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Why The Pandemic Has Been A Heartbreaking Time For People With Disabilities

Posted: January 12, 2021

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In an ongoing disaster like a pandemic people with disabilities (PWDs) may be impacted more severely as compared to the non-disabled population.

Let us look at the real life stories of some persons with disability and their caregivers during the pandemic and related lockdown, with whom I spoke about this.

*Sukriti lives in Delhi with her husband who has a locomotor disability, a pre-teen daughter who has a learning disability and her octogenarian father-in-law. The disability pension for her husband and senior citizen pension for her father-in-law were stopped for several months during the pandemic. She worked in a neighbourhood salon which was shut due to lockdown, so she lost employment and whatever little extra income they had as well went away. Ultimately a local NGO gave her a sewing-machine and training to stitch masks, some others have helped with rations and medicines, for now they are somehow alive and have a roof on her head, but the income is scanty and they stare at a bleak future ahead.

A difficult time for people with disabilities

Estimates suggest that approximately 2.2% of India’s population lives with a disability. However, the World Health Organisation has reported that about 15 % of the global population lives with a disability and about 80 % of these are in middle- and low-income countries like India, hence it can be easily assumed that the official numbers in India are clearly underestimated.

PWDs have greater risk of contracting such infections due to hurdles in hygiene routines and access to support and care including formal healthcare during such a global medical emergency.

WHO in its Disability considerations during the COVID-19 outbreak lists several protocols and requirements specific to PWDs including financial and other kinds of logistic support to not just them but also the “families and caregivers who are part of the casual and self-employed disability workforce.”

Caregivers who also suffered

The pandemic not only led to lockdowns that further limited movement and social interaction for many living with disabilities, it also directly impacted the employment opportunities for PWDs, making them extremely limited and in many cases almost non-existent. In some cases, caregivers also had to make the tough choice between their work and offering full time care to a PWD in the family.

Deepika who is the primary caregiver of her minor daughter living with cerebral palsy had to resign from her fulltime job because the nature of her job could not be work from home for long. The caregiver appointed to assist with the child couldn’t come any more so she had to manage everything alone in addition to losing her financial independence, sleep and mental health. The child’s therapy had to be discontinued due to COVID precautions and that led to behavioural changes and more challenges. Though lockdown has ended for others Deepika and her child still remain largely isolated and distressed.

The digital divide as everything moved online was also wider for PWDs. Many of them do not have access to information related to health recommendations. Several others didn’t have the means to work in the new work from home module which wasn’t accessible as per their specific disability. Information in Braille, sign language, easy to read local languages is unavailable and websites are inaccessible. Many students could not access classes due to this and for some even accessing telehealth services was a challenge.

India specific challenges

The Indian government launched an app called Aarogya Setu for Covid-19 response; even made it mandatory for certain services. The app to begin with remained inaccessible for PWDs especially those with visual challenges, more so because most didn’t even have a smartphone. Also, there were questions about the safety of the data and privacy of the app, making it additionally challenging for those who live with a disability.

In places like India any such challenge becomes even more steep because of two factors-

  • Lack of sufficient formal healthcare specific to physical or psychosocial disabilities
  • Limited access to whatever care is available due to awareness, taboo, stigma, lack of finances and digital or formal education.

According to a 2018 NSO survey only 28.8% of Indian people with disabilities have disability certificates. A larger number who lives with undiagnosed or unreported disability, more common in cases of psychosocial disabilities is thus even missing from the ‘official’ figures according to which plans and policies are drafted. Especially the number of people living with a debilitating mental illness with disability certification is extremely low.

In India many PWDs were even “…denied food as they don’t possess official documents such as disability certificates or ration cards.”

Unimaginable hardships

*Geet has schizophrenia. She was managing fine with medicines and working at a local supermarket. Due to the lockdown, she couldn’t get the free medicines she gets from a social organisation in Delhi. Her relapse was so bad that she needed to be hospitalised by neighbours. After being discharged she no longer has a job or a place to live. She now lives at a women’s shelter. She is not fully functional still and the organisation isn’t sure how long they can continue to keep her and many others as they are also financially struggling.

In a recent news report India Spend stated:

“For about 200 million such Indians living with psychosocial disabilities, according to a study in the Lancet medical journal, and for their families, the disruption in essential services like free medication during the lockdown compounded the impact of the COVID-19 pandemic.”

Humanitarian emergencies like the ongoing pandemic has drastically reduced access to specialists and treatment options is limited. The stigma associated with mental health issues may cause reluctance to seek support for both COVID-19 and mental health conditions. People already “restrained” due to accessibility issues are further under an almost imprisonment and no hope.

Other factors of discrimination like gender also come to play a role in the already skewed proportion of access to resources and care, including financial and other support. For instance, women and girls with disabilities face higher risk of sexual violence in India and greater barriers to justice, a 2018 study by Human Rights Watch had found. Women with disabilities also remain more vulnerable to domestic violence and have issues accessing basic products, such as sanitary pads or contraception.

We need better planning and implementation

Several NGOs such as Anjali, Sangati, Evara, and Banyan, several individuals and small groups have tried to fill in the gaps by providing financial assistance, food rations, sanitary napkins, even part-time employment like stitching of masks etc. during the lockdown-induced financial crisis.

The Central government did introduce the Comprehensive Disability Inclusive Guidelines for Protection and Safety of Persons With Disabilities (Divyangjan) During COVID-19 instructing state governments for the same, but the discretionary nature of the guidelines as well as the lack of planned implementation made it largely useless for most.

In India, the population living below the poverty line with severe and multiple disabilities are entitled to receive a monthly pension under the National Social Assistance Programme. But there were huge discrepancies in this.

Ex-gratia payment of INR 1,000 under the Pradhan Mantri Garib Kalyan Yojna over three months in two equal instalments to below poverty line persons with disabilities was also initiated. But this assistance is also available only for people with 80% or more disabilities possessing a disability certificate. Most don’t have a certificate or have “less than the required per cent” of disability but remain vulnerable to neglect and destitution. This is truer for people who live with invisible disabilities as well.

The founder of Evara Foundation has issued a statement in this context recently: “Suffering of persons with disabilities during lockdown and Covid-19 pandemic was evident from a nationwide study conducted by Evara Foundation. Our study found that nearly 75% of PwD are facing emotional challenges ranging from anxiety to depression and suicidal thoughts. The situation has been alarming as nearly 60% of the total respondents were found to have zero income in these trying times. The study also revealed that a large number of job-seeking PwD were shattered because of the cancellation/postponement of the exams/interviews. A significant number of respondents said that they are not getting basic necessities like food/shelter/medicine during these times.”

Poverty and disability as an intersection has been established by several reports and research worldwide, what now needs to be implemented is a social support system that is inclusive, just and effective, especially for PWDs.

*Name changed on request.

Image source: a still from the film Margarita with a Straw

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Pooja Priyamvada is a columnist, professional translator and an online content and Social Media consultant.

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