In this contribution to ISRF Bulletin 26, Alison Wilde focusses on the specific challenges communications about Covid-19 created for autistic people and people with learning disabilities.
Two weeks into the first pandemic lockdown, I became concerned about the confusion facing a friend with learning disabilities who had suddenly found themselves to be far more popular in their local community. People who rarely spoke to them began asking for favours such as shopping and collecting trips. In the face of the common experience of disinterest, scorn, and bullying the opportunity to gain the approval of others can be enticing, a quick route to gaining the acceptance so often withheld. I realised that the pandemic had ushered in ample opportunities for new forms of ‘mate crime’, or exploitative familiarity, already a common problem for people with learning disabilities. Within the same week, I spoke to another person with learning disabilities who was facing almost unbearable anxieties about every aspect of their lives, with no clear way forward, and with no clear information to guide them.
With the onset of COVID-19, many disabled people found themselves in a situation where services struggled to provide even basic support. But people with learning disabilities and autistic people were exceptionally high-risk groups in multiple ways—socially, economically, ideologically, and communicatively. Moreover, there are clear health disparities between people with learning disabilities and autism and the general population. Against a background of austerity-related cuts the lives of people with learning disabilities and autism have become even more precarious, and their high levels of risk are borne out in a Care Quality Commission estimated increase in deaths of over 134%.
In the early days of the pandemic, it had already become clear that most people felt overwhelmed with the massive and often contradictory information on COVID-19. Despite considerable efforts by many organisations who assisted disabled people to find ways of meeting people’s needs online, or in other safe areas, it was clear that autistic people and people with learning disabilities were often left behind. The lack of access to technology, weak digital skills, unmet impairment-based needs, underfunding for services, the impact of COVID-19 infections on staffing, and the decline of face-to-face interactions often meant that autistic people and people with learning disabilities had major, yet often invisible, barriers to meaningful support and information. This raised multiple concerns among service providers about the ways information is provided, received, and acted upon during the pandemic.
Simultaneously, there was a cultural tendency throughout 2020 and 2021 to write the deaths of disabled and ill people off as understandable, as they were identified as people with ‘underlying conditions’. The use of this term seems to signify that those with underlying conditions are an accepted form of collateral damage for a society committed to neoliberal forms of governance, and reduced, semi-privatised, and underfunded forms of health and social care. Rather than questioning the political conditions which impose restrictions on the resources and budgets sustaining the lives and wellbeing of its citizens, the language of ‘underlying conditions’ perpetuated and extended the discourse of disabled people as ‘bare life’, making disabled people an exception to the rule of citizenship rights. As Reeve has suggested in general, such positioning places disabled people as external to the ‘meaningful deaths’ of non-disabled (and younger) people, abandons them, locating them in a ‘zone of indistinction’ which ‘represents a state of exception’ beyond ‘political significance’.
Language such as this has meant that disabled people have received the message loud and clear that they do not matter to the general public, the media, or politicians and policymakers. Simultaneously, the support and security provided by health and social care agencies diminished significantly in the early throes of the pandemic, reducing the availability of much-needed help and advice. All of this has generated greater uncertainty, anxiety, panic, and the potential to exacerbate risks to self and others. Although this is likely to be true for many, these difficulties were especially marked for disabled people and others who have unmet communication needs. The failure to meet such requirements is a fundamental contradiction of the first principles of pandemic communications and preparedness, especially the prioritisation of inclusive forms of communication which build trust and ‘dispel rumors’. Instead, the vast range of commentaries on health, risk, care, science, and wellbeing have been frustrating, confusing, and overwhelming for us all and have posed multiple and (largely) unknown problems for people with learning disabilities and autism, especially in choosing which information to trust and follow. From all sides, autistic people and people with learning disabilities have faced new significant difficulties in wellbeing and communications.
As groups of people whose support has often been reliant on face-to-face involvement from and with others to maximise work, social, and personal opportunities, research undertaken in the pandemic has shown that the new conditions of the (post-)pandemic world are likely to lead to exacerbations of disadvantage for people with learning disabilities and autistic people. In the face of many pressing difficulties, including the capacity to meet health, care, social, and food needs, it would be tempting to see the provision of more inclusive communications as a less urgent task, but the early conditions of the pandemic swiftly reminded us that access to meaningful communications is crucial. As key members of the ‘digital underclass’, the sudden move to online service delivery, communications, and many forms of socialisation has increased risks of social isolation and exploitation for autistic people and people with learning disabilities, and often blocked access to services. The danger that new communication needs will remain unmet was always high, especially as there is a marked absence of knowledge and understanding on how autistic people and people with learning disabilities understand and interpret media, and on how they are affected by new forms of communication.
