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Tuesday, August 11, 2020

Pandemic and a lockdown: Persons with disabilities grapple with more challenges

To make matters worse, PwDs with compromised immunity and chronic conditions tend to be at a higher risk of getting coronavirus.

Written by Jayashree Narayanan | New Delhi | Updated: May 26, 2020 12:45:29 pm
PwDs, persons with disability, coronavirus, covid-19, indianexpress, lockdown, indianexpress.com, sanitisation, masks, hand sanitisers, blind people, visually challenged, wheel chair assistance, disability and coronavirus, nipun malhotra, anjlee agarwal, praveen kumar G, arman ali, How are people with disabilities coping with the current crisis? (Source: Representative Image/File Photo)

For 33-year-old Apoorv Kulkarni, a person with low vision, it is cleaning utensils, getting broken gadgets fixed and not being able to choose between white and brown bread in a market aisle that’s taking a toll. “I have designed my life for an independent existence. But it’s little things that add up and stress me out. I don’t have my domestic help to run errands,” confessed the Gurgaon-based professional who works in the mobility sector.

Then there is Anis Malik, 40, a disabled person who underwent hip surgery in March 2020. After his stitches were opened on April 3, a few days later, on April 14, he started bleeding. Owing to the lockdown, he could not get an ambulance to reach the hospital. “I was facing a financial crunch since February due to rising medical costs and during the lockdown, it became worse until the Maharashtra Disability Commissioner and Anjlee ma’am (disability rights activist Anjlee Agarwal) stepped in. They helped me get an ambulance, ration and medicine,” recalled Malik, who is now recovering at home. His wife, who has been trained by his physician, currently does the dressing for the wound every day.

For persons with disabilities, the pandemic and consequent lockdown have come with diverse challenges, from sourcing essential supplies to accessing medical treatment, exercising social distancing and much more.

Anjlee Agarwal, co-founder and executive director, Samarthyam, who suffers from muscular dystrophy, commented, “People with Disabilities (PwDs) in India were anyway the most vulnerable section. Moreover, many PwDs and those living with high-support needs, like cerebral palsy, spinal cord injury, multiple sclerosis, spina bifida, muscular dystrophy, paraplegic, etc, need assistance and support for even basic activities of daily living, including feeding, bathing and dressing.”

For those who support families, “the disruption has hit them very badly”, making them dependent on family members to take over, explained Vickram Crishna, honorary secretary, tech NGO Bapsi (bapsi.org). Agreed Sheela Sinha, director education, Helen Keller Institute for Deaf and Deafblind, Mumbai, and mentioned how people with multiple disabilities are doing odd jobs to fend for themselves. “There are many young people with hearing impairments who were employed in malls, shops, hotels, in private offices as data entry operators and so on. They were supporting themselves and at times, a spouse and children too. Extended families are not always in a position to offer support. It’s not just loss of income, since they may even have to lose their jobs due to the financial damage faced by the employer.”

“The challenges for PwDs are mammoth and the lockdown has only made it worse,” remarked Upasana Makati, founder and publisher, White Print, a monthly magazine for the visually-impaired. “Some of my readers are desperately looking for ‘work from home’ jobs, while others face difficulty in accessing delivery apps, which lack disabled-friendly interfaces,” she said. Agreed Praveen Kumar G, who is visually impaired and lives in Delhi, “For a blind person, isolation becomes even more of a challenge owing to dependence on others. Ration shops are difficult to access. E-commerce platforms are not accessible with screen readers. Tactile communication and navigation is inevitable, making self-isolation more challenging.”

Twenty six million or 2.21 per cent of India’s population is disabled as per Indian Census 2011 while as per World Health Organization, 15 per cent of the world’s population is disabled. For such people, the most important measure to check the spread of the novel coronavirus — social distancing — is near impossible. Self-isolation is no less difficult.

“For a person like me, social distancing is impossible due to dependence on others to fulfill physiological requirements,” pointed out activist Nipun Malhotra, who suffers from a congenital disability called arthrogryposis which has left the muscles in his arms and legs underdeveloped, and needs wheel-chair assistance.

And what about children? In fact, a large percentage of children with multi-disabilities are emotionally very vulnerable, pointed out Sinha. They are stuck at home with no social interaction beyond family members and lack of activities or games to stimulate them. There is also a disruption in their routine interaction with familiar persons and the physical environment through the training centre, school or programme they attend. Children may face “severe behavioural issues” that may crop up due to “pent up frustration, lack of occupation, change in routine and above all in case of children with relatively lower cognitive level, the inability to comprehend the reason for this sudden change in their lives, Sinha told indianexpress.com.

