Vijay Pandurang (45) is totally blind and lives alone in south Delhi’s Katwaria Serai. In the first week of April, he developed extreme fatigue and headache. He called up a few neighbours, requesting them to take him to a hospital, but no one did. “Helping me meant they would have to physically support me and they feared they might contract Covid if I had the infection.One night, I felt so sick that I slumped in the bathroom and could not get up for half an hour,” says Pandurang, who hails from Maharashtra and works with the central government in the Capital.
The next morning, he called up a senior colleague, who took him to several hospitals, but all refused to treat him or conduct a Covid test saying they had run out of test kits. “Finally, one hospital gave me a few injections in the emergency ward to relieve my headache and conducted a Covid test, which returned positive. Since I could not afford treatment in that hospital, I kept calling my friends to arrange a hospital bed for me,” says Pandurang.
After two days, his friends managed to get him admitted to a Covid care centre in Chhatarpur through a volunteer organization. “My oxygen level was 80 at the time of admission. I always knew that I was dependent on others because of my disability, but I never felt so vulnerable and helpless. Though I am blind, our healthcare system did not show any sympathy for me,” says a dejected Pandurang.
He is not the only one. Many people with disabilities who tested positive during the second wave of Covid-19 have had harrowing experiences while trying to access healthcare— a herculean task for them even in normal times. The social media was full of SOS messages from people with disabilities and their caregivers. Disability groups ran an online campaign with the hashtag #Disabled LivesMatter to draw the government’s attention to their plight. Most received help from voluntary groups and NGOs working for people with disabilities.
According to World Bank data, India has 40 to 80 million people with disabilities. The 2011 census pegged this figure at 26.8 million, with the National Capital Territory of Delhi accounting for 2.34 lakh, a number disputed by disability rights activists, who say that the actual figure is much higher.
The pandemic, people with disabilities say, has brought to the fore the inadequacies of the healthcare system in responding to their needs
“During the second wave, many more people with disabilities were infected. We got about 30 calls per day seeking help with medicines, tests, hospital and vaccinations,” says K C Pande, executive secretary, Blind Relief Association, an NGO that started a Covid helpline for the visually impaired earlier this month.
Ramdas Bhardwaj (40), who like Pandurang is totally blind, says the reason for panic is because people are reluctant to lend a helping hand for fear of contracting the virus. Besides, a majority of people with disabilities have poor health outcomes, low literacy and are poor and unemployed.
One day in April, Bhardwaj felt feverish, but since he couldn’t see, he had never bought a thermometer. His roommate too was blind. The next morning, he started coughing and felt breathless by evening. He called up an NGO for help, which, after three days of frenetic phone calls, managed to get him admitted to Sanjay Gandhi Hospital.
“ In the hospital, I was on oxygen support for five days, completely dependent on the nurses for everything, including going to the washroom. A kind neighbour has so far helped me with the food but I have no money for fruits and protein-rich diet that doctors advised me,” says Bhardwaj, who lost his job last year in a candle-making unit during lockdown and lives alone in Anandpur Dham, Karala, in north-west Delhi.
Families of people with disabilities too have had a tough time.
Tripta Gupta (27) lives with her blind father in Krishna Nagar. In the last week of April, her father had a low-grade fever for a week and one day, suddenly at midnight, his oxygen level dropped to 88. “I took him to many hospitals in an auto, but they did not admit him. They could see my father is blind, but that evoked no sympathy,” says Gupta, who finally got him admitted with the help of a relative to a Covid care centre in east Delhi. Gupta says her father struggled at the centre as he needed assistance every step of the way. “There should be dedicated hospitals for people with disabilities,” she said.
Rahul Thakur (34), who is deaf, could not agree more. Last month, he tested positive and spent a week visiting diagnostic centres and hospitals where he had a hard time communicating with doctors. “Though I was accompanied by my father-in-law, it was not easy to convey symptoms of my illness to doctors. I had to frenetically gesture, act out, and write on paper,” says Thakur, taking to HT with the help of a sign language interpreter. Thakur lives in Noida with his wife, who is also deaf.
A.S.Narayanan, president of National Association of the Deaf, said communication barrier is the biggest challenge for a deaf person. “ If they get sick and have to go to the hospital, they face several obstacles in communicating to the healthcare workers due to the absence of interpreters and so they might not get adequate care.”
Ruma Roka, founder of Noida Deaf Society which works for the welfare of the deaf, says her organization helped many deaf people consult doctors on video calls through sign language interpreters. “In fact, eight of our own colleagues, all deaf, were infected and had difficulty in communicating symptoms even to their family. Hospitals need to have a lot of visual communication through telescreen, signage, and posters to help the deaf,” says Roka.
“Our healthcare system must work to be more inclusive and needs to accord priority to people with disabilities in treatment and vaccination. All pandemic-related information should be made available in a format accessible to them. Healthcare workers should be sensitized towards their needs during their training itself,” says Nikhil Jain, president of Sambhavana, a disability rights organization.
When asked about the demands of the disability groups, Rajendra Pal Gautam, Delhi’s minister for social welfare, said, “We are already setting up vaccination centres exclusively for people with disabilities in all districts. We are also exploring the possibility of doorstep vaccination for those who cannot come to a centre. We have not received any demand as far as treatment and testing is concerned.”