Common themes in pandemic communications for autistic people and people with learning disabilities
Even where health guidance and resources are provided to people, this tends to be instructional rather than explanatory, meaning people with learning disabilities and autistic people are being told what to do rather than why they need to act, a strategy which is usually counterproductive in public health campaigns. In our own research, there was almost unanimous frustration, anger, and disapproval of slogans such as this, for example:
Condensing the many complaints and comments made on this particular government slogan to a few main points, common objections included those about the vagueness of its fully instructional character, with no direction as to how staying home and contributing to the common good was possible when access to shops, transport, work, and other crucial places were needed to meet basic survival needs. Whilst some noted that images such as this were written in a way which might be described as ‘easy read’ (but often without images), many commented that these worked best when they served to remind everyone of what they already knew, e.g., the ‘hands, face, space’ motto (accompanied by images). There was some appreciation of the way in which medical experts presented in the government briefings, but many participants explained that they stopped listening to daily briefings due the confusing messages delivered by key politicians, remarking on the anxiety which these sessions created for them. Similarly, many people limited themselves to key experts on the pandemic; Dr John Campbell (on YouTube) was seen as the most valuable source of information by several autistic people, for example, marked by scientific and medical credibility, honesty, and trust. Seeking consistency in messaging, or practicing avoidance, soon became key strategies for many who had decided to place severe limits on any communications about the pandemic.
Many of the people with learning disabilities had made clear decisions to trust only the members of their household, or the organisations which supported them. Commonly, these were mothers, and occasionally partners or friends. Although it seems that some of these communications were usually instructional rather than explanatory, there was a widespread acknowledgement that the ever-changing circumstances of the pandemic meant that changes in instructions were inevitable and wise. It seemed to be easier, and more reassuring, to pass the stressful activity of pandemic knowledge to significant others. Indeed, there was a high degree of understanding where people had been supported with this. The need to trust key people was crucial. In turn, the support and resources given to those in supporting roles can be seen as a necessity in such crises. Conversations with participants, staff members, and organisations and family members showed that this placed a heavy responsibility on those in supporting roles, often in situations where information and solutions to everyday dilemmas were hard or impossible to find. It was also common that these responsibilities had increased, with some people losing key support from people and organisations who had assisted them pre-pandemic.
As the pandemic went on, it was clear that a range of organisations grasped the opportunity to harness their (albeit limited) resources to benefit themselves and others from easy-read information services. Those who were supported well by local organisations spoke with pride about their involvement in newly formed co-productive services such as this. Almost all the people who were involved in such organisations seemed secure in using them for advice and information on the pandemic. Again, the need for resources to fulfil these roles is crucial.
Ideally then, people with learning disabilities and autistic people who live with family and are embedded in local organisations have been in better positions to get through the pandemic, but the fragility of such arrangements highlights many outstanding issues. Some of those who lived alone, have experienced increasingly pressured or troubled relationships with family, and those with no organisations to support them were often placed in untenable situations. Although some found creative ways of dealing with pandemic-related communication difficulties, including two people who began to create (popular) resources to support other people, others shared experiences featuring extreme hardship. This included common experiences of fear and anxiety, going without everyday basics, extreme loneliness, suicidal ideation, withdrawal of support for essential health and social care, and pressures on, and even breakdowns in, close relationships. The reduction in social interactions also led to personal communication problems for some. While some autistic people felt relieved at the new opportunity to escape social situations, many experienced much anxiety in the new restrictions placed on them, including the lack of opportunities to interact with others and the outside world. The withdrawal of social experiences caused some people with learning disabilities to develop reduced abilities to express themselves, with more than one person’s desire or ability to speak reduced to minimal utterances.
The lack of interactions was compounded for many people with learning disabilities, as the majority either do not like using computers, the internet and smartphones, or could not use them. Despite the surge in new online meeting applications and efforts made to create inclusive and accessible online spaces, many autistic people and people with learning disabilities continued to face considerable barriers to inclusion.
