Information accessibility during the COVID-19 crisis
Information accessibility is a right under that UN Convention on the Rights of Persons with Disabilities (Article 21) and is an area protected by the Disability Discrimination Act in Australia. Yet in the face of the COVID-19 crisis, the immediate reality and implications of this right have never been more apparent for people with disability: having access to good quality, up-to-date information in accessible formats is quite literally a matter of life and death. Dr Ariella Meltzer (@ariella_meltzer) from the Centre for Social Impact, UNSW Sydney, examines some questions about what providing accessible information in such a crisis means.
As someone with a long-time interest in information accessibility, I started to compile a list during the early days of the COVID-19 crisis of information on the virus that claimed to be accessible to people with disability. Many people with disability are already living with complex health needs, which mean that they are at risk of severe effects from the virus. Prejudiced judgements of their quality of life also mean that many people with disability are at risk of being deprioritised in COVID-19 treatment, especially if there is competition for scarce medical resources. Further, many people with disability are socially isolated and are subjects of complex service systems outside their control. In these systems, the very structure of service provision can put people with disability at risk of greater exposure to the virus, for example, in congregate care settings or if support workers go from home to home of clients.
All of these factors mean that information accessibility is of key importance to people with disability if they are to protect themselves from what is happening with COVID-19 right now. Information accessibility is a right under that UN Convention on the Rights of Persons with Disabilities (Article 21) and is an area protected by the Disability Discrimination Act in Australia. Yet in the face of COVID-19, the immediate reality and implications of this right have never been more apparent: having access to good quality, up-to-date information in accessible formats – such as Easy Read/Easy English, Auslan and/or ‘social stories’, among others – is quite literally a matter of life and death. Without knowing what to do, where to go for help and what the rules are, people with disability, who are already at greater risk from the virus, may be in serious and very imminent danger.
In compiling the list of accessible information on COVID-19, I have been impressed by the amount of accessible resources that are now available. I do not believe that so many would have been when I started my interest in information accessibility a decade ago.
Yet as I have compiled the list, I have also begun to ask new questions about what providing accessible information in such a crisis means. The risk of providing information in accessible formats is that it becomes a ‘tick-a-box’ exercise in inclusion; without proper thought, design and planning, accessible information can become tokenistic, a way of saying that inclusion and accessibility has been ‘done’ without thorough consideration of how it will be received on the ground. In the fast-moving crisis like COVID-19, this ‘tick-a-box’ approach has however never been less appropriate.
In light of COVD-19, there are a myriad of new questions that need to be considered about what good provision of accessible information looks like in this kind of situation. Here are a just a few questions below that I have been thinking about.
How quickly does accessible information come out? Within a few days of the COVID-19 situation becoming serious in Australia, I started to see disability advocacy organisations putting out Easy Read information. The Growing Space put out an early resource, as did the NSW Council for Intellectual Disability and several others. This was very useful and reassuring to see. While the NDIS also put out some early information about implications of COVID-19 for its services, it was not until almost two weeks later that that I saw a more general government department-branded Easy Read resource become available online. While the Australian government has been criticised for their lack of a timely public health campaign on COVID-19 in general, more official information was available earlier in standard information formats for the general population. The timeline should be the same for the accessible information – particularly in a crisis that has disproportionate impacts for people with disability.
Which accessible formats are covered, and why? Overwhelmingly, most of the accessible information that has been produced about COVID-19 has been in Easy Read/Easy English format. Auslan resources have also been produced, but are a distant second in terms of quantity. Other formats – such as ‘social stories’, entirely pictorial (wordless) information and images for users of alternative and augmentative communication systems – have only been available very rarely, and not necessarily from Australian-based organisations. This raises a question about which accessible formats are covered and why. It is impossible to know the answer. An optimistic assessment would say that those most commonly available are what there is more of a market and need for, however I fear it is also about what there is time and resources to produce, and which are seen to be easy targets for claiming that inclusion and accessibility have been ‘done’. A thorough approach using multiple formats has never been more important.
