Two weeks of the nation-wide lockdown are over. And, in these two weeks, Anubha Mahajan, a dentist and social activist based in Gurgaon, Haryana has had two episodes of excruciating pain attacks. One of these attacks, which is associated with severe spasmodic movement leading to ‘locking down’ of her body muscles, lasted for more than 24 hours till medical help arrived at her home after getting permissions from three different police stations and the housing colony where she resides.
Mahajan lives alone with a help. For the past six years, she is living with a rare disease — complex regional pain syndrome, a chronic pain condition caused by damage to, or malfunction of, the peripheral and central nervous systems. This health condition is not recognised as a disability under the Government of India’s Rights of Persons with Disability Act, 2016, which considers only 21 types of disabilities.
“Officially, my condition is not recognised as a disability in India, but it would fit into the category of locomotor disability,” Mahajan told Gaon Connection. “I live in pain almost all the time, but during severe pain attacks, I need to be rushed to the hospital in an emergency and intravenously administered pain killers and other medications,” she added.
Since March 25, the country is under a nation-wide lockdown for at least 21 days (expected to be increased). Access to medical care in lockdown, with borders sealed, transport shut and hospitals over-burdened, has become a challenge, more so for people with disabilities who have special needs and are dependent on caregivers.
As per the World Health Organization’s World Report on Disability, 15 per cent of the world’s population lives with some form of disability.
Back home, in India, as per the National Statistical Office (NSO) survey report released last November, of the total 1.3 billion population of the country, people with disabilities constitute 2.2 per cent — 2.3 per cent in rural areas and 2 per cent in urban regions. The Census 2011 also puts disabled people’s population at 2.21 per cent.
However, experts in the disability sector claim this is an “underestimation” and “there is an urgent need to improve the disability estimates as well as an opportunity in the upcoming decennial Census of 2021”.
“The figure of 2.2 per cent people with disabilities in India is an underestimation. If all kinds of disabilities are included, as is the practice in the developed countries, India’s disabled population would be 7-8 per cent,” Nipun Malhotra, chief executive officer of Nipman Foundation that works in the area of health and advocacy for persons with disabilities told Gaon Connection.
This 7-8 per cent comes to about 100 million disabled people in the country, who mostly remain invisible and live on the margins of the society. Lockdown has multiplied their woes.
“Lockdown is important and we are not against it. But, we need to recognise and understand the challenges faced by people with disabilities,” said Malhotra, who has arthrogryposis, a rare congenital condition characterised by multiple joint contractures.
“The response to coronavirus pandemic is based on social distancing and isolation to break the chain. But, most people with disabilities are dependent on others to meet their basic needs and carry out the daily chores,” he said.
For instance, because of his medical condition, Malhotra cannot wash his hands without the help of a family member or his caretaker.
“People with disabilities are dependent on their caretakers. Because of lockdown, these care providers are unable to visit and need special curfew passes to move around. There are people with disabilities who have been stuck on their beds and getting bed sores,” he said. “Lack of transport means disabled people are unable to reach hospitals, which can be life-threatening in case of an emergency,” he added.
Thirty-two-year old Abhishek Anicca is a poet and researcher pursuing his M.Phil on masculinity and disability. He has scoliosis (sideways curvature of the spine) and chronic urinary tract infection, and lives alone in a gated colony in East Delhi.
“Because of my medical condition, I have lost strength in both my legs and use a stick to walk. But I cannot walk for long,” Anicca told Gaon Connection. “When the nation-wide lockdown was announced, we only had four hours to make arrangements — groceries, medicines, cash and passes for caretakers. I could not stock up my kitchen and had limited cash with me,” he added.
Anicca suffered as no vendor was ready to home deliver products and security guards were not letting any outsider inside the complex. “Imagine a disabled person has to carry huge bags and climb upstairs. I am managing to clean the house and cook on my own, but it is extremely taxing,” he said.
“Friends offer help but had I know about the lockdown in advance, I could have planned well. No one wants to depend on the pity of others. Surprises do not work well with people with disabilities,” he added.
