Sapana Basnet Bista: Covid-19 and the neglect of people with disabilities in communication campaigns
Extensive, accurate, and inclusive risk communication is a must when responding to any pandemic, says Sapana Basnet Bista
The world is now gripped by the scale and speed of the covid-19 pandemic. From the evidence so far, it seems that covid-19 causes more severe symptoms in people with weakened immune systems, older people, and those with long term conditions, which includes people with disabilities. Looking at the evidence from past influenza pandemics we also know that people with disabilities, particularly those with chronic physical and mental health illness who need personal assistance or who live in care facilities, are likely to be at increased risk of contracting the virus because of their circumstances.
The World Health Organization (WHO) and some high income countries have made some efforts to disseminate information digitally that is somewhat accessible to people with disabilities (for example, by using captioning or a sign language interpreter). However, what WHO and many countries around the world have failed to fully account for is how the current generic guidelines on covid-19 prevention and social distancing may have more damaging repercussions for people with disabilities.
Countries across the world have launched large scale public health campaigns through social media, newspapers, radio, television, and billboards. Extensive, accurate, and inclusive risk communication is a must when responding to any pandemic. Despite that, there has been an evident gap in risk communication that is inclusive of people with disabilities and accessible to them. Many commentators, for example, have pointed out that there has been very little information about how to protect yourself if you are part of a vulnerable group or have a disability.
A successful, inter-organisational collective response to any major event depends heavily on the ability of local communities to access and exchange accurate information. When this is lacking, it can lead to panic and fear, compromise individuals’ resilience, and directly affect the actions that individuals take to prevent illness or while in recovery. Risk communication during emergency events has historically been reported to be inaccessible to people with vision and hearing loss, as well as people with cognitive limitations or low literacy levels, resulting in them not receiving information and being able to prepare contingency plans. It is therefore crucial to have timely public health warnings or information on preventative measures in accessible formats for vulnerable groups across all the socioeconomic spectrum and their service providers.
People with disabilities have daily living needs like everyone else, including access to food, healthcare, and education. However, fulfilling these needs is often challenged by physical, economic, environmental, and societal barriers, leading to more people in this group having to rely on family or caregivers for support. As the outbreak evolved, guidelines have too often been unclear about how the social distancing measures and self- isolation work for people with mobility and intellectual disabilities who rely heavily on paid or unpaid caregivers. The death of a Chinese teenage boy with cerebral palsy while his father, and sole carer, was in quarantine presents us with a painful instance of the harmful consequences of overlooking this dimension of social isolation.
The mental health impact of social distancing and its disruption to essential daily support for this population group has yet to make enough of an appearance on the agenda. Moreover, how does self-isolation within family homes work if the caregivers are elderly parents or other family members? Despite the endless questions, there is very little advice from governments on these points, and what guidance is available is fairly generic.
People with disabilities already face healthcare disparities globally, and with the majority of people with disabilities residing in low income, low resource settings, there is an even greater need for information and guidelines that are inclusive of this population group across different contexts. Special attention must be given to low and middle income countries where prevention, preparedness, public health, political leadership, and people’s capacity to respond is much more fragile.
If our response to the covid-19 outbreak is to be inclusive and not perpetuate existing health inequalities, it is important to incorporate disability inclusion analysis in all aspects of governments’ risk assessments and responses. It is equally important to consult organisations that represent disabled people in decision making and to take measures that preserve their rights and dignity, while providing health advice and services.
As the virus has spread, measures to reduce the risk of exposing those who are at high risk has been key to individual and societal responses to the pandemic. WHO has been clear in calling for all countries to activate and scale up their emergency response mechanisms and to communicate with their people about the risk of the virus and protection measures. However, across countries what has been less clear is how people with disabilities will cope during this pandemic with very limited accessible information, acutely disrupted care, and a high risk of the virus being transmitted by their caregivers.
Sapana Basnet Bista is a PhD researcher at the Public Health Institute, Liverpool John Moores University.