Around 60 kilometres away from the city of Mumbai, in Vangani village in Thane district, an elderly blind couple has spent the last month in fear, locked in their home. They want the Coronavirus vaccination but they are too scared to step out and risk their health.
"They have no support," said Manoj Kataria, a volunteer with a not-for-profit organisation that has been helping persons with disabilities get vaccinated. Nearly 450 blind families from Ambivali, Shelu, Ambernath, Badlapur and Titwala that lie on the Central Line have resorted to begging, as the Mumbai locals came to a halt with the first lockdown, said Kataria. "There's very little awareness on the coronavirus vaccination and they don't have the support, means or even the ability to queue up for hours at vaccination centres," he said.
Why Are Persons With Disabilities Unable To Get Vaccinated?
Earlier this month, Tony Kurian, a visually challenged PhD student from IIT Bombay, tweeted, "just to let you know that the #cowinregistration process is not accessible for screen reader users." Kurian hasn't been able to book a vaccination slot for himself. "The calendar is not compatible with screen readers. I tried to book a slot for May 12, but every time I clicked, it took me somewhere else," he said. Explaining the hurdles he faced, Kurian pointed out that the captcha is also not accessible to visually impaired people.
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Soon after the CoWin registration was opened for 18 years and above, the site crashed. The vaccination slots would appear and within minutes it would be booked. Days after, a bunch of techies built Signal groups to alert about the vaccination slots. However, that too didn't work for Kurian. "It takes time for us to access our phones, we can't be as fast as others. So how are we going to book slots if they fill up so quickly?" he asked.
"We face inaccessible infrastructure everywhere. We didn't need to face it even in the vaccination process," Kurian said, talking about the 26 million population in India who face either one or multiple disabilities.
BarrierBreak, an accessibility consulting and assistive technology firm in India, has started a hashtag- #CovidAccessibilityBugBounty. It's an initiative to submit accessibility bugs on COVID websites and mobile apps from anywhere across the globe. The campaign was started so that people with disabilities are not excluded at a time where access to information about the virus, treatments and vaccination is critical.
So far, there have been 366 bugs reported from India, on the CoWin app and website.
Divyanshu Ganatra, a clinical psychologist and corporate facilitator, said that since poverty and disability are very highly correlated, most of them do not own smartphones. "Even if they did, getting to the vaccination centre is not easy for disabled people," he said. A lot of them, Divyanshu said, will need an attendant for help in mobility and that is a 'huge challenge' in overcrowded hospitals.
Social distancing is very hard for the visually impaired. "We have to touch objects or be extremely close to someone for mobility. That isn't possible to do in the pandemic when we are supposed to follow social distancing norms," Kurian added. He said that the sensitivity of the staff at vaccination centres will be of utmost importance.
"You can't expect disabled people to stand at a vaccination centre for hours, that's not an option," said Divyanshu, who also happens to be India's first blind solo pilot.
A couple, both of them disabled and over 45 years old, went to three vaccination centres and yet couldn't get vaccinated. The centres were either too crowded posing a high risk of contracting the infection and there were no special facilities for people with disabilities.
What Has Maharashtra Government Done So Far?
The Brihanmumbai Municipal Corporation (BMC) has told the High Court that it will implement the door-to- door only when the Central government implements a policy on it. This came after Two Mumbai-based lawyers filed a public interest litigation (PIL) in the Bombay High Court seeking directions to the Centre, state government and the civic administration to provide door-to-door Covid-19 vaccination facility for senior citizens above the age of 75, and those who are physically challenged, bed ridden or specially-abled, and facing difficulties in visiting vaccination centres.
Mumbai started a drive-in vaccination for the elderly and specially-abled that was also cheered by industrialist Anand Mahindra, but, so far, it has been limited to people above the age of 45.
The central government has not announced any special measures for persons with disabilities while announcing vaccines for senior citizens and those with co-morbidities. Among the categories that were listed as co-morbidities, one was "persons with disabilities due to intellectual disabilities/ muscular dystrophy/ acid attack with involvement of respiratory system/ persons with disabilities having high support needs/ multiple disabilities including deaf-blindness".
The current circular only chooses a few disabilities, instead of all the 21 disabilities specified in the Rights of Persons with Disabilities (RPwD) Act, 2016.
