Invisible minority in tatters

At an office in Delhi NCR, the phone rings off the hook. Frantic voices on the other end ask for help to get food ration, medicine, and money. With every additional day of the lockdown, the voices grow painfully desperate. Staff at the National Centre for Promotion of Employment of Disabled People (NCPEDP) listen to the voices in different tongues. There’s something more to those voices--a kind of grave awareness that whoever is on the other end is their only way to get relief.

The desperate voices belong to the blind, the hearing impaired and even those with Thalassemia urgently needing blood transfusion to survive. They would usually find help when they step out. But these are extraordinary times when social connectivity, the biggest strength, has faded.

Even as they frantically dial the phone to reach the helpline in faraway Delhi, an aid worker or a health officer could just be at their doorstep, not realizing that a person needing help
is just a few feet away, behind the closed door.

As a result, this invisible and vulnerable minority has become more isolated, ignored, and excluded, said Arman Ali, Executive Director, NCPEDP. “They’ve been pushed to the edge of being hungry and sick. Forget about special needs, survival itself has become difficult and the days to come seem bleaker,” Ali noted.

In the absence of transport and access to hospital care, those with pre-existing medical needs-- such as the transfusion-dependent

Thalassemia patients--are missing the care needed just to survive. Those with psycho-social disorders are left to struggle without medicine or counselling, services that are usually available at a phone call.

NCPEDP’s primary task is to usher in a policy change and make inclusion more intrinsic at government, corporate and social levels. Now though, the organization is among a host of others fighting to get relief to thousands missing from the government’s radar.

The Rights of People With Disability (RPWD) Act, passed by the Indian Parliament in the late 2016, has elaborate provisions for managing the community during the times of disaster.

The government tried to make the provisions operational by including them in the post-lockdown guidelines. But they only remain on papers, in urgent want of implementation, said Ali.

That’s how things are for people with a disability even on ordinary days, and it isn’t any different during the lockdown. Organisations and community representatives have to badger the authorities with a slew of petitions, dozens of meetings and, if nothing works, hunger strikes on the Delhi streets to make themselves heard and included.

The same organisations often step into the wide gaps between service and delivery and do the coordination job that should ideally be done by the government.

Today NCPEDP and others find themselves in the unenviable position of reaching information (to their callers) and ensuring they get rations, besides negotiating with various authorities and healthcare workers, doctors, the police and employers to ensure the most mundane of services to the most critical such as ambulance. “Disability is more an afterthought,” laments Ali.

NCPEDP has also written to the Prime Minister, who heads the National Disaster Management Authority, highlighting the struggles of disabled people across the country, but got nothing more than a cursory response.

Shockingly, they aren’t sure if people with disability are even included in the Covid-19 testing process in all states. “In Tamil Nadu, they established a helpline for people with disability,” Ali says. “I tried calling them to get help for people there, but I couldn’t even reach the number.”

A few bright spots exist such as Karnataka’s Covid-19 video made available in sign language and Uttarakhand allowing easy movement of caregivers. But this apart, most state governments are largely missing the plot when it comes to people with disability.

The only expectation of NCPEDP and others is that the government should make services more inclusive. “We’re just a non-governmental organization and we can only reach the authorities,” Ali says, as he wonders how to shake the system to the extent that it would understand the gravity of the situation. Continued ignorance, activists like Ali feel, would only pile more pain on the silent sufferers.