How The Pandemic Made The World More Unequal For Women With Disability

The pandemic for women with disability has brought about a tectonic shift in the way they live, survive and sustain. So it has for populations across the globe, but it would be painfully near-sighted to say that we are all in the same boat.

We are not. For some, COVID-19 is just a tide that will pass and for many others, it's a ravaging wave that has made the world more unequal than it already was.

As per Census 2011, over 21 million persons in India live with disability, just above 2 percent of the total population. Out of these, 9.3 million are females. This large section of India's disabled women has been at a forced disadvantage for a long time intersectionally - health, employment, social identity, finance, infrastructure access. But their condition has seen a severe exacerbation in the last year with the onset and subsequent devastation of the coronavirus pandemic.

Hospitals, caregiving, transport, employment, education, and now vaccinations: do women with disability have ample access to all these as the non-disabled do? With data showing an increase in domestic and sexual violence against them, are disabled women protected? Can their experience of lockdowns and curfews be adjudged on mass parameters? Is their constitutional right to equal opportunity being safeguarded? Are governing powers attending enough to women with disability to ensure they feel included as we collectively fight a health crisis?

In an already inaccessible system for them, risks have increased and resources have reduced.

The World Health Organisation (WHO) notes, "Disability is thus not just a health problem. It is a complex phenomenon, reflecting the interaction between features of a person’s body and features of the society in which he or she lives. Overcoming the difficulties faced by people with disabilities requires interventions to remove environmental and social barriers."

If environmental and social barriers have only increased during the pandemic, on whom does the responsibility fall?

The Pandemic For Women With Disability: How It Has Been So Far

In 2020, Renu Adlakha, disability and gender researcher with Centre for Women’s Development Studies in Delhi, detailer her pandemic experience in a panel organised by the Prajnya organisation. "I have access to mobility, an independent source of income, live in a big city, in a community of middle-class households. And yet, I felt so deprived during the pandemic." That was when the second COVID-19 wave was yet to strike India; Delhi in particular.

Nidhi Goyal, a disabled feminist activist part of the UN Women Executive Director's advisory group and founder of Mumbai-based NGO Rising Flame, was also present on that panel. She tells us now that between the first and second waves of COVID-19 in India, not a lot changed.

"The first time around we spoke about access to critical care and health systems, domestic violence, emotional well-being. Not a lot of state announcements still have a sign language interpreter," she says. "Access to information becomes the first challenge for people across disabilities. I don’t think we’re even thinking of everyone, and then within that, persons with disability at all."

Neglected And Forgotten: Women With Disabilities During The COVID Crisis In India, a study by Rising Flame in collaboration with the Sightsavers NGO last year, dove into detail about the discrimination and inequality facing women with disability across ages. Out of the 82 women participating in the research from 19 states, a majority 75 admitted to lack of access to essentials, spaces, communication, information, education.

"In the starting I was told to stay back at home, that’s it. They just said, if you got out, you will die": a deaf woman, survey participant

How safe are homes, though? Data from the United Nations, National Commission for Women and Oxfam have all consistently flagged the rise in domestic violence against women during the pandemic. In India, reports said they were at a ten-year high, as domestic rape and emotional violence cases increasingly came to light. Goyal tells us about a man who abused his disabled daughter for whom the face mask created a barrier in lip-reading.

In April, the Supreme Court while upholding a man's life sentence for sexually assaulting a blind girl, observed, "This threat of violence can translate into a nagging feeling of powerlessness and lack of control making the realisation of the promises held by... our Constitution a remote possibility for women with disabilities." While the judiciary's statement is affirming, what's troubling is the dramatic lack of information with regard to disabled women facing violence. (Even the National Crime Records Bureau does not maintain disaggregated data on it.)

Just how many stories are going unheard? Can justice come in the absence of voices? 

The younger population between ages 10-19 years comprises the largest share (46+ lakh) of disabled persons in India, as per Census data quoted in the 2016 profile of disabled persons by the Ministry of Statistics and Programme Implementation (MOSPI). Where the digital chasm has widened discrimination at the secondary schooling and university level without enough learning tools in online classes, motor convenience has brought some relief and security. But the access barrier - especially with disabled children - still exists and from the point of view of research, there's a lot more complexity than is being perceived.

