The Digital Exclusion of People with Intellectual Disabilities During the COVID-19 Pandemic

Survey data

The survey was conducted by the SSRI from the 16th of September to the 8th of December 2021 and was funded by the Ministry of Social Affairs and Labour. A random sample of 809 was chosen from individuals who use services according to the Act on Services for Disabled People with Long-term Support (Ministry of Social Affairs and Labour 2018), and they could choose to receive the questionnaire online or via mail or participate by phone. The survey had a 51% response rate (n = 412). Over half of the participants responded by phone (n = 201; 51%), followed by online (n = 177; 43%) and mail respondents (n = 25; 7%). The sample comprised 46% women (n = 189) and 54% men (n = 223) aged 18 or older. People with intellectual disabilities comprised 38% (n = 144) of the survey respondents; we focus on their experiences in this article.

The questionnaire was based on a health questionnaire from a previous research project focusing on the health of disabled people (Snæfríðar- og Gunnarsdóttir 2017). This version of the questionnaire included questions about COVID-19, and to ensure the inclusion of questions about important pandemic-related issues, it was customized accordingly and amended in collaboration with members of the disability movement in Iceland.

From the survey dataset, four variables were utilized to gather information on: 1) the type of impairments; 2) subjective economic strain; 3) the frequency of communication with friends and family via phone or social media during the pandemic; and 4) living arrangements. The subjective measure of economic strain is a question commonly used in cross-national collaboration surveys. Statistical tests were performed in Jamovi 2.2.5.

Participants could answer the questionnaire online, via mail, or participate by phone. All three methods depend on data-related abilities and specific forms of digital engagement. The survey was made available in an easy-to-read format to facilitate the participation of a broader group. In cases where respondents needed support to participate, assistants and family members were asked to assist them. In 61% of cases, service users answered independently, 17% received support to answer, and in 23% of cases, personal assistants or family members answered on behalf of service users.

The survey has limitations, most notably that the sampling frame only includes people who receive services from the municipalities, excluding those who do not use any services. The reason for this exclusion is the absence of official records for disabled people who do not receive services. The lack of statistical information about disabled people affects policymaking and resource allocation. By prioritizing non-disabled experiences and offering no disability statistics, public institutions responsible for collecting social data contribute to systemic, data-driven discrimination against disabled people in Iceland (Charitsis & Lehtiniemi 2022; D’Ignazio & Klein 2020a).

Focus group data

Focus groups were used to gather qualitative data as they yield much information in a relatively short time and have the potential to generate diverse and sometimes conflicting information (Creswell & Creswell 2018). The purpose was to create a setting where participants could interact with one another and with the moderator and spark discussions about their experiences during the pandemic. Three focus group interviews were conducted. The first two took place in November 2021, when social restrictions were lifted temporarily. This was followed by a period of stricter restrictions, and therefore, the third and last focus group was carried out in January 2023.

The participants were selected by purposeful sampling (Creswell & Creswell 2018). The selection criteria were as follows: (1) individuals with intellectual disabilities; (2) aged 18 or older; (3) interested in sharing their experiences; and (4) had taken college courses under an inclusive vocational diploma program for students with intellectual disabilities. In addition, some kind of computer training or further education was considered advantageous as it provided possible participants with valuable insights into the specific challenges and barriers they had encountered accessing and using digital technologies. A total of 16 people participated (8 women and 8 men), aged 22–40. Half of the participants had completed their compulsory education in inclusive settings, while others had attended segregated special schools for disabled children. All focus group participants had been in self-contained special education classes in mainstream upper secondary schools. Additionally, they had completed a vocational diploma from the University of Iceland.

The focus group interviews were held at the University of Iceland and were recorded and transcribed by the first author. We encouraged the participants to freely discuss their opinions and experiences during the focus groups, using the survey results as references.

Conscious of the inaccessibility of traditional interview research methods and the need for researchers to respect and recognize alternative modes of communication (Goode 1994), we adapted the length of the interviews to the wishes and needs of the participants, who found it difficult to participate in long sessions. Therefore, one group lasted 20 minutes and two groups a little over 40 minutes. We furthermore engaged in individual meetings with the participants to ensure that our findings accurately reflected their perspectives. This approach, akin to member-checking (Creswell 2012), helped validate the trustworthiness of our findings.

We used Braun and Clarke’s (2022) six stages of reflexive thematic analysