With COVID-19 continuously spreading within the general population across India, the risk related to the virus is increasing as these are new to the human immune system. But a group that faces additional risks and consequences, as well as anxieties, is people with disabilities, their immediate caregivers and/or people with chronic illnesses.
My mother, 74, who is also my prime caregiver, is scared not for herself. She is more worried about who would be there for me if she falls prey to the virus. And I, a woman with a disability and a wheelchair user, am fearful about what if I got the infection? Whether I would be able to get disability-friendly quarantine facilities with wheelchair accessible washrooms? Would there be trained professionals and caregivers who are trained in managing disability-specific issues when I am put in isolation?
My mother and I are not the only ones who are apprehensive and unsure about the State’s preparedness regarding disability-inclusive disaster management in times of such public health crisis. There are thousands and lakhs of disabled people, their caregivers and chronically ill people in our country who would be going through the same sense of insecurity and tons of unanswered questions in the wake of this pandemic.
An emergency may change the abilities and independence of a person with a disability. The natural anxiety that persons with disabilities might have about this viral outbreak is likely made worse every time we listen to the news reports and official statements but remain uninformed about the disabled-friendly facilities available to them if a need for treatment or screening tests arises.
According to the 2011 Census, there are 2.68 crore persons with disabilities in India. As the citizens of this country, it is our right to know what we would do if our support workers are sick, or need to self-isolate, as well as if we would be able to get extra support, and how to access that extra support if we are required to remain at home at this hour of a public health crisis.
The COVID-19 pandemic has left everyone nerved. People are taking steps to control the outbreak and preparing to get through whatever may come of it. The government is taking all steps to prevent its spread, and the scale of interventions has been increasing in alignment with the evolving situation in India. We are sending special planes to evacuate hundreds of Indians from different countries. Media, too, is playing a very significant role in bringing about awareness and informing the general public about the presence of available medical facilities.
But isn’t it critical to educate and provide training not only to people with disabilities and their caregivers, but also to emergency planners, first responders, and other members of the community who play an important role in making sure that people with disabilities are also included in emergency preparedness and response plans in the present scenario?
As members of the disability community, we remain completely unenlightened and unknowledgeable about the tools and resources that the State has developed to reach out to persons with disabilities, which in itself is a heterogeneous group, with specific needs of accommodations. I am quite apprehensive of the fact that whether even for once, have we, the persons with disabilities, been considered as a group while formulating contingency plans to fight against this deadly virus.
At a time when the pandemic panic is gripping everyone, persons with disabilities deserve to know where to get essential supplies to keep themselves safe, such as hand sanitizer, masks and sterilizing equipment, particularly when they are running low and if they need to self-isolate. For people who rely on others for daily services or medical care, this workforce shortage could become life-threatening. It is essential to include alternative caregivers and stockpiling in their preparedness plan.
People with disabilities must be included in all plans to manage the current COVID-19 outbreak with the objective of leaving ‘no one behind’. We must be involved at every stage of this public health crisis so that we can manage our risk of catching the virus, and make sure we can keep getting the support as and when we need. All communications about COVID-19, including the national campaign to fight against Coronavirus, need to be in an accessible format for people with disability.
Many people with certain disabilities might be at high risk for the virus. For instance, those who are facing post-polio syndrome may show drastic changes in lung function and are more prone to get pneumonia. In muscular dystrophy, progressive weakness of respiratory muscles can result in varying degrees of breathing difficulty. Respiratory impairment following spinal cord injury (SCI) is more severe in high cervical injuries and is characterized by low lung volumes and a weak cough secondary to respiratory muscle weakness.
Schizophrenia is also associated with poor lung function. We may have to be kept in isolation for some time. Social distancing can make people sick and all the more depressed. We need to turn to creative means to stay connected. Friends, families and volunteers can look for ways to spend time together, either through a FaceTime or WhatsApp call, through collaborative gaming or just by using the telephone. The government will need to provide food, medicine, and support for the lonely, fearful, or depressed.
For persons with disabilities, inequity has always created gaps in preparedness against disasters. Persons with disabilities in India remain uninsured and/or under-insured. We have limited access to essential health services. So we face additional barriers. Consequently, we have reduced access to healthcare. We may stay away from hospitals even as we remain in the community where the virus continues to create havoc. Why can’t the government think of providing accessible tele-health services to the people with disabilities who remain house-bound?
Viruses don’t discriminate. The nature of this pandemic puts people of all ages, both the sick and healthy, at risk of contracting the illness and even death. Preparedness saves lives and lessens chaos, suffering and economic destruction. It requires commitment, action and a little money. Being prepared makes sense for everyone, and it IS possible to include. This is especially true for people with disabilities, who are at greater risk than the general public of death, injury and loss of independence during a disaster.
Rather than “What If?” it would be great if we get answers to the questions like “Where?”, “How?” and “What kind of?” facilities are available for this largest minority group, i.e., persons with disabilities, during these trying times.