To what extent is accessible information kept up-to-date? One of the risks of producing accessible information is that one document is produced and then it is considered ‘job done’. However, in a fast-moving crisis like COVID-19, one accessible document cannot be enough, because the information – what is happening, what we know, the level of risk and the rules we need to abide by – keeps changing. Only a minority of those producing accessible information are however continually updating their offerings as the COVID-19 situation changes and people’s information needs change. Access Easy English has provided many updates, including after each announcement of new social distancing rules by Prime Minister Morrison. Expression Australia has also provided regular updates in Auslan. Other organisations, such as IDEAS and PWD Australia, have included accessible information among their regularly updated COVID-19 information hub pages, where there is a mixture of information in accessible and standard formats. The work by these organisations show the importance of accessible information being kept as up-to-date as that which the rest of the population has available.
Is only the baseline information covered or the same variety of sub-topics that others receive? Another risk of producing accessible information is that only the most basic set of information is covered and that many of the sub-topics are left behind. While many accessible formats, including Easy Read/Easy English, require only the key points of information to be covered in any one publication, this does not mean that people who use this information are not interested in different aspects of what is happening. A few organisations have led the way by publishing more than one accessible document about COVID-19. Access Easy English has published many different documents including explainers on the virus and hand washing and summaries of the various social and health rules that have been announced. Similarly, NSW Council for Intellectual Disability has published not only an easy explainer about COVID-19 but also separate documents about how to maintain one’s mental health during this period and about rules for staying home. The Growing Space also has a page full of resources on different topics. When set against the rolling live-coverage that the mainstream newspapers and TV news reports have been showing, this variety of information seems very sensible, useful, practical and needed.
How, and by who, is the information produced and disseminated? In the vast majority of cases, provision of accessible information on COVID-19 has been done by specialist information access services or disability advocacy groups. On the one hand, this seems sensible as these are presumably the organisations with the experience and expertise to produce good quality accessible information and these organisations also presumably have a readership with disability who already trust them and seek information from them. In this respect, they are logical places from which such information can be distributed in an already-scary and unsettling time. On the other hand, however, leaving the production of accessible information to these groups at a time of such critical public health messaging could also be seen as an abdication of responsibility by other information outlets who are otherwise covering COVID-19 and providing health advice. Should news services and governments also be involved in producing such information? There is some government department-branded accessible information on COVID-19, but it came out late and is not as comprehensive as that provided by the specialist information access services and disability advocacy groups.
Who checks the accuracy and quality of the information? Finally, there is also a question about quality control of any accessible information on COVID-19. At a time when good messaging is of critical importance, it is vital that any accessible material provided to people is both accurate in its medical and social information and good quality, in terms of following accessible production guidelines (e.g. using proper formatting, pictures, easy language etc). Without being accurate and high quality, the usefulness of the information is diminished and, at worst, can confuse people or even give them the wrong information. The difficulty is that accessible information is an area that has not ever been regulated or subject to quality control checks in Australia. At the best of times, the quality of accessible information varies – and this matters even more when people’s lives depend on it. Collaboration between producers of accessible information who are well-trained in accessible production guidelines and health experts who can check the accuracy of the medical information included is ideal, but this is also hard to achieve at a moment when time and resources are so stretched.
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There are no easy answers or solutions to many of these questions – but they do identify points for improvement as we move into the months ahead where COVID-19 will continue to affect our lives in unknown ways. Just as so many people consume the rolling live-coverage of mainstream newspapers and TV news reports, people with disability who rely on accessible information need to know that they are also receiving timely, up-to-date, accurate and high quality information on COVID-19 in the whole scope of accessible formats they need and from the variety of outlets who can and should be providing it to them. Without this, there is a great danger that people with disability will not get the information they need to keep themselves safe in this fast-paced and scary time.
Dr Ariella Meltzer is a Research Fellow at the Centre for Social Impact, UNSW Sydney. Her constantly-growing list of accessible information on COVID-19 is available here.