxiety and insomnia, but I’m in no position to share my feelings and problems with an empathetic listener. Since I’m not yet out to my family members, I’m unable to share my ‘queer distress’ with them. Triggered by my anxiety and stress, I’m also haunted by guilt that despite being the youngest member of the family, and therefore comparatively less vulnerable to coronavirus infection, I’m unable to assist my parents in any significant way.

As explained earlier, seeking telephonic psychological counselling is not an option for me. Despite my desperate attempts to cope with the situation, I feel I’m faltering. I want to discuss my vulnerabilities and ‘weaknesses’ openly and publicly because I don’t want an ableist world to thrust the mantle of ‘successful’ disabled person, ‘hero’ or ‘winner’ on me. I’m really no motivational model of resilience!

It needs to be admitted that though I’m able to write about my mental ill-health so unabashedly, this may not have been possible for me in the pre-coronavirus period. Perhaps the sudden increase in the discourses on mental illnesses has made it easier for me to reflect on my mental conditions assertively.

The lockdown has also had an impact on my relationship with my mother, my primary caregiver, who is dealing with my tantrums, negative thoughts, and mental stress singlehandedly. She herself has been suffering from anxiety, which is now aggravated by the uncertain situation and the lack of mental wellbeing of her dependent. We’re involuntarily contributing to each other’s load of mental stress. Plus, since my mother, despite her physical ailments, is doing all the household chores (and I’m in no position to help her in any significant way), her general health is getting adversely affected.

Lately, I’ve come across some interesting discussions on how the lockdown’s opening up the world for persons with disabilities, many of whom are being able to take part in work and culture from their own home for the first time. Though these discussions make me feel hopeful, they are not quite akin to my own experiential reality. It’s true that work from home has significantly reduced the huge travel cost I had to regularly incur because of my inability to avail the inaccessible public transport. But in reality I feel deeply uncomfortable with this new work culture, which necessitates certain skills that I haven’t yet been able to acquire and technical infrastructure which is either not available or is inaccessible to me.

I sincerely hope the ‘new normal’ doesn’t create new forms of divisiveness and deepen the levels of discrimination. Since we’re in the process of revamping various structures and building new systems, it’s high time that we learn lessons from past mistakes and practice inclusion right from the point of inception, and not as a mere afterthought.

Main graphic credit: Pawan Dhall