Abha Khetarpal is a polio survivor and lives with her 74-year-old mother in west Delhi. She is the founder of Cross the Hurdles, a non-profit working with people with disabilities, and for her contribution towards the disability sector, she was honoured with a national award by the President of India in 2016.
“People with disabilities are a vulnerable community and high-risk category for diseases and infections, including coronavirus. For instance, polio survivors like me have weak lungs,” Khetarpal told Gaon Connection.
“Disabled people are often considered unproductive towards society. Our fear, which is not unreasonable, is that amid this pandemic as hospitals get over-burdened and there is a shortage of medical supplies, will we be neglected if rationing of medical care [ventilators, drugs, hospital beds, etc] is done in the country,” she said worriedly.
Lockdown has also meant no help and no caretaker for Khetarpal. She is completely dependent on her old mother —- shifting from the wheel chair to her bed and assistance in the washroom.
“I understand lockdown is important and is a necessary evil, but it has impacted the disabled community, including me, in various different ways — physically, mentally, emotionally and also financially. We are falling short of caregivers and domestic help without whom it is difficult for us to manage our daily activities,” she said.
“Neither my mother nor I can afford to fall sick, as we have only got each other to look after us,” she added. To increase awareness about coronavirus disease, she has prepared a series of info-sheets on ‘COVID-19 and disability’.
Anicca raised similar concerns as Khetarpal. “Disabled people’s immunity is already compromised and in such a scenario, we are at a higher risk of catching infections. This also takes a mental toll,” he said.
“Many people are not getting medical help right now on time who live with a disability or chronic [long-term] illness. How will we manage if things get even worse?” wondered Mahajan.
One possible solution, as per Malhotra, is to earmark separate hospitals/health facilities for coronavirus treatment and other diseases. “This is dependant, of course, on the amount coronavirus spreads vis-a-vis India’s medical capacity. However, this would ensure other patients and vulnerable communities do not suffer. We could also look at the possibility of doctors making home visits, or consultations via video chats for regular treatment so that people with disabilities do not suffer,” he said.
Disabled people have special needs and those needs must be addressed even during a pandemic.
Keeping this in mind, three days before the nation-wide lockdown, Doctors with Disabilities: Agents of Change, a pan-India organisation of health professionals with disabilities, wrote a letter on March 22 to the Union Health Minister and the Union Minister of Social Justice and Empowerment, highlighting how the COVID-19 response has been disability non-inclusive.
In the letter, Satendra Singh, associate professor of physiology, University College of Medical Sciences & GTB Hospital, Delhi said advisories issued by the Government of India do not cater to health professionals with disabilities, and persons with disabilities.
“People with blindness and deafblindness depend heavily on touch and social distancing can be challenging for this section. However, neither the National Institute for the Empowerment of Persons with Visual Disabilities, Dehradun, nor the National Institute for Empowerment of Persons with Multiple Disabilities, Chennai has any guidelines on this,” reads the letter.
After a hue and cry, the nine national institutes associated with people with disabilities have started putting out information on their website about coronavirus and its safety aspects. But a lot more is required to meet the needs of 100 million disabled people.
“The institutes are mostly scanning directives from the ministries and putting them on their website. Visually impaired people cannot read them. They use special software in their phones to access information. The uploading word document will be more useful as that can be accessed through phone software used by blind people,” said Singh. He is also an advisor to the state commissioner for disabilities, Government of NCT of Delhi.
Also, media advisories issued by the Union Health Ministry need to be inclusive of people with disabilities so that they get the right message and information.
“Correct and accurate information is always empowering. Barriers need to be identified and removed for the safe access of medical services. The government agencies need to ensure the availability of accessible transport and physical accessibility at health premises so that morbidity and mortality could be minimised,” said Khetarpal. Healthcare providers need to ensure that decision-making processes are guided by human rights standards, she added.
Singh makes an important point: “Disability is not inability. And, the only way to address the concerns of people with disabilities is to give them representation in policy level and decision-making positions.”
