Coronavirus: My Story – hearing the voices of people with disabilities

Too often, people with disabilities are unseen and unheard in their societies – and with measures in place to prevent the spread of Coronavirus leaving many isolated at home, there is a risk that this marginalisation will be compounded.

At times of crisis, we know that people with disabilities are often among the worst affected, facing multiple physical, attitudinal and communication barriers and overlooked by mainstream humanitarian response. Coronavirus has exacerbated many of these barriers, with lockdown meaning many women and men with disabilities are not only unable to go out to work and earn a living, but also unable to access the carers, health services and medication that they need. To fully understand the impact that this unprecedented global situation is having on people with disabilities, and to ensure a better understanding of how to make responses inclusive, it is essential the voices and experiences are heard of those with the best insights into their own situations.

Through our new campaign, Coronavirus: My Story, people with disabilities share their own experiences, in their own words. These eight  short video diaries, made by women and men from Bangladesh, Indonesia, Nepal and Zimbabwe,  provide a snapshot of the challenges being faced and the ways in which  the Disability Movement, for example self-help groups and organisations of persons with disabilities, is playing an essential role in responding to the crisis. Supporting our Coronavirus appeal enables this work to continue.

 “Persons with disabilities are most at risk in this disaster” – Nazmul, Bangladesh

An economic crisis

People with disabilities are often among the poorest in their communities, because of barriers to accessing education and employment but also because of stigma and discrimination. They are more likely to work in the informal sector, which has been devastated by lockdown measures, leaving many with no way to earn a living and at risk of hunger.

Jakir, from Bangladesh, set up his own small shop, thanks to loans from the government and a local self-help group for people with disabilities. But when he was forced to close due to the pandemic, his family was left with no income. “My business was going well but had to shut down suddenly due to the coronavirus pandemic and I am having a hard time. The store has been closed for two months and my savings are finished also. I wasn’t getting any support. Then I received some relief from a grassroots organisation of persons with disabilities and… support from our group when the previous relief item was about to finish. Currently I’m maintaining my life with this support.”

CBM hears similar stories from across the world. Progress from Zimbabwe used to earn an income by tutoring students in her home but this is no longer possible and most of her students do not have the connectivity and equipment to attend electronically. Saputra from Indonesia, who is blind, generated most of his income working as a Shiatsu masseur, but can no longer do this due to social distancing rules. Abu from Bangladesh worked as a market trader; he explains:

“Now I am sitting at home due to the coronavirus pandemic and cannot do anything. I’m facing lots of trouble, as there is no income… I didn’t get any support from government yet. I really don’t know what I will do now! I have no way to survive.”

In some communities, opportunities for people with disabilities are so few that many rely on begging to survive. Timothy, Director of the Association of Visually Handicapped from Zimbabwe, explains “They would themselves as persons with disabilities go out into the streets to beg. Not only the streets but also in public transport systems, that is in buses and trains… Now, in the wake of Covid-19 that is no longer possible.”

With little or no social protection in place, and governments facing huge demands for assistance, there are very few safety nets keeping people from hunger. “Before Coronavirus, we ate fish, meat and eggs every week. But now we are not able to eat those foods due to economic constraints. We are currently at health risk,” says Nazmul, from Bangladesh.

Families like Nazmul’s, who live in flood prone areas, are also unable to protect themselves: “We fight with this disaster every year. We used to take some preparations in groups before dealing with disasters. But now we have no income due to the crisis created by Coronavirus. I am mentally worried about how we will deal with the upcoming flood.”

Many people with disabilities face additional health-related costs, which they are now struggling to meet. For example, Progress from Zimbabwe says: “Our challenge as people with albinism is that we can’t afford to buy sun lotions, especially during this time”.

Health care out of reach

The devastating health impact of Coronavirus itself is well documented, but for many people with disabilities and long-term health conditions, the associated effects of the pandemic are also damaging to health.  Many people who need regular medical treatment or rehabilitation are struggling to access these vital services. Sinja from Nepal explains:

“My physical health is one of the most difficult things I’m facing right now. Before this lockdown, I used to go to hospital for regular physiotherapy but with lockdown I am not able to continue with that.”

