Samuel Mani, a shopowner with cerebral palsy, used to enjoy feeling the breeze when he would manoeuvre his wheelchair through the bustling streets of New Delhi. The 42-year-old’s disability affects his movement and coordination. But that hasn’t stopped him from living an independent life. Till now.
Mani runs a shop in Safdarjung in New Delhi, where he sells computers and electronic devices. His wife, Meenu, also has cerebral palsy.
But, ever since the Indian government announced a brutal 21-day national lockdown to control the spread of the novel coronavirus, Mani has felt a sense of helplessness and worry. “I rely on my father, who is 72, for daily chores,” he tells VICE. Mani’s father, who lives a floor below Mani’s apartment, comes over each morning to bathe and dress his son.
“Over the last week or so, I have been feeling guilty and worried that my father has to come every day to help me out, especially when the government has advised citizens to follow social distancing guidelines. It puts all three of us in danger. That bothers me but I have no other option.”
Apart from that, the couple is facing roadblocks at several other places too. The ongoing lockdown has led to the shopkeeper they depended on for essentials, refusing to home deliver the goods. “We are helpless,” says Mani, who ultimately sought the help of a disability rights activist to get the essentials.
While one of the most important measures to avoid the spread of COVID-19 is social distancing—something that the lockdown enforces—there are groups of people for whom this is not a possibility. People with disabilities and chronic health conditions, who are anyway one of the most vulnerable segments of the population when it comes to the novel coronavirus, are also those for whom social distancing measures can’t be enforced since many depend on their caregivers and support workers on a daily basis. And while having a disability by itself may not put someone at higher risk from coronavirus, many disabled people have specific disabilities or chronic conditions that make the infection more dangerous.
The World Health Organization (WHO), which is at the forefront of the pandemic response, has acknowledged that people with disabilities are at a greater risk amid this pandemic, even discussing the risk faced by those with disabilities during a livestream on TikTok. In India, Satendra Singh—a doctor at GTB Hospital in Delhi and disability rights activist—sent a letter to the Ministry of Health & Family Welfare and Ministry of Social Justice & Empowerment on March 22, telling them that the advisories on the pandemic don’t cater to people with disabilities, according to a copy of the letter seen by VICE.
Following Singh’s letter, the Department of Disabilities asked state governments to make information related to coronavirus in accessible formats for disabled people through audio tapes, videos with subtitles and sign languages, according to a Ministry of Social Justice & Empowerment press release.
About 2.2 percent—26.8 million, of India’s population—suffers from disability, according to the 2011 census data. Of this, more than a fourth have movement-related and mental disabilities. India’s Rights of Persons with Disabilities Act, passed in 2016, included a recommendation that proposed to make public buildings accessible to the disabled. A year before that, India’s prime minister Narendra Modi launched the Accessible India Campaign that set a target of converting at least 50 percent of government buildings into accessible buildings for people with disabilities. But only 3 percent of buildings achieved that goal by July 2018, according to the Department of Empowerment of Persons with Disabilities.
Apart from buildings in India, footpaths too don’t have ramps, a large percentage of public transport is inaccessible to the disabled, and public buildings and railway stations don’t have bathrooms meant for them. COVID-19 quarantine centers have come under criticism for not having lifts, let alone accessible toilets and other disabled friendly features. Challenges are at multiple levels but the lack of inclusivity in government policies is the first and the most important challenge, says Dorodi Sharma, an Inclusive Development Project Officer at the International Disability Alliance. “Public information by the government does not take cognisance of the disabled and information is not made accessible to them,” she added.
Singh echoes Sharma’s thoughts about the “complete lack” of inclusivity and information accessibility. “In the hierarchy of the most vulnerable, people with spinal cord injuries or those depending on caregivers need additional care, especially in times of social distancing,” he tells VICE.
Virali Modi, who describes herself as a disability rights activist in Mumbai, voiced her situation through a tweet on March 24, asking the Mumbai police and health ministry for their help.
In Modi's case, a team of cops reached her place the next morning, issued letters to her domestic help and driver so they could continue working amid the lockdown and gave her their contact details to reach out to in case of emergency. While this proactive action is definitely commendable, there is still no system in place to address the needs of the community at large.
According to a 2018 report by the United Nations, awareness of health services among persons with disabilities is extremely low in India and only 49 percent have even heard of any general health services. In the same report, it said that India ranked third lowest among 56 countries in public spending on social programmes for persons with disabilities as a percentage of gross domestic product. To top it all, public health crises are not equal-opportunity events: the poorest, most marginalised and disabled are generally the worst affected, while the wealthy, connected and healthy are able to cushion themselves.
As the lockdown continues, major problems have emerged due to the lack of a tight system in place—from doctors not having adequate protective gear to migrant workers having to walk hundreds of kilometres to get home and face humiliation and abuse on the way. The lockdown has come with its own set of issues for Arsala Tariq as well—a management student at New Delhi’s Jamia Millia Islamia University, who is partially blind. “The trains and the buses closed down with the lockdown and so, I wasn’t able to go back to my home in Bihar,” he says. “I searched for an attendant, but I could not find one as it is a tough time for everyone.”
Tariq’s university has now moved to online classes, but such measures do not factor in the blind students. “I am not used to the laptop and online learning. I have to find somebody every time to log in. I have trouble following online lessons.”
But Tavanpal Singh, who works with a private company and has locomotor disability, has another perspective on the lockdown. “The lockdown has been a boon in a way,” he said. “If it wouldn’t have been put in place I would’ve had to ask someone to pick me up and drop me in a cab so I could go to work. That would’ve made social distancing impossible.”
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