Digital inclusion and people with learning disabilities

Abstract

We are delighted to bring you this special edition of the British Journal of Learning Disabilities focussed on digital inclusion. This editorial is split into six sections. Following this introduction, it provides an overview of the special issue. Third, it summarises some of the key themes and findings arising from the work presented in this issue. Fourth, the reflections of Cameron Richards, our editor who has a learning disability, are presented. Fifth, we introduce the In Response article written by people with learning disabilities about one of the articles in this special edition. We close with some reflections on contemporary topics of interest, the current state of research in the field and provide some suggestions for future research endeavours to enhance the digital inclusion of people with learning disabilities.

Digital citizenship is the current state for many within society. Much of our lives is spent engaging with internet-enabled technology, and many are constantly connected and occupied by their digital devices and the activities and pastimes they pursue upon them. Many everyday tasks have moved or developed counterparts online, and there is an ever-increasing pressure to ‘keep up’. Hence, the societal demands and expectations for people to be digitally switched on constantly increase.

Recent figures from ‘we are social’ (2022) report that those using the internet do so for an average of 6 hours and 37 minutes per day, and our technology use continues to increase. Societally, people's online lives are viewed, by some, as equivalent to, or of even greater significance than, their offline lives. Despite this, digital exclusion and disadvantage remain unevenly distributed across society and markedly higher for people from particular groups, including people with learning disabilities. Moreover, in light of the current coronavirus disease 2019 (COVID-19) pandemic, there has been a rise in reliance on online methods of communication and interaction to maintain social networks and social capital (Caton et al., 2022; Chadwick et al., 2022).

How digital inclusion has been researched has developed over time. Initial work focussed on access to information and communication technologies (ICTs), including the internet (Chadwick et al., 2013). Although these questions of access and inequity remain important, recent conceptualisations have begun to adopt more nuanced and complex considerations of digital participation (Ågren et al., 2020). This includes looking at the ways in which people with learning disabilities engage in digital spaces and places, how they interact with ICT and how ICT is involved and embedded, or not, in their everyday lives.

Hence, digital inclusion describes a range of topics concerned with equality of access to ICT and its associated benefits and is a core component of social inclusion in the world today (DiMaggio & Garip, 2012; Robinson et al., 2015). The way that our online lives are now embedded in our daily living has led to processes of digital inclusion becoming enmeshed with those of social inclusion. A reciprocal relationship exists now where social inequalities will influence digital inclusion and the reverse, where digital inclusion or exclusion can influence or exacerbate social inequalities (DiMaggio & Garip, 2012; Robinson et al., 2015).

Some have argued for digital inclusion as a human right for people with learning disabilities (Chadwick et al., 2019; Seale & Chadwick, 2017). In particular, under articles 19 (Right to be included in the community) and 21 (Freedom of expression and opinion) of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD, 2006).

The articles in this special issue embody the breadth of coverage of digital inclusion as a topic. They consider a wide array of technologies, perspectives and topics. Key issues addressed include how digital inclusion and using different types of technology have affected the lives of people with learning disabilities and those who support them in the current and changing world setting. It also includes reflections on experiences, interventions, and evaluations using technology with people with learning disabilities.

A number of the papers in the special issue understandably focus on the use of technology during the COVID-19 pandemic. During the pandemic, social distancing requirements were implemented in many countries to prevent the spread of the virus. Because of this, activities that previously happened face-to-face rapidly switched to being virtual using information and communication-based technologies, especially video-conferencing.

