It is not an overstatement that COVID-19 is ‘a new illness on a scale not seen in living memory’ (Rayner, Lokugamage and Molokhia, 2020). The Royal National Institute for the Blind (RNIB) has campaigned since the first 2020 lockdown began in the UK for accessible COVID-19 information, ‘so blind and partially sighted people have access to the same information at the same time as everyone else. Unfortunately, this hasn’t always been the case, with notable examples like the letter sent to those judged to be ‘extremely vulnerable’ to coronavirus not available in accessible formats’ (RNIB 2020).
Indeed, research by the RNIB published in May 2020 found that ‘social distancing is near-impossible for many blind and partially sighted people’, with 74% of respondents reporting they were either ‘very or quite concerned about getting access to food’ while 21% of people reported ‘they had had to ration food’ (RNIB 2020).
At the time of writing this, as the UK eases the 2021 lockdown, social distancing measures have remained in place, and are likely to have enhanced or added new challenges to visually impaired and blind people. (Similarly, any changes to the government guidance is likely to be challenging too). There is still a need for further research and coverage of the experience of the COVID-19 pandemic, lockdown and/or social distancing measures for blind or visually impaired people, both in research and different media, including comics.
Graphic medicine has been considered a valid medical information tool beyond comics scholarship circles to include medical journals (for example, Gray & Back 2020). Graphic medicine proponents argue that, comics can provide ‘new insights into the personal experience of illness’ (Green & Myers 2010), and previous work has looked into the role of graphic medicine linking graphic narratives to medical education, narrative medicine and/or the medical humanities (Farthing & Priego 2016; Priego & Farthing 2020). In the context of the COVID-19 pandemic, there are precedents of comics created as ‘communication aids […] to promote rapid sharing of communication skills with clinicians across diverse disciplines’ (Gray & Back 2020).
The development of the comic presented here was motivated by the creative brief from the United Nations, particularly addressing the ‘Key Message’ of ‘kindness contagion’, which was to have the ‘tone: common humanity, mental health, caring, solidarity, empowerment, destigmatisation, inclusive, joy’ (United Nations 2020) as well as the RNIB’s #InfoForAll campaign (RNIB 2020). The two-page comic we present below (Figures 1 and 2) sought to make a rapid original contribution within the domain of graphic medicine to the medical and public debates around COVID-19 containment measures and how patients experience them in the early stages of the first UK lockdown in the spring of 2020.
The comic was created following user-centred, interactive narrative design methods involving co-design techniques. The study, development and use of comics in the field of Interaction Design is well documented and takes a variety of forms. These include, but are not limited to, communicating personas and scenarios, as a component of participatory design, in lab-based studies, as a means to make ‘research results a more engaging and enticing experience quickly and efficiently’ (Haughney 2008) and as ‘a powerful and valuable medium for representing research through design’ (Dykes et al. 2016).
With an increasingly aging population, care, health and wellness have also been, needless to say, the focus of much research and development by the Interaction Design community (Chen et al. 2013). ‘In the context of disability’, Wilson et al. remind us, ‘codesign is consistent with the changes in attitudes that have occurred in the last 30 years, particularly the uptake of the social model of disability (Oliver 1996). This model views disability as arising not from the medical impairment, but from disabling barriers and attitudes within society.’ Because ‘codesign techniques encourage designers and end-users to work together in the creation of design solutions’, this technique can contribute to ‘blurring the boundaries between traditional stakeholder roles in user-centred design,’ and therefore can place people with disabilities should be the heart of the design process (Wilson et al. 2015).
The development of the comic followed an iterative process composed of the following sequential steps.
Due to the emergency situation in the first months of the COVID-19 pandemic, the comic was meant to be produced and released rapidly. However, further work needs to be done to continue testing the comic with different stakeholders.
In co-designing this rapid response comic with a visually impaired co-designer and co-author the team recognised it was working ‘with asymmetry’, rather than attempting symmetry (Bennett and Rosner 2019). As a comic, it is idiosyncratic and subjective; it is based on the individual experiences of a blind person, and it does not intend to represent everyone’s experiences nor to make any generalisations (see also Wilkins and Priego 2020). Principles of biographical and documentary comics, and autoethnography and autofiction, were followed (El Refaie 2010; Méndez 2013). Ethical guidelines were followed and written co-design and co-authorship consent was signed by the three co-authors of the comic.
As an evidently visual medium comics present significant accessibility challenges for those with reading and/or visual disabilities or neurodiversity. Accessibility is an essential requirement in design work. A descriptive alt-text of the comic was produced for social media sharing. Future work includes the inclusion of detailed alt-text for the creation of a PDF with machine-readable text so it can be read-aloud (Priego, de la Mora, & Huddy 2020).
We hope the comic makes a contribution to further discussion and foster awareness that blind and/or visually impaired people have experienced the pandemic in specific ways that are distinct. The intention has been to follow the United Nations’ brief of reaching a tone of common humanity, care solidarity, empowerment, destigmatisation and inclusivity, while giving voice to a blind person and co-designing the comic with them. As everyone is different and has different needs, it remains essential that we are aware that social distancing measures and their signalling will be experienced differently, and in many cases may not even be visible at all to others. We propose that user-centred methods and co-design techniques provide a useful framework to place people at the heart of their own graphic medicine stories, and an essential one to at least make our best to represent individual stories more accurately, particularly when those stories are told in a medium they themselves get to access in a different way.
The author would like to thank Francisco de la Mora and Hugh Huddy for their participation and kind permission for me to present the comic as an academic output in this form.