To make matters worse, PwDs with compromised immunity and chronic conditions could be at a higher risk of contracting coronavirus infection. “It can be harder for disabled people to take prudent steps to protect themselves from the coronavirus outbreak. It also takes away their freedom and makes them anxious and thus affects their mental health,” said Dr Mugdha Tapdiya, associate consultant, Internal Medicine, Fortis Hospital Vasant Kunj.

PwDs, including those with physical, sensory and cognitive limitations, are facing a hard time during this coronavirus crisis given that there is also lack of access to accurate information, social distancing and isolation norms.

In fact, much of the advisory by the government has been visual advertisements with audio or in written format. Shakuntala Gamlin, the secretary of the Department for PwD, asked the chief secretaries in March 2020 to instruct the health and publicity departments of the states and union territories to “make all COVID-19-related information available in Braille and audio format for persons with visual impairment, videos with sub-titles and sign language for those with hearing impairment and information on all websites and social media with optical character recognition and e-PUB format”. She also asked the states to provide priority treatment to PwD under the Right of Persons with Disability Act, 2016. A Government of India Disability Inclusive Guidelines was issued on March 27, 2020 which talks about making information available about COVID 19, services offered and precautions in simple and local language in accessible formats; i.e. in Braille and audible tapes for persons with visual impairment, video-graphic material with sub-titles and sign language interpretation for persons with hearing impairment and through accessible websites.

However, not all the information is yet available in accessible formats, pointed out Crishna. Television announcements are not subsequently made available in “plain text by most of the channels or online papers are pdf and not text readable, with advertisements and notices that are inaccessible for a blind or deafblind person,” mentioned Vickram Crishna, honorary secretary, tech NGO Bapsi (bapsi.org). Notably, screen readers used by a handful of literate deafblinds can only read plain text and not pictorial texts which becomes a huge hurdle.

Zamir Dhale, founder director, Society for the Empowerment of the Deafblind (SEDB), commented, “Most people are not aware of the problems of deaf and deaf-blind persons. When I do not respond to verbal queries because I do not know that somebody is trying to speak to me, this causes confusion for others. And if I try to communicate by grasping somebody else’s hand, so that I can sign on the palm, people get frightened. This has always been a problem, but it has got much worse, thanks to the fear surrounding the contagion caused by Covid-19.”

Praveen Kumar added, “Despite access to information being a challenge for the blind, All India Radio’s COVID-19 special news has been a useful resource.”

Earlier, in the absence of proper guidelines, many disabled had to do without caregivers for many days without curfew passes. Agarwal mentioned, “I had no clue how I would get access to my caregiver who helps us (my sibling and mom) at home for activities of daily living. I started talking to local police and higher officers in the government. I was denied the curfew pass as I was ‘disabled’ and was asked to call ‘relatives’ to seek help during the lockdown. I was stunned; they did not have any instructions/orders on ‘disability inclusive response and consideration’ during lockdown.” However, after several attempts, on April 7, 2020, a Delhi government order to get an e-pass for caregivers with the help from Secretary and Officers of Department of Empowerment of Persons with Disabilities, Ministry of Social Justice and Empowerment was issued.

disability, everyday challenges, indianexpress.com Zamir Dhale, who identifies as a deafblind talks about the challenges he is facing in this lockdown. (Source: Zamir Dhale)

So, how are caregivers and family members ensuring hygiene and social distancing norms? While Kumar feels it is “best to minimise physical contact by not taking assistance from more than one person at this time, persons with weak lower or upper limbs who are not able to access washbasins, are counting on their caregivers for help. “What we are doing is to ask our caregivers to lift our hands. Once we wash and come back, we have to move our wheelchairs. So, we are also trying to disinfect our wheelchairs too with a cloth, water and soap. We have asked our caregivers to keep a set of fresh clothes at our place. Once he comes from outside, he changes. And he disinfects himself. He repeats the same procedure when he goes back home in the evening,” Agarwal told indianexpress.com.

Agarwal said they have started promoting the procedure of disinfection because many people do not have sanitisers. “The elite few are only 1-2 per cent in India. We advise everyone to make home sanitisers by mixing baking soda with water and vinegar.”

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