One of the key aspects of this special issue is that in selecting the papers we, as the editors, wanted to ensure that the voices of people with learning disabilities were heard and prioritised in the final publication. Often researchers studying people with disabilities opt not to include the voices of those with learning disabilities because of the additional time, consideration, and adaptations required to authentically and meaningfully include them as research participants and coresearchers. We are happy that over half of the papers in this special issue focus on the accounts of people with learning disabilities from across the lifespan. Young adults (Agren et al., 2023; Fitzpatrick et al., 2023; Safari et al., 2023; Lystbæk-Weber et al., 2022), adults (Chadwick et al., 2023; Danker et al., 2023) and older adults (McCausland et al., 2023) share their experiences of using ICT, providing rich and valuable insights into their lives. Importantly, the experiences of people with profound and multiple learning disabilities (Caton et al., 2023) are also included, via their carers, in this special issue. This group has seldom previously been considered in relation to digital inclusion in the research literature. Other important stakeholder views and experiences about digital inclusion and the use of ICT by people with learning disabilities are also included. This brings in the perspectives of paid and family carers (Caton et al., 2023; Engwall, 2023; Fitzpatrick et al., 2023; Seale, 2022), day centre support staff (Engwall, 2023), special educational needs and mainstream teachers (Chiner et al., 2023), and researchers (Castro et al., 2023; Mikulak et al., 2023).

Variety and flexibility in research methods are evident in this special issue. Interviews, surveys, observations, diaries and workshops were all used for gathering research data, and some studies have integrated alternative, more inclusive communication routes, such as photovoice (Danker et al., 2023) and Talking Mats (Lystbæk-Weber et al., 2022). These latter approaches helped to engage people with learning disabilities in mapping, recalling and explaining their digital participation activities. There is also variability in study design and approach, with qualitative, quantitative and mixed studies utilising phenomenological, longitudinal, cross-sectional, reflexive and evaluative designs. Happily, a number of the papers adopt inclusive and participatory research approaches and practices (e.g., Castro et al., 2023; Chadwick et al., 2023; Danker et al., 2023; Lystbæk-Weber et al., 2022).

The special issue principally provides a global minority perspective on the digital inclusion of people with learning disabilities with papers included from authors based in the United Kingdom, Australia, Ireland, Sweden, Denmark, Norway, Portugal and Spain. In this context, it is also important to point out that the terminology globally shifts between learning disability, intellectual disability and intellectual and developmental disability, which is also evident in the contributions to this special issue.

The issue covers an eclectic array of work pertaining to digital inclusion though some key cross-cutting themes are evident and are drawn out below. Exemplar papers addressing these themes within the issue are listed.

Hello, my name is Cameron Richards. I have a learning disability as well as ADHD. I am writing this so you can understand how I felt about the process of being an editor for this special edition of the British Journal of Learning Disabilities. One of the better things I found is that the work allowed me to view other people's insights on mine and similar people's lifestyles online.

When I started reviewing the papers submitted to the special issue, I quickly found out that people were using ‘intellectual disability’ to describe people like me. This annoyed and frustrated me because when I read those words it makes me feel inferior to other people because it says we are not intelligent and won′t be able to meet higher standards. But we can. It just takes us longer than other people to learn things.

I did find that people were aiming for journal standards which made it hard to follow. This made it frustrating for me and harder to understand what people were trying to say in their research. I took time to reword the jargon that they were using. This was hard for me at times. The thing that I struggled with is something that I believe a lot of people with learning disabilities have, and that's making sure our brains are able to process the words before they come out of our mouths. Even if the terms researchers use are factually correct, they are hard to understand. Darren and I talked about why researchers used intellectual disability as a different word for learning disability. I think researchers may need to be knocked down a peg or two, and me being an editor of this journal might help to do that.

Working with Darren was good because he supported me, but I felt what I brought was valued because I helped him to spot things in the accessible summaries that were hard to understand for me. I got a lot of new knowledge and work experience out of being an editor and I like that I was paid for my contribution.

I found that the journal papers that were included in the special issue did miss out on the negative sides of using the internet and the negative things that people with learning disabilities can do online. It was frustrating for me that one of the most interesting papers at the abstract stage wasn′t submitted for the full journal. This was the story of a person with learning disabilities who did risky and negative things online and would have filled that gap.

