Imagine being affected by COVID-19 and simultaneously sustaining a bad fracture to the limb.
Life would definitely be not easy as COVID, in itself, can put one through immense miseries; a life in strict isolation being just one facet. So, imagine the plight of thousands of differently-abled people who are COVID affected.
For the physically challenged, going to a COVID firstline treatment centre or a hospital can be a nightmare with accessible toilets and inclusive infrastructure still remaining elusive.
Arifa’s tale
Wheelchair-bound Arifa’s (name changed) story is just a case in point. Arifa lived alone in an apartment in Thiruvananthapuram and she tested COVID positive. Her friends wanted to shift her to a first-line treatment centre. Her friend, advocate J Sandhya, made several calls but couldn’t find even a single centre that was wheelchair-friendly or had accessible toilets. Despite facing breathing issues on Friday, Arifa had to stay put at home; unable to go to a treatment facility that would allow her to move around on a wheelchair.
“As per the Rights of Persons with Disabilities Act, 2016, those with disabilities should be guaranteed equal protection and safety. They must be given priority by the disaster management authority, as COVID-19 is declared a national disaster. If we can’t find a single disabled-friendly centre in the capital city, imagine the situation in other places. The health department should immediately issue an SOP for proper management of the situation,” Sandhya said.
Owing to physical constraints, Arifa said, it was very difficult for her to access or use a common toilet in a ward. She said access, privacy, and hygiene were major issues in common toilets.
Caregiver support
Finding a caregiver was another task, especially during COVID. “As an independent working woman, I might be able to pay for some facilities. However, most disabled people depend on their family members for most of their needs. Some are seen as a burden. COVID has made matters worse,” she said.
Arifa said, despite concerns over COVID spread, she had to travel to work each day. “As disabled people are more vulnerable to various infections and have lower immunity, options like work-from-home should be allowed,” she said.
Guidelines
Interestingly, the Department of Empowerment of Persons with Disabilities, under the Union Ministry of Social Justice and Empowerment, had issued a ‘Comprehensive Disability Inclusive Guidelines for Protection and Safety of Persons with Disabilities during COVID 19.’ It has been specifically mentioned that those with disabilities should be exempted from ‘essential services’ as they could easily get the infection.
It also lists out things to be done, like, ensuring priority treatment and door delivery of essentials and setting up of peer-support networks during quarantine.
Ashla Rani, trustee of palliative care NGO Pallium India, said disabled persons’ concerns were not just about health. It was about dignity too. “My caregiver is my 63-year-old mother. In most cases, caregivers too are in the vulnerable category. So, they should be isolated from the patient. If infected, my fears are whether I would be able to take bath or use toilets,” she said.
Ashla said disabled people should be given priority in testing and vaccination. “Though the government announced vaccination for the elderly and subsequently for those above 45 years of age, there was no statement regarding the vulnerable sections like the disabled.
“There should be a separate time slot or venue, as it is difficult to ensure social distancing or wait for long hours,” she said.
“One disabled person whom I know recovered from COVID-19 but returned home with severe health complications, which were not properly addressed. It is not fair to blame health workers who are already exhausted. The government should create a pool of volunteers, young or vaccinated, who are ready to offer caregiver support for COVID-infected disabled persons. It is not an impossible task in a society like Kerala where community-driven initiatives get good response,” Ashla said.
Ashla also said that SOPs for the disabled should have options like supply of kits with equipment like oximeters to manage treatment at home. Arifa said the Health Department should enable home COVID tests for the disabled.
Biju Prabhakar, secretary, Social Welfare Department, said though initiatives were taken to make all government buildings disabled friendly. There have been procedural delays though. On priority vaccination, he said it was for the health department to take a call.
(Jisha Surya is an independent journalist based in Thiruvananthapuram. To read her previous works for Onmanorama, click here)
