Renu* is a 12-year-old child with an autism spectrum disorder. In March last year, her father tested positive for COVID-19. As his primary contacts, Renu’s mother got herself tested for the coronavirus, and wanted her daughter to follow suit. However, “Renu refused to cooperate with the nasal swab,” Renu’s father tells us. “When [Renu’s mother] tested positive a few days later, we just had to assume that our daughter was positive as well”, he adds. The whole family isolated themselves for the next two weeks, during which it became increasingly difficult for the parents to make Renu understand why she could not step out of the house for her daily walks.
Fast-forward a year, onto India’s second wave of COVID-19, and we are yet to fully understand and cater to the range of difficulties that Persons with Disabilities (PWDs) experience — be it in preventing, testing and treating disease, or softening the socio-economic blows suffered — while living through a pandemic.
Unvaccinated, PWDs like Renu still find themselves at a higher risk of contracting COVID-19, alongside being more vulnerable to the disease’s effects. Prolonged lockdowns and disruptions to essential services have worsened the inequity that already existed between PWDs’ families and those around them. During a pandemic, their care and support systems, nutrition, livelihoods, social participation, mental health and access to health and education services need to be accounted for more proactively.
To understand the disruption to PWDs’ lives and help mitigate the challenges they have faced, the Indian Institute of Public Health, Hyderabad published “A Strategic Analysis of Impact of COVID-19 on persons with disabilities in India” in 2020. Financially supported by CBM India and Handicap International, the report offers actions and solutions for future waves of the current pandemic, future pandemics in general, and emergency preparedness programs. It was conducted during the initial national lockdown (late March to June 2020) and after the first lockdown period.
PWDs and stakeholders were surveyed over the phone, and focus group discussions were facilitated through a network of NGOs who care and support for PWDs across the country. What became clear through our study was that addressing the needs of PWDs requires a multi-stakeholder approach that can ensure uninterrupted care and informed decision-making systems for them.
How has COVID-19 impacted the lives of PWDs?
Even before the pandemic, public infrastructure in India’s cities and towns was always a challenge for PWDs. COVID-19 has complicated daily living for them, as a program officer of an NGO informs us. “The visually impaired need the support of handrails. They have to touch people and be in close contact with their escorts. This increases their risk of getting infected.” Often, this risk directly affects the mobility of PWDs. “We are very scared to go out because of the worry of infection and death,” one respondent with a physical disability tells us.
PWDs’ inability to move around coincided with the sluggish movement of goods and medicines during the nationwide lockdown. Basic necessities such as food and water, transport, and medicines were affected, with no clarity on when things would improve. “Many PWDs did not get their regular tablets for their mental health conditions,” says the person in charge of welfare schemes at an NGO. “In certain cases, information on COVID-19 that explains [how] it is a viral infection that spreads from people through cough and sneeze was unavailable in an accessible format.”
Besides supplies, access to healthcare has been impacted, right from COVID-19 treatment, mental healthcare, specific rehabilitation services, and education and schools for persons with disabilities. All of this was even before the second wave hit. “We can not even get my son’s callipers fixed, many months after the lockdown,” said the parents of one child. Another set of parents told us that “the Rashtriya Bal Swasthya Karyakram (RBSK) and district early intervention centre has stopped the weekly therapies which my daughter used to look forward to.” India’s digital divide—which has affected millions of children trying to access online learning this pandemic—affected children with disabilities and their families too. “Schools are using hi-tech things,” said a mother of a child with a disability. “I cannot afford a smartphone for my kid… it puts a lot of pressure on me.”
With limited access to basic needs and services, PWDs experienced restricted participation in other domains of life: work, livelihoods, leisure, stress management support, and community activities. This has strained their caregivers as well. “We had to close down the day-care we used to run for children with intellectual impairments,” says the principal of a school for special children after the first wave, clearly very upset. “But, the parents called us everyday and urged us to re-start. They could not handle the kids alone.”
Our psycho-social support team had contacted 31,520 persons in about 2,18,563 calls during this lockdown. Made 74,087 calls to support the parents of differently abled children and 24,690 calls to guest workers. We’ve also provided mental health support to health workers.
— Pinarayi Vijayan (@vijayanpinarayi) May 27, 2021
As with twelve-year-old Renu, such situations often left persons with disabilities with little clarity about the restrictions being placed on their lives. A program-in-charge who works with PWDs in villages says that “people could not understand why they were asked to stay indoors without meeting anyone. No proper explanation was given [by local authorities] for the reasons to stay indoors during lockdown,” he says. Staying connected with friends and others for social support, helpline details, and the latest information helped alleviate these situations.
The Silver Linings of the Pandemic Experience
While persons with disabilities were facing several challenges, the plus side is that there enormous amounts of community support, empathy and resilience shone through the pandemic. Existing networks were strengthened, while new networks for support and livelihoods were forged. These networks helped raise awareness, provide assistance for preventing, testing and treating COVID-19, and exchanged best practices between stakeholders. They also facilitated contributions to support persons with disabilities during the lockdown, and shared approaches and methods on how to mitigate the pandemic’s impact.
