Two universally accepted arguments are that India has not yet peaked when it comes to Covid-19 cases and that Persons with Disabilities are more vulnerable than others when it comes to the coronavirus. We need to change the way we think about the disabled to protect them in a pandemic.
The best way to do that is by immediately creating joint secretary-level positions for disability affairs in the health, home and information and broadcasting ministries. These officers would connect the department and concerned ministries, ensuring disability is not overlooked during policy formation. Sole responsibility on a separate department — Department of Empowerment of Persons with Disabilities — makes disability policy reactionary in nature. The cost of that in a pandemic is human lives.
The most heartbreaking story for me in the Covid-19 migrant labourers’ crises came from Rajasthan. A helpless father stole a bicycle to take his disabled child back to Uttar Pradesh. He left behind a painful note saying, “Mujhe maaf kar dena (please forgive me)”. I was as shaken by the woman who walked from Gujarat to Madhya Pradesh with her disabled son on her shoulders. Or the 1,200-km journey Ajay Kumar Saket, disabled due to polio, undertook. These stories made national headlines. Most didn’t. The last few months have shown a complete failure of the government machinery when it comes to protecting Persons with Disabilities.
Struggles in lockdown
The biggest challenge Persons with Disabilities faced after the lockdown was imposed was access to caretakers and attendants for their physiological needs. The first few weeks were full of struggle with reports of many stuck on their bed, getting bedsores and families struggling to meet their basic needs.
The Department of Disability Affairs stepped in on 27 March, writing to the Union home secretary to allow free movement of attendants and caretakers. Gradually, states started providing curfew passes to caretakers of the disabled. However, challenges for the disabled continued. Either because caretakers couldn’t physically reach them — public transport was not available— or because RWAs didn’t allow them in.
Finance Minister Nirmala Sitharaman announced an ex-gratia of Rs 1,000 through two equal instalments over three months in her first stimulus package on 26 March. Many in the disabled community felt it was too little. What they didn’t realise was that even the ‘too little’ impacted only 7.6 per cent of working-age persons with disabilities who are part of the Indira Gandhi Disability Pension.
Trapped and inaccessible
Most of us are dealing with information overload on Covid-19. But the case is very different when it comes to the Blind and Deaf. Almost all government notifications aren’t accessible to the Blind. In what seemed to be a major relief to the Deaf, Doordarshan decided to have a live sign language interpreter for Prime Minister Narendra Modi’s speech on 12 May. Unfortunately, the sense of relief soon turned to despair as the Doordarshan’s interpreter was so incompetent that no one understood what she signed, according to the National Association of the Deaf.
With education and schooling shifting to the home, many Persons with Disabilities are feeling completely excluded. The Intellectually disabled don’t have access to special educators, while many Deaf and Blind individuals are being taught on platforms not accessible to them. As part of her second stimulus, Sitharaman said that the government will look at making online education accessible to the Deaf and Blind. What India needs, and the disability sector has been fighting for years, is online accessibility standards and accessible procurement policies to incentivise platforms to become accessible. With the absence of such standards, it didn’t come as a surprise to me that the Aarogya Setu app was criticised by the All India Confederation of the Blind as being completely inaccessible.
Many Persons with Disabilities also need regular treatment and visits to hospitals. Lack of planning has meant people with Thalassemia are struggling to get blood, people with spinal cord injuries are struggling to access physiotherapists and people with chronic pain and those with regressive disabilities are regressing faster without timely medical treatment.
Disability needs better policy response
A common fear among many Persons with Disabilities is what happens if they are forced to go into a quarantine centre or worse still, get the virus. Most quarantine centres are inaccessible and have a dormitory-style common bathroom completely unusable for those with most disabilities. Also, how will Persons with Disabilities manage alone in quarantine centres or Covid wards without access to their attendant or caretaker. Fear of living with Covid is so high that a favourite topic in some spinal cord injury groups is “Do not resuscitate” — with some PwDs even arguing the merits of euthanasia.
To be fair to the Department of Disability Affairs, it has constantly been issuing guidelines and communications to the health and home ministries at the Centre and concerned authorities at the state level. However, does it instil any confidence in the Disabled community? A few weeks after a circular was sent out from the disability department urging all governments to ensure PwDs work from home, AIIMS Rishikesh director released a circular stating: “Any employee (including faculty), if unable to perform duties, due to physical or mental disability, which interferes with efficient discharge of duties, will be compulsory retired, as per CCS rules”. This wasn’t the first direct violation, but definitely the most outrageous.
Every crisis, as they say, is an opportunity. Covid-19 is an opportunity to redefine how disability policy works in India. We cannot have an independent department alone looking after the needs of the disabled. After all, disability is an intersectional issue. At best, the department can play two roles. One, acting as a think tank, increasing the knowledge base of the government on issues related to disability. Two, being a connecting agency between various government agencies – addressing grievances and being a watchdog on implementation of standards.
The author, a wheelchair user, is CEO, Nipman Foundation and Founder, WheelsForLife (www.wheelsforlife.in). He can be followed on twitter @nipunmalhotra. Views are personal.