Working with the National Federation of Disabled Nepal, Sinja has had contact with many others who are extremely anxious about the absence of medicines or equipment. “And during this time what I’ve also found that it is the hunger, it is the risk of infection, it is also the lack of medical supplies, medical items, such as medicine, anti-hemophilic factor medicine that is completely out of stock in the country and the urine bags, CIC pipes, sanitiser, Dettol, sanitation items. When those are in shortage, I think that panics and that affects people more than the Covid-19 itself.”

Lack of public transport and loss of income also make medical treatment inaccessible for many. Jakir from Bangladesh explains: “Other persons with disabilities like me are having hard time also… They don’t have enough money to go for medical help if they get any sickness. There is no transportation available to go to doctors or hospitals, roads are closed, which is making it difficult to get proper medical treatment.”

Mental health and wellbeing

Most of us will have experienced some level of fear and anxiety during the global pandemic. But the poverty, isolation and exclusion faced by people with disabilities puts them among those at greatest risk of experiencing serious mental health issues without access to support services and advice.

People with existing mental health conditions are facing particular challenges during this pandemic. They may not be able to access regular medication or psychosocial support and social isolation can exacerbate existing conditions. “The impact of social distancing and lockdown, which forces us to stay at home for a long time, surely gives us loneliness, bored, confused about what to do and feeling afraid of being affected by Coronavirus,” explains Saputra from Indonesia.

The economic impact of the crisis is also causing increased fear and anxiety. Abu from Bangladesh, tells us: “As I cannot do any work now, I cannot imagine, what our future will be like.” And for those who are bereaved during the crisis, the inability to mark a loved one’s death with other family members increases distress. Tekraj, from Nepal, lost his mother recently. “Due to the lockdown, we are not able to follow the complete death rituals according to our culture…”

Facing increased risk

There are various factors that can put people with disabilities at greater risk of contracting Coronavirus, and some will be at higher risk of becoming seriously ill due to existing health conditions.

For people who rely on assistance to carry out daily activities, social distancing may not be possible. Saputra from Indonesia explains:

“My challenge as a blind person during this outbreak of Coronavirus is looking for assistance to help with daily activities that can’t be done alone and need someone’s help”

Timothy from the Association of Visually Handicapped in Zimbabwe also highlights the difficulties of social distancing for people with visual impairments. “These are people who hold their hands in the case of persons who are blind and help them along. Or they push them in their wheelchairs. That defeats the whole purpose of social distancing and that exposes both the person with a disability and their assistant a lot. Because the social distancing naturally cannot be affected.”

People with restricted mobility or visual impairment may rely more on touch or physical contact when getting around, for example use of handrails. This means that handwashing is particularly important; but the cost of soap or sanitiser means that people living in poverty may not be able to afford these vital supplies. Timothy from Zimbabwe sets out some of the shortages their members are facing: “We are talking of the gloves. We are talking of the masks. And we even talk of the sanitisers and the pieces of soap which they would use to sanitise themselves with running water and soap. And these have become very expensive… This is a very difficult situation for persons with disabilities who don’t have anything to begin with.”

Ensuring no-one is left behind

The Coronavirus: My story video diaries show some of the ways that people with disabilities and their representative organisations are actively participating in the response to the pandemic. CBM has supported the establishment of self-help groups for people with disabilities around the world, and these have provided a vital safety net, providing food and loans to people like Jakir in Bangladesh.

Timothy in Zimbabwe tells us that many of their members are turning to the Association of Visually Handicapped for help: “We are inundated as an organisation with calls from the disability population who are at the very edge of starvation and they are desperate for food… The challenge is that we [DPOs] have to bring to persons with disabilities food, PPEs and work out some Covid-19 response mechanisms, so that persons with disabilities are best protected.”  

CBM is committed to working in partnership with disabled people’s organisations in formulating our humanitarian response, to ensure that people with disabilities are not simply passive recipients of help, but are actively involved in the process of decision-making and delivering assistance.

As Sinja, from CBM partner the National Federation of Disabled Nepal says “At this time, it is more important for us to coordinate and work together and I think solidarity is the key at this moment.”

Go to the Coronavirus: My Story campaign (open in new tab).

Find out how you can support our emergency coronavirus appeal (open in new tab).

Image: (L-R) Sinja, Progress, Nazmul, Abu, Saputra, Timothy, Jakir, Tekraj.