“During lockdown, we made WhatsApp groups for exchanging information,” says the Program Head of an NGO. Most states saw NGOs resort to this for community interventions in semi-urban areas. “We connected vegetable and milk vendors with people who needed them. We also made sure services, information, and supplies reached the needy,” they add. “COVID has broken our confidence and our trust in each other,” says a village head. “We have to quickly rebuild it across all communities, not just among persons with disabilities.”
However, this has been difficult to do because financial resources have been strained. Persons with disabilities struggled to go to an ATM or bank without an escort to access financial support via pensions. NGOs have faced funding cuts, as one program officer himself has a physical disability tells us, “Many persons with disabilities were among the people who had not eaten for days during the lockdown. They were dependent on helpful neighbours.”
Are We Prepared for the Next Wave and Future Pandemics?
These forms of distress could have partially been reduced by adequate government responses. Specifically assessing and collating PWD data, issuing clear and accessible guidelines along with sensitive policies would have been a good place to start. However, these initiatives often run the risk of assuming what persons with disabilities want for themselves. “PWDs are always portrayed [by government authorities] as the problematic people in society, but that’s not true,” asserts the founder of an NGO which works exclusively with PWDs. “Involve them at all levels [of policymaking], and they will solve their own problems.”
Stories of resilience among persons with disabilities are around each of us. In low-income communities, children with learning disabilities are being given easy-to-use, difficult-to-break, and low-cost play toys such as coloured wet clay that can be moulded into different shapes. “If we don’t help each other, that is not good. We can only conquer challenges with grit, and with unity. As a PWD myself, only we know how other PWD feel”, says a program officer from an NGO. His organization has introduced community-based rehabilitation measures such as engaging PWDs who are skilled in carpentry or ironwork to make assistive devices, fix villagers’ tools and bicycles, etc.
Such sentiments are based on the historical challenges that PWDs have faced during disasters. Every time they hope that more will be done the next time — but, this cycle of neglect repeats itself. Even if we look at the first and second waves of COVID-19 in India, there has been no difference. “We [as NGOs] do not have requisite capacity, and the government is not prepared for the future pandemic, or even the next wave of the current pandemic. They should involve PWDs in Gram Sabhas and include disability in the governance agenda if they are serious about inclusive planning for the next disaster,” says a program manager.
Doing Things Differently Hereafter
Basic ration may still be available to many PWDs during this second wave, but what about accessing it? More recently, persons with disabilities were not considered by health authorities to have comorbidities, which meant that they were not prioritised for vaccination. This adds insult to injury, especially given that many PWDs find it difficult to even sanitize their assistive devices, or move around without an escort, leaving them incapable of protecting themselves against COVID-19. The Greater Chennai Corporation, for example, organized a door-to-door vaccination drive for 1500 PWDs on May 22nd, but it was more than a month after the second wave surged. Gurugram and other district administrations have followed suit, but PWDs and their carers (especially in rural India) must still be vaccinated on priority because they are more vulnerable, and often have lower agency and negotiating power.
Even testing for the virus is extremely difficult with certain disabilities, as seen with Renu’s case. The Disability Commissioner’s office must reach out to the Health and Family Welfare Secretary and advocate for action that sees PWDs as meaningful citizens, instead of an invisible burden in society.
just to let you know that the #cowinregistration process is not accessible for screen reader users. For example, the calendar is not at all compatible with screen readers. government needs to fix this ASAP and ensure that blind individuals are vaccinated. #VaccinationDrive
— tony kurian (@mtonykurian) May 9, 2021
With livelihoods affected over the past year, special attention must be given to the needs of PWDs, especially for women and children with disabilities. This includes ensuring nutritious food, access to physiotherapists and counsellors, and priority healthcare and medical supplies. This can be achieved by using mobile clinics and providing services as close as possible to their houses, thereby reducing their dependence on public transport. Releasing enhanced disability pensions during and after this second wave is another important step. All personnel providing care for PWDs should be designated as people rendering essential services so that they are able to care for their wards responsibly. People like Renu’s parents should be vaccinated on a priority basis, and so should PWDs who are 18 years and older.
“Leave no one behind” is the tagline for Universal Health Care and Goal 3 of the United Nation’s Sustainable Development Goals. If India is to be considered a leader in social development and justice, affirmative action is non-negotiable while addressing the needs and concerns of its disadvantaged populations — including persons with disabilities. At the end of the day, PWDs are always going to be a part of our families, society, and population; without focused, concerted action, their day-to-day challenges are not going anywhere. SDGs and UN pledges aside, the needs of PWDs need to be accounted for in honour of protecting the basic and most fundamental rights of these citizens.