Don’t Leave People with Disabilities Behind in the Covid-19 Response

Date: 25 May 2021

Author: Samarthyam, India                

At present with India battling probably the most mutant version of the deadly Covid-19 virus, there have been innumerable instances that have shown how persons with disabilities (PwDs) are neglected and end up falling through the cracks. As the ongoing devastation of the pandemic continues to unfold; in such a scenario, the poor, the marginalized and the ostracized end up being the most badly affected. Amongst them, PwDs are one of the most vulnerable populations.

Introduction

Inclusion of PwDs through the various aspects of the pandemic from the initial phase of the lockdown in 2020 to the vaccination drive to the present humanitarian crisis has been flawed, with challenges and gaps, at every step along the way. Even though, PwDs are at a higher risk of Covid-19 and even death, yet they are not being given the needed priority in India’s Covid-19 response. This can be observed from the fact that every guideline issued for PwDs has only emerged as a response to active advocacy efforts. Moreover, there are pending cases in various courts petitioning for prioritization in vaccination for PwDs also an advocacy initiative by the people for the people.

About the Project

Samarthyam in partnership with UNESCAP has commenced the project “Protecting and empowering persons with disabilities in the context of the COVID-19 pandemic”. The overall objective of this partnership is to strengthen the capacities of persons with disabilities, OPDs, mainstream community networks and government agencies in India to integrate the promotion of disability rights and disability inclusion into institutional and community structures, processes and mechanisms, thereby contributing to an improved standard of living for persons with disabilities. Samarthyam collaborated with APNO, the Rajasthan state level network of PwDs (an initiative of Sightsavers India) and consolidate the ground realities and challenges faced by PwDs.

Preeti’s Ordeal in getting Covid-19 Vaccine

A case in example is the lived experience of Preeti, a woman with locomotor disability, 35-year-old resident of Chittorgarh, Rajasthan and active member of APNO. When the vaccination for the 45+ age group began, she accompanied her father to a health center near their house to understand the provisions for both of them regarding the same. In the course of the conversation with the medical team present at the center, she was informed that the current drive is being carried out for both the senior citizens and PwDs. This came as a shock to her as in the Organization of Persons with Disabilities (OPDs) networks no such information was received. To her utter shock no information regarding the inclusion of PwDs in the vaccination programme was available on the concerned government portal as well. This gap in crucial information proved to be the biggest impediment that she had to face in order to register herself for the vaccination.

As a first step, Preeti had to physically go from pillar to post in order to gather the correct and relevant information from the concerned departments, exposing herself to the possibility of catching the infection by stepping out into public spaces and engaging with other people. She was left with no option, as they were no dedicated helpline or toll-free numbers to access the required information and related procedures.

Once she succeeded in registering herself for vaccination, the fight had just begun, as there were barriers to access vaccination centres, lack of ramps for wheelchair users and volunteers/ way finding signages in the centres during vaccination. Additionally, there were no special queues or priority procedures in place for vulnerable populations like PwDs leading to long waiting times for them, thereby increasing their vulnerability. Preeti said that, “studies have shown that PwDs are three times more likely to get infected or die of Covid-19 than the general population. They experience a higher risk of contracting the virus as they require staying in close contact with others for personal care needs. And if infected, recovering is a challenge.”

When the going gets tough, the tough get going

• Given this fact, it is most essential that PwDs are prioritized through the vaccination programme and for this Preeti strongly felt the following needs to be ensured:
• Availability of correct and precise information regarding vaccinations at all points of  information generation and dissemination amongst the populace;
• Information is easily available and complies with information and communication accessibility standards;
• Physical accessibility is met at all vaccination centres with appropriate facilities for wheelchairs, accessible toilets and requisite assistance for PwDs including volunteer support;
• Home-based vaccination drives for PwDs and senior citizens who cannot go to the centers; and 
• Drive-in vaccination points as established in Mumbai city in India.

Way forward

Deliberating on Preeti’s and other Members of the APNO from other districts of Rajasthan inputs, an Advisory was drafted by Samarthyam. The Advisory is to be notified by the central government for all state governments’ compliance The Advisory contemplates upon factors viz. Do’s and Don’t’s for PwDs, Caregivers and State Parties, and access to essential services by PwDs and their families. Hence, the Advisory is sent to Department of Empowerment of Persons with Disabilities, Ministry of Social Justice & Empowerment, Government of India for notification and implementation by the state governments.

Lessons learnt

Active advocacy and timely support from the central and state government can help in getting the necessary relief in the lives of PwDs and help them to protect themselves against the Covid-19 crisis. Self advocacy and heads up by PwDs during disasters, especially during the current pandemic will facilitate ‘leave no one behind’ and ‘Build Back Better’ towards disability rights and disability inclusion at the district level.