Coronavirus' under-reported victims: people with disabilities

As the coronavirus continues to rage across the world, with more than 6 million confirmed cases and counting, there is one group disproportionately affected by the pandemic who are too often overlooked: people living with disabilities.

The UN estimates that about 1.3 billion people " or 15 per cent of the global population " fall into this category and while useful, those of us working in the disability space know this not to be an accurate representation of the true number.

Only 21 countries collect disability data, definitions of disability vary, and for every documented individual, there are countless others who aren't.

As a rule, people with disabilities face discrimination across all areas of life. They are less likely to be able to access education, health care and employment, and more likely to live in poverty, suffer higher rates of violence, neglect and abuse. They are also less likely to be actively involved in their communities.

Members of We Are One India, one of the groups that performed in the True Colors Festival's 'Stand By Me' video featuring 46 artists with disabilities from 14 countries,. Photo: Handout alt=Members of We Are One India, one of the groups that performed in the True Colors Festival's 'Stand By Me' video featuring 46 artists with disabilities from 14 countries,. Photo: Handout

I have many friends in this community who have risen above all the ways that governments, schools, communities and potential employers have failed them, but this doesn't change the fact that their lives have been unfairly and unnecessarily hard.

Now superimpose the coronavirus pandemic and everything that has come along with it onto this reality, and what emerges?

An "intensifying [of] these inequalities", according to UN Secretary General Antonio Guterres, speaking at the May 6 launch of a policy brief calling for a disability-inclusive recovery and response to the pandemic, in which he said that people with disabilities are among the hardest hit.

The stark reality is that they are at much higher risk of being unaware of public health guidance; experiencing psychological distress resulting from safety and containment measures such as lockdowns; and developing life-threatening symptoms if they are infected.

Protective face masks designed with a partially transparent area can help allow people with hearing disabilities to read lips. Photo: Reuters alt=Protective face masks designed with a partially transparent area can help allow people with hearing disabilities to read lips. Photo: Reuters

If health alerts, advisories and hygiene measures are not accessible to all " using sign languages, captioned videos, high contrast design, large print and alternative forms of text, for example " then entire communities are left in the dark. Imagine seeing but not understanding the tide of images of death and suffering on TV; imagine the fear and mental anguish.

Social distancing and stay home notices mean it's harder for people with disabilities to access medical supplies and receive the home support and basic services they need, a sure cause of anxiety, while daily interactions with the outside world also end " leading to disorientation and stress, and a greater sense of isolation and loneliness. These are linked to increases in the incidence of heart disease, dementia and other conditions.

People all over the world became crazed at the thought of not having enough toilet paper " imagine if you lived with the fear of not having the support you needed to retain your dignity and be helped to the toilet, or to eat, or take your life-saving medicine.

Many people with disabilities also have underlying conditions or compromised immune systems, which make them much more vulnerable to infection, more severe symptoms, and death if they are exposed to the virus.

In a recent study of 30,000 people aged 18-74 who tested positive for Covid-19, researchers at Syracuse University and the State University of New York Upstate Medical University found that those with intellectual and developmental disabilities were about 1.6 times more likely to die from the disease.

While the reasons were not investigated in the study, it was highlighted that people with such disabilities have a higher prevalence of circulatory, respiratory and endocrine disease across all age groups. A higher percentage also live in group institutional settings, making safe distancing a near-impossibility.

But there is yet one more "hidden" reality. People with certain disabilities have been deprioritised for emergency medical care because of unforgivable assumptions about the link between disability and quality or worth of life. This adds another layer of fear to anyone, especially of a certain age, who falls into this category and is cognisant of it. The first time I watched a live panel discussion organised by the International Disability Alliance, I heard the anguish of those relating examples of people making this assumption and wept with them.

Let me just state that I'm not casting blame on any organisation or government. It is all too easy to criticise when you are not in the hot seat. This is unprecedented and everyone is doing their best within countless constraints.

So what's to be done in this impossible situation? From where I stand, a significant part of the answer lies in raising public awareness. Not in an instructional way because we've stopped listening, but in a way that engages emotionally, makes us realise the strength and value of this community " it's a sad reality that we even have to do this, but that's another story " and makes us realise that this could be me or any one of my loved ones, my friend, my neighbour, my colleague. I hope that's the key.

Audrey Perera is executive producer of the True Colors Festival in Singapore, which creates opportunities to embrace diversity in disabilities, genders, generation, languages and nationalities through the performing arts. On June 3, it released a music video in which 46 artists with disabilities from 15 countries and areas perform an updated rendition of "Stand By Me", the classic Ben E. King hit. The video may well be the first to feature such an international line-up of artists with disabilities during the Covid-19 pandemic. It can be seen at: https://truecolors2020.jp/en/standbyme/

This article originally appeared on the South China Morning Post (SCMP).

Copyright (c) 2020. South China Morning Post Publishers Ltd. All rights reserved.