For an inclusive response

The government’s response to COVID-19 has a profound impact on the lives of people with disabilities as it fails to recognise their need for adaptive facilities and support mechanisms.

A physically challenged woman on her way to collect pension, in Bengluru on April 18.

The past, like the future, is indefinite and exists only as a spectrum of possibilities.

—Stephen Hawking

The 1.3 billion people living withdisab ilities (PwDs) across the world are no strangers to social exclusion. But the COVID-19 pandemic and the lockdown measures imposed to contain it have forced exclusion on the rest of the population. For the first time in our lifetime, a large chunk of the world’s population is coming face to face with exclusion, isolation and physical distancing, which has been the norm for a large chunk of the disabled population. A change in working practices, such as work from home (WHF) and flexible working hours (FWH), door-step delivery, and use of video conferencing for judicial services are some of the adaptations that the disabled community has been seeking for long. The pandemic and the consequent lockdown have radically altered society’s comprehension of issues and resolution methodologies.

In the past two months, the discourse on the impact of COVID-19 did not focus adequately on issues confronting the disabled, the world’s largest minority group, despite there being universal disaster management protocols addressing their concerns. An attempt is made here to draw attention to these issues.

Having a disability in itself may not be a risk factor, but people with specific disabilities or chronic conditions are more vulnerable. Existing health conditions, such as those relating to respiratory functions, immune system function, heart disease or diabetes, can be a contributing factor. Physical distancing, underlined as a key preventive measure, can be problematic for people with severe disabling conditions. Nipun Malhotra of Gurugram, who has arthrogryposis noted: “We cannot practise it, as we are dependent on caretakers even for basic needs like hand washing.” For people like Zamir Dhale, who is deaf-blind, touch is the only means of communication. Keeping a safe distance from caregivers, who play a vital role in meeting the needs of many disabled persons, may not be possible in many cases.

Information is fundamental to fighting the pandemic, but PwDs may confront barriers in accessing vital public information and health care communication messages. Communications from government agencies often are not in accessible formats, such as sign language, same language captions, braille, audio, large print and plain language and easy–to-read formats to process the information.

The pandemic and the lockdown have worsened the existing barriers, leading to further curtailment of the independence of disabled people. Tapas Bharadwaj, a visually impaired student at the Amity Law School, Noida, in the National Capital Region, rues the loss of independence. While earlier he could move between the two floors of his house on his own, today he has to seek assistance, to ensure that he does not touch surfaces while negotiating his way.

For Abhishek Annicca, who has a degenerating congenital scoliosis and a compromised immune system, the closure of most home delivery services has meant that he must depend on friends or neighbours to procure groceries and medicines as he cannot go out on his own.

It is not just access to medicines or groceries that worries Professor Anita Ghai. A polio-afflicted wheelchair user, Anita is a cancer survivor and has various other health issues, including hypertension. She is worried that the public health system has become much more inaccessible for persons with disabilities, with hospitals refusing to attend to other medical conditions in the wake of COVID.

The dimensions are different for those with intellectual disabilities and their caregivers. The IANS reported on April 18 of the killing of an intellectually disabled 45-year-old man in Kolkata by his enraged father for refusing to wear a mask while venturing out. The incident underlines the difficulties people face in communicating a crisis situation with people with intellectual impairment.

Rising inequalities and distress impact women, especially disabled women, more harshly. The experience of lockdowns and isolation in various parts of the world has shown a sharp increase in domestic violence cases. Shampa Sengupta, who has been working on the intersections between gender and disability, opines that the majority of disabled women even otherwise face a lockdown situation, being confined to their homes. “But a government-imposed lockdown brings more worries as they would be unable to reach out to disability rights organisations in times of distress,” she noted. She pointed out that the guidelines issued by the Department of Disability Affairs in the COVID-19 situation have failed to address gender issues.