With the world online, playgrounds and courts - ever non-restrictive to age and dreams - have gone eerily desolate during the pandemic. And its inhabitants can feel the ache. Tasneem Fatima, national wheelchair basketball champ and founder-president of the Delhi State Wheelchair Basketball Association (DSWBA), tells us that though her privilege has allowed her to stay afloat in lockdown by taking up teaching, she misses the game and her teammates.

On the health front, there is an ingrown toenail that is giving her trouble but also the more persistent and fundamental flaw in the system. "I wanted to buy a new wheelchair and so had a word with the vendor. He made a huge bill of approximately fifty thousand rupees. We have to pay 5 percent GST on our wheelchairs. And though I knew that beforehand, I find it's unfair."

How Safe Are Women With Disability From The Virus?

It's clear that the centre's tech-first approach is not a foolproof, viable technique to mass vaccinate. Four months into the drive, India has only fully vaccinated 3.2 percent of its adult population. Given that vaccines are currently the only way out of the tunnel, the numbers are abysmal. More so in perspective of the large disabled population that carries higher health risks. What are the systemic shortcomings? What hurdles do disabled persons face?

Goyal lays it out, point-by-point. "First, access to caregivers. If families of people with severe disability – or they themselves - get COVID-19, access to caregiving is completely denied. Second, lack of access to health, not specifically for COVID-19, but even other medical support – therapist, physiotherapist, pain management, rheumatologists, psychotherapists, mental health practitioners. These facilities are not seen as emergencies, but these are significant for the daily functioning of disabled persons. And the lack of visibility makes it more difficult."

"Third, vaccination. The ability to reach the centre is hampered by inaccessible public transport. At the centre, for a disabled person living by themselves, it’s impossible to stand in the main queue and the crowds to go inside. Everyone’s worried about getting infected while they’re at the vaccination centre."

Information on access to vaccines for disabled persons is heavily clouded. With the initial lack of facility or ignorance to disseminate updates adequately, the government is keeping the disabled community largely on the sidelines of the vaccination drive conversation. More on the vaccine gender gap. 

On June 4, reports said a 100-year-old physically disabled woman in Delhi pleaded for home vaccination, but to no avail. Though 11 exclusive vaccine centres for disabled persons have been set up in the national capital, is the accessibility gap being filled at all? In the absence of door-to-door vaccinations, which persons with disability and their families are requesting, can it ever be?

Census data quoted in the 2016 profile of disabled persons by the Ministry of Statistics and Programme Implementation says out of the total disabled female population, 23 percent are elderly. A central notification says Near to Home COVID Vaccination Centres (NHCVC) will bring vaccines closer to the disabled and elderly via a community-based approach. How it pans out remains to be seen.

"These challenges are emerging not only because of the current COVID-19 situation but because disability was ignored even before. I say it's easier for me to fly to Brazil than access the street corner shop": Goyal

As they did for a large part of the second wave, it seems the youth has also shouldered some responsibility in making resources accessible to a bigger demographic. With vaccinations, they are trying to reach where governments - despite their coffers of resources - aren't. Shreya Vajpai, based in Maharashtra, has a sister with Down Syndrome. Worry for her translated into Vajpai volunteering time to help out other PWD families with registration on CoWIN.

"People with Down Syndrome have lower than regular immunity and need a lot of space to function. I’m only getting started trying to help other PWD families." She adds there are others like her, who are actively, independently devoting hours to register watchmen, house helps, civic workers so they have timely access to vaccines.

People with disability, sensitised to social and economic inequalities well, too have been lending a hand with pandemic relief work. Attached with organisations like Milaap and Uday Foundation, volunteers are doing great work in delivering food, medical essentials, masks and other facilities to the homeless and needy. Independently, women like Raji Radhakrishnan in Kerala and young Sindhuri in Karnataka have stitched masks at home to be distributed to those who need them.

Their hearts, minds and arms are open, waiting to be included. But public invisibility and neglect, lack of representation in decision-making seats, administrative blindspots in disaster response, negligent planning, and general citizen indifference have kept women with disability from walking in step with the rest of society.

"They aren’t asking for a lot," Vajpai says. "They are only saying they aren’t invisible. They exist. Their well-being matters. Their lives matter."