I think that instructions for using technology need to be made easier for people with learning disabilities to understand. We also need more opportunities and support for people with learning disabilities to learn about online risks.

I liked how people with learning disabilities had a voice at the table in these research studies, and how they focussed on the positives and empowerment of people through using the internet. This is a good thing. It is important that researchers include the voice of people with learning disabilities and include them more when designing technology. People like me can speak up for people with learning disabilities who might not feel confident removing the mask they wear in public.

We are also delighted to present the In response contribution (Kwiatkowska et al., 2023) responding to the paper entitled Use of technology by older adults with an intellectual disability in Ireland to support health, well-being and social inclusion during the COVID-19 pandemic (McCausland et al., 2023). The inclusive research team from RIX Research and Media at the University of East London, UK, chose to respond to the article from McCausland et al., 2023 because the team had experiences from a similar project during the pandemic in England called Digital Lifeline (The Good Things Foundation, 2021). In their response, the inclusive research team address six questions that arose in connection with their reading of the article. The text describes the interesting conversation that the research team later had with the author of the article.

Throughout our careers and lives, we have seen great work being conducted in the field of learning disabilities and major developments in knowledge and practice. But, alongside this, we have noticed that the issues raised as important to improve the lives of people with learning disabilities often remain the same: lack of societal inclusion, funding and meaningful occupation alongside inadequacies in health and social care. Research priorities that affect people's lives appear to come and go in waves (like fads), with new governmental and media priorities. The disdain with which people with learning disabilities are treated societally, though much improved, does sadly appear to persist in numerous spheres of life (Hatton, 2019). Our online lives are now a fundamental part of our ‘real’ lives, and cyberpsychologists often reject the notion of online versus real life and instead discuss our online and offline lives and selves (Kaye et al., 2022). The online world is here to stay, and so research and practice to enhance our online lives and use of ICT should not be a fad but something that is taken seriously by those designing technology and software, governments and policymakers worldwide.

The work presented in this special issue provides a significant contribution to our existing knowledge regarding the digital inclusion of people with learning disabilities. It highlights some of the fundamental benefits and challenges people with learning disabilities face day-to-day in relation to technology use and digital participation and inclusion. It also highlights lessons learned from the rapid adoption and adaptation to technology use during the COVID-19 pandemic.

How can we make being online better for people with learning disabilities? The papers in this volume provide some useful insights into important factors. These include adequate levels of resourcing, good quality support, training and education for people so they can develop their skills, along with providing opportunities and respecting people with learning disabilities' right to be included and to make their own decisions. These processes and practices can enhance digital inclusion and make getting online and using ICT more enjoyable and facilitative of people's self-determination and well-being.

Linked with the proliferation of advertising online (we are social, 2022), there are fresh digital inclusion challenges moving forward that may disproportionately adversely affect people with learning disabilities and their carers. There is an overwhelming and ever-increasing plethora of apps and online websites offering goods and services. There are also strides being made in enhancing the website and technological accessibility (e.g., W3C, n.d.). Nonetheless, digitised services, websites and apps appear seldom routinely developed with accessibility in mind at inception (van Holstein et al., 2021). As financial gain is a primary driver, strategies and techniques to encourage personal data skimming, subscription and purchasing may further proliferate and are unlikely without intervention to accommodate the additional support needs and vulnerabilities of people with learning disabilities. Hence, greater accountability, protections and supports need to be implemented by governmental bodies. It is important such concerns do not exacerbate digital exclusion and negative online experiences for people with learning disabilities. While there is the issue of the increasing fear around technology use, it continues to be the primary route to successful engagement with many aspects of a self-determined life. As such, gatekeeping, restriction and societal exclusion of people with learning disabilities from online life serve as a form of disdain and discrimination that needs to be tackled and addressed in research and policy moving forward. To do this, work to develop ICT, interventions to enhance digital inclusion and policy that involve all key stakeholders is needed. The experiences and voices of people with learning disabilities need to be placed front and centre.