However, disability rights activists have been pointing out that disabled people are a high-risk group, and recognised as such globally, because of dependence on caregivers and inability to maintain social distance.
"Disability need not be called comorbidity as most disabled citizens in India are at a higher risk of Covid-19 acquisition and even death. Instead of a comorbidity list, it should be a vaccine priority list of high-risk groups," the Disability Rights Alliance (DRA) said.
The Kerala government has relaxed norms for disabled people who can now register for the Covid vaccination only with their disability certificate. In Tamil Nadu, separate counters have been created for persons with disabilities.
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What Can Be Done To Make Vaccine Accessible?
"Persons with disabilities should have been on the priority list," said Kurian. Vaccination at the doorstep would have been 'ideal', but the IIT scholar said that one of the easiest things for states to do is to allow persons with disabilities for walk-in/drive-in vaccination by showing their disability certificate.
A PIL filed by two disabled persons in the Delhi High court has asked the government to treat persons with disabilities on a priority basis and to make special provisions for them to be administered the Covid vaccine.
Prioritising, administering vaccine free of charge, home vaccination, special counters for disabled people at the vaccination centre, allowing people with disabilities and their caretakers to register with a 'missed call', on-spot registrations, vaccination drives at institutes for disabled people-- are some of the demands made in the PIL.
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Adventures Beyond Barriers Foundation (ABBF), a not-for-profit organisation that has been supporting families of persons with disabilities during the pandemic have now started their vaccination initiative. Through WhatsApp and social media platforms, ABBF volunteers have been trying to raise awareness about the vaccine. In a crowd-sourced Google form, the volunteers are first listing out names of disabled people and their caregivers who want the vaccination and then helping them get it.
The organisation has partnered with some of the private hospitals in Maharashtra.
They have also written to the Union Health Ministry and the Maharashtra state authorities to ease the process of vaccination for disabled people by prioritising them at government vaccination centres, by removing the age barrier and through dedicated vaccination camps.
Divyanshu Ganatra, the founder of the organisation, said that the thought of door-to-door vaccination is a 'utopia'. However, he said that no thought has been spent on how to get disabled people vaccinated. "The mechanism is such that hospitals and vaccinations are accessible to only those who are on Twitter," he added. Calling it a 'colossal policy failure', Divyanshu said that he is hopeful of the vaccination being more accessible once the availability stabilises.
Sudhir Shenoy, Senior VP of EQUATE, who has been supporting ABBF through networks and raising funds said that outreach to the disabled community is urgent. He said that government vaccination centres alone won't be the solution. "We need to work with private hospitals too so that disabled people get vaccinated on priority," he said.
Shenoy explained how the volunteers mapped disabled people and people with special needs to help them get vaccinated. The bigger challenge, he said, will come in June when the vaccines become available to more. For that, the organisations have been in conversation with Uber to give free rides to vaccination centres.
As per census 2011, in India about 26 million persons are 'disabled' which is 2.21% of the total population. Shenoy said that's a very low estimate. "Studies have shown that 10-15% of the population of any country live with a disability. Our estimate is that there are at least 4-5 lakh disabled people in Mumbai itself," he said. "A very minuscule part of that population has received the vaccination," Shenoy added.
Removing vaccine hesitancy, making the registration process easy and opening up special vaccination camps for persons with disabilities are the only ways to fix the accessibility problem, Shenoy said.
In Vangani village, most disabled people are left without work and food, said Manoj Kataria. Kataria, who is partially blind following his surgery, lost his job last year in the middle of the pandemic. "Despite being educated, 90% of the people here are begging to survive," he said. While ration from the government only went to people who had ration cards, Kataria and other volunteers came together to help the residents get basic meals and medication.
Maharashtra government's Sanjay Gandhi Niradhar Yojana that offers a monthly pension to persons with '40% and above disability' comes once in a few months, he said. "With no earnings, most of the children here had to stop their education," he said.
Kataria said that persons with disabilities who work in the banking sector have not been vaccinated and that has led to some Coronavirus cases in the neighbourhood. "Most of the elderly and frontline workers who live here are not vaccinated yet," he said.
This story is a part of a series that BOOM is doing to understand what can be done to fix the problem of the inaccessibility of the Covid-19 vaccination.