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TWO-FRONT BATTLE

Differently abled Indian healthcare workers fight a lonely battle against Covid-19

From our Obsession

Being Human

We’ve never been as connected, or as isolated.

In the five years that he has worked as an assistant professor of microbiology in a government-run medical college in Maharashtra, Narendra Bapat (name changed to protect identity) has fallen in his facility a number of times.

The microbiologist has muscular dystrophy, a genetic disorder that is progressively weakening his muscles. Therefore, walking is a struggle for him and poor balance causes falls. However, as a lecturer, Bapat is perfectly capable of performing his duties. His room on the first floor of the college building is set up with a high stool and table, so he can mount and dismount his seat without assistance.

Laboratory work isn’t difficult as he can stand for as much as an hour and a half at a stretch.

In late March, when his hospital was getting ready for testing Covid-19 samples, the 33-year-old was aware of the Department of Personnel and Training’s (DoPT) order that people with disabilities should be exempted from contributing to essential services during the pandemic, due to the greater health risk to them in case of Covid-19 infection.

Being a central government ruling, all states need to follow it up with their own directives to make it effective. Some did, but only for the lockdown period or for a certain cadre of workers. Others completely ignored, making it tricky for health care staff to find their own ways to negotiate with their department heads for the rights they have through the country’s Rights of Persons with Disabilities (RPwD) Act.  Enforced in April 2017, RPwD guarantees equal protection and safety for persons with disabilities in “situations of risk, armed conflict, humanitarian emergencies and natural disasters.

In the microbiology department of Bapat’s hospital, prep for testing involved instalment and familiarisation with equipment and doctors had to run around making frequent trips between hospital buildings. “I need to hold a wall as I walk and take the support of a hand railing when I climb stairs,” Bapat says. Touching additional surfaces puts him at a higher risk of catching the infection.

Like a lot of government hospitals in India, Bapat’s facility is only partially accessible, which means that the most basic things like lifts are rare, and tactile floors, Braille signage and sign language interpreters are completely absent.

The struggle

Bapat’s state, Maharashtra, passed an order for exemption of persons with disabilities on April 21, applicable only until the lockdown. However, the Covid-19 samples were already being tested in his hospital from April 10. Bapat had tried persuading his head of department to recruit him with other work unrelated to sample testing. “But even the DoPT letter did not convince him,” he recalls. “It gave my HOD and colleagues another chance to tell me I don’t try my best.” 

And then, just before his hospital started Covid-19 sample testing, Bapat came across the contraindications of hydroxychloroquine, which, at the moment is being considered as one of the drugs to prevent and treat Covid-19.

Hydroxychloroquine can cause further muscle damage to a person with muscular dystrophy. “That’s what helped my HOD understand that an infection could have serious implications for me,” he said.

Bapat since has no obligation to work with Covid-19 samples and has been given complete charge of the department of microbiology, where he does all administrative work such as looking after the laboratory and documentation, while the students are on leave and other doctors of the department work at the frontline. Maharashtra government’s letter issued lately has granted him paid leave until the lockdown, but the 33-year-old ensures he is available in his department every single day. “I don’t want anyone to think that I’m making excuses not to contribute during the pandemic.”

Dealing with it

There’s a reason behind Bapat’s earnestness. Health care staff with disabilities across India are being ridiculed and even being written off for their inability to contribute at the frontline, and have to work harder to prove themselves.

Health care staff with disabilities are being ridiculed and written off.

Last week, the director of India’s premium public hospital, All India Institute of Medical Sciences, Rishikesh, wrote to his staff that anyone who is unable to effectively discharge duty due to a “physical or mental disability” would be compulsorily retired.

On complaints made to the ministry of health and family welfare by the disability rights group, “Doctors with Disabilities” he retracted and rectified his order in a matter of days. According to New-Delhi based doctor Satendra Singh, founder of Doctors with Disabilities, the roots of such an insensitive statement by a hospital head lie in the years of ignorance, stigma and discrimination around disability in the country. 

Dr Divya Singh, a paediatrician who has been a quadriplegic for almost seven years after an accident, uses a motorised wheelchair for mobility. Singh’s injury has weakened her respiratory and cardiovascular systems.

“It takes me a month to recover from seasonal flu,” she says.

As a medical officer in a government hospital in Ranchi, she tends to OPDs and emergency patients in the morning and evening. During the lockdown, her driver is on leave and public transport is unavailable. Her full-time assistant who, among other things, helps with catheterisation to drain her bladder every few hours at work, is unwilling to accompany her to the hospital. Divya Singh was using her paid leave to stay at home during the lockdown period as Jharkhand state’s directive for the exemption for people with disabilities is yet to reach her hospital. Then she learned about the national teleconsultation service e-Sanjeevani OPD, and scrambled to get herself registered, to be able to serve during the pandemic without being physically present in the hospital. 

The problem, Satendra Singh says, is that hospitals and clinics do not understand “reasonable accommodation” which is a right of every person with a disability as mentioned in the RPwD Act. He is referring to the necessary and appropriate modifications workplaces should make to ensure persons with disability are able to access everything in the same way as the nondisabled. “Offering the flexibility to work at a slower pace, taking breaks, creating an accessible work environment, and the provision to work in alternative departments such as telemedicine are all reasonable accommodation,” Singh says. “We need to be fair and give everyone a level playing field to be able to do their best,” he asserts.

Serving as a medical officer in a government-run clinic in New Delhi, Dr Desh Raj thinks this is a good time to demonstrate his professionalism and loyalty to his country. The 38-year-old physician who walks with the help of crutches and callipers due to polio in both legs is all set to manage a fever clinic for testing Covid-19 patients starting today (May 8). While the risk of infection is greater for him due to constant contact with his assistive devices, he feels that being younger than his senior colleagues, his body would be fitter to fight infection. “Now is the time to prove that I’m capable of doing anything for my profession,” says Raj.

Exemptions, of course, are for those who need to use them. “It is best to honour choices and save resources while we can – both human and equipment,” says Satendra Singh.

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