So far, our discussions with over thirty people with learning disabilities and autistic people have demonstrated that it is a necessity to engage with these (and other) unmet communication needs, though a wider survey on the extent of these experiences and their effects may provide additional insights. Although many presume that we are ‘back to normal’, this is not the case for many disabled people. Final discussions with participants revealed considerable fear of going out too often, or to potentially crowded spaces, such as public transport (used by the majority). Most people were ambivalent about the lifting of restrictions, and were angry about feeling unsafe around others, as they had begun to feel secure in the knowledge that people were expected to keep their distance and wear a mask. Some people said they would not go back to places such as cinemas and theatres, which they deemed exceptionally high risk. Many had adopted, or were renegotiating, new ways of arranging their lives, with more limited and structured ways of navigating the world, e.g., making a limited number of visits outside their homes in a week. Although some were grateful that they no longer had the onslaught of pandemic communications, most people believed that there was a strong case for providing up-to-date information on COVID-19 to allay fears of infection and unpredictable (and potentially risky) forms of social interaction.
Overall, it was unanimous that communications with autistic people and people with learning disabilities should be taken seriously by politicians, policy-makers and the media, if we are to improve social communications, support, and wellbeing in the future. All agreed that that this would necessitate an approach which places the views and /or and needs of people with learning disabilities and autistic people at the centre.
 D. Devine, ‘The bullying of people with autism and learning disabilities’, Learning Disabilities Today, March 2017, https://www.learningdisabilitytoday.co.uk/the-bullying-of-people-with-autism-and-learning-disabilities.
 G. Doherty, ‘Prejudice, friendship and the abuse of disabled people: an exploration into the concept of exploitative familiarity (“mate crime”)’, Disability and Society 35, no. 9 (2020): 1457–1482.
 K.-M. Lodge, ‘Covid-19 shows that the lives of people with a learning disability are still not treated as equal’, theBMJopinion 1 September 2020, available at: https://blogs.bmj.com/bmj/2020/09/01/covid-19-shows-that-the-lives-of-people-with-a-learning-disability-are-still-not-treated-as-equal
 K. Bates, D. Goodley, and K. Runswick-Cole, ‘Precarious lives and resistant possibilities: the labour of people with learning disabilities in times of austerity’, Disability & Society 32, no. 2 (2017): 160–175.
 Lodge, ‘Covid-19 shows that the lives of people with a learning disability are still not treated as equal’.
 S. Rowe and N. Alexander, ‘Pandemic Health Science Communications: Lessons Learned (or Not Learned)’, Nutrition Today 57, no. 2 (2022): 70–73.
 A. Rosken, A. Wilde, and L. Angelova, ‘Report on Promising Practices in technology use during the pandemic’, Report for European Association of Service providers for Persons with Disabilities (2021)
 D. Reeve, ‘Biopolitics and bare life: Does the impaired body provide contemporary examples of homo sacer?’ in: K. Kristiansen, S. Vehmas and T. Shakespeare (eds.), Arguing about Disability: Philosophical Perspectives (London 2009: Routledge): 203–217.
 Rosken et al., ‘Report on Promising Practices’.
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 Rowe and Alexander, ‘Pandemic Health Science Communications’.
 S. Flynn, C. Hatton, D.W.F. Abbott, and P. Heslop, ‘Health and social care access for adults with learning disabilities across the UK during the COVID-19 pandemic in 2020’, Tizard Learning Disability Review 26, no. 3 (2021): 174–179; Rosken et al., ‘Report on Promising Practices’.
 M. Sourbati, ‘Disabling communications? A capabilities perspective on media access, social inclusion and communication policy’, Media, Culture, and Society 34, 5 (2012): 571–587.
 E.C. Green and K. Witte, ‘Can fear arousal in public health campaigns contribute to the decline of HIV prevalence?’, Journal of Health Communication 11, no. 3 (2006): 245–259.
 I am grateful to Robyn Steward, who has worked with me as a Research Assistant.
Alison Wilde is a Senior Lecturer at Leeds Trinity University. Her research is in a range of areas of social justice, usually on topics of disability, gender, education, media and audiences. She is currently editor on a book series on Media, Culture and Disability for Peter Lang publishers. She co-founded the MeCCSA Disability Studies Network, and the BSA’s Disability Studies Group.