People with thalassemia and other blood disorders have a different set of problems. A thalassaemic requires blood transfusion on a regular basis while those with haemophilia and sickle cell disease require transfusions over a period of time. With hospitals out of bounds and donors unwilling to go to blood banks, people with such disabilities will be left in the lurch. According to the National Blood Transfusion Council, there has been a 50 per cent drop in blood collection.

The neoliberal policies of privatisation of public sector units combined with outsourcing and contractualisation have narrowed the already limited avenues of employment for the disabled. With large sections of the private sector being averse to employing the disabled, reservation in the government sector has been the only solace. In the private sector, “last come, first fire”, has been a principle that managements the world over have employed when resorting to retrenchments and layoffs. The disabled are the last to be recruited and the first to be fired.

A 2016 report of the NITI Aayog states that the employment rate among people living with disabilities is extremely low, that is, 34 per cent. The overwhelming majority of them are engaged in odd jobs, vending on trains or hawking on roadsides. The stigma attached to leprosy prevents many of those cured from getting absorbed into the labour market leaving them to beg to survive.

The sham of a relief announced by the Finance Minister fails to take into account the additional costs that disability necessitates. Purchase and maintenance of wheelchairs, aids and appliances, services of caregivers, hiring of private transport owing to inaccessibility of public transport all entail additional expenditure. The ex-gratia payment of Rs.1,000 over a three-month period announced by the Minister averages to Rs.333.33 a month. It is a cruel joke. Besides, this paltry amount will only accrue to the 10,20,065 beneficiaries of the Indira Gandhi National Disability Pension Scheme. India has a disabled population of 2.68 crore as per the 2011 Census. This data does not accurately take into account all PwDs. Undercounting apart, the 2011 Census recognised only the seven conditions identified at the time of the Census exercise. Since the enactment of the Rights of Persons with Disabilities Act in 2016, 21 conditions have been recognised as disabling.

In a situation of continuous lockdown, boredom, loneliness, fear and anxiety have gripped large sections of society. The loss of employment and livelihood, loss of housing, depletion of support mechanisms and gender-based violence are bound to have an adverse impact on mental health. This could also lead to an increase in the number of suicides. Chabbu Mandal, a migrant worker from Bihar, is reported to have committed suicide in Gurugram.

Dr Nimesh Desai, Director of the Institute of Human Behaviour & Allied Sciences, points out that in any disaster, conflict or pandemic situation the mental health fallout is the worst. The sharp rise in the number of mental health cases reported from Kashmir, post-August 2019, underlines this. Many people with pre-existing conditions are likely to see an aggravation. An inability to access mental health services contributes in no small measure. Desai said “mental health systems should make sure that people are able to access them”. This is easier said than done. According to the National Mental Health Survey 2018 undertaken by the National Institute of Mental Health and Neurosciences, Bengaluru, the treatment gap of any mental disorder in India is as high as 83 per cent. The same survey also found that the number of mental health professionals per lakh population remains abysmally low and varies from 0.05 in Madhya Pradesh to 1.2 in Kerala.

Disability rights organisations have been calling for the application of the principles of equality and non-discrimination built into the United Nations Convention on the Rights of Persons with Disabilities as also the Rights of Persons with Disabilities Act, 2016. Experience from the West, however, has been depressing. In the United States as infection rates reached dreadful proportions, States began to unveil procedures to deal with shortage of ventilators. These were invariably to the disadvantage of the elderly and certain categories of disabled.

In a document released on April 8 on “Persons with disabilities in the COVID-19 response”, the International Labour Organisation said: “All crises bring opportunities, and the opportunity of the moment is to make inclusion of all previously marginalised groups—including persons with disabilities—a central element of all responses. By building on our experience with disability inclusion and deepening partnerships, we can support a sustainable and inclusive response to COVID-19.”

In a post-COVID situation, the exclusion experience of large sections of the general population will definitely contribute to ushering in a paradigm.

Muralidharan is general secretary, National Platform for the Rights of the Disabled.