As credited above, the comic presented here was co-designed as part of research work led by the author, and is based on conversations with Hugh Huddy about his experiences. Francisco de la Mora was the artist and writer of the comic. The author would also like to thank Angelica Curzi for producing the alt-text for sharing the comic’s images online.
The author would also like to thank Dr Simon Grennan and Dr Peter Wilkins. Our previous work together in the Parables of Care: Creative Responses to Dementia Care project (2017–2020) was an essential step leading to the present work.
This work was conducted independently and has no official connection with the United Nations nor the RNIB. It was a citizen initiative in response to COVID-19 partly inspired by said campaigns. Consent forms have been submitted to the journal.
The author has no competing interests to declare.
Bennett, C. L., & Rosner, D. K. (2019). The Promise of Empathy: Design, Disability, and Knowing the “Other”. In Proceedings of the 2019 CHI Conference on Human Factors in Computing Systems (CHI ‘19). New York, NY, USA: Association for Computing Machinery, Paper 298, pp. 1–13. DOI: https://doi.org/10.1145/3290605.3300528
Chen, Y., Ngo, V., & Young Park, S. (2013). Caring for caregivers: designing for integrality. In Proceedings of the 2013 conference on Computer supported cooperative work (CSCW ‘13). New York, NY, USA: Association for Computing Machinery, pp. 91–102. DOI: https://doi.org/10.1145/2441776.2441789
Dykes, T., Blythe, M., Wallace, J., Thomas, J., & Regan, T. (2016). RtD Comics: A Medium for Representing Research Through Design. In Proceedings of the 2016 ACM Conference on Designing Interactive Systems (DIS ‘16). New York, NY, USA: Association for Computing Machinery, pp. 971–982. DOI: https://doi.org/10.1145/2901790.2901821
El Refaie, E. (2010). Visual modality versus authenticity: the example of autobiographical comics. Visual Studies, 25(2), 162–174. DOI: https://doi.org/10.1080/1472586X.2010.502674
Farthing, A., & Priego, E. (2016). ‘Graphic Medicine’ as a Mental Health Information Resource: Insights from Comics Producers. The Comics Grid: Journal of Comics Scholarship, 6, 3. DOI: https://doi.org/10.16995/cg.74
Gray, N. A., & Back, A. L. (2020). Covid-19 communication aids. BMJ, 369, m2255. DOI: https://doi.org/10.1136/bmj.m2255
Green, M. J., & Myers, K. R. (2010). Graphic medicine: use of comics in medical education and patient care. BMJ, 340, c863. DOI: https://doi.org/10.1136/bmj.c863
Haughney, E. (2008). Using comics to communicate qualitative user research findings. In CHI ‘08 Extended Abstracts on Human Factors in Computing Systems (CHI EA ‘08). New York, NY, USA: Association for Computing Machinery, pp. 2209–2212. DOI: https://doi.org/10.1145/1358628.1358653
Méndez, M. (2013). Autoethnography as a research method: Advantages, limitations and criticisms. Colombian Applied Linguistics Journal, 15(2), 279–287. Available from http://www.scielo.org.co/scielo.php?script=sci_arttext&pid=S0123-46412013000200010&lng=en&tlng=en. [Accessed 20 April 2021]. DOI: https://doi.org/10.14483/udistrital.jour.calj.2013.2.a09
Oliver, M. (1996). Understanding disability: From theory to practice. St Martin’s Press. DOI: https://doi.org/10.1007/978-1-349-24269-6
Priego, E., de la Mora, F., & Huddy, H. (2020). Community Matters: Please Be Kind. (A COVID-19 Response Comic). DOI: https://doi.org/10.25383/city.12357215.v1
Priego, E., & Farthing, A. (2020). Barriers Remain: Perceptions and Uses of Comics by Mental Health and Social Care Library Users. Open Library of Humanities, 6(2), 4. DOI: https://doi.org/10.16995/olh.98
Priego, E., & Wilkins, P. (2020). Comics as Covid-19 response: Visualizing the experience of videoconferencing with aging relatives. ACM Interactions, XXVII. DOI: https://dl.acm.org/doi/10.1145/3404207
Rayner, C., Lokugamage, A. U., & Molokhia, M. 2020. Covid-19: Prolonged and relapsing course of illness has implications for returning workers. BMJ Opinion. 23 June. Available at https://blogs.bmj.com/bmj/2020/06/23/covid-19-prolonged-and-relapsing-course-of-illness-has-implications-for-returning-workers/ [Accessed 20 April 2021]
RNIB. (2019). Key information and statistics on sight loss in the UK. Last updated 1 September 2019. Available at https://www.rnib.org.uk/professionals/knowledge-and-research-hub/key-information-and-statistics [Accessed 20 April 2021]
RNIB. (2020). Seven achievements of our #InfoForAll campaign. Thursday, 21 May 2020. Available at https://www.rnib.org.uk/campaigning/campaigning-news/seven-achievements-info-for-all-campaign [Accessed 20 April 2021]
United Nations. (2020). COVID-19 Creative Brief Key Messages. Slides. Talenthouse. Available at https://talenthouse-res.cloudinary.com/image/upload/v1/invites/x1ukvopj6jspstj93pvi [Accessed 20 April 2021]
Wilson, S., Roper, A., Marshall, J., Galliers, J. R., Devane, N., Booth, T., & Woolf, C. (2015). Codesign for People with Aphasia Through Tangible Design Languages. CoDesign, 11(1), 21–34. Accessed via City Research Online at http://openaccess.city.ac.uk/6101/. DOI: https://doi.org/10.1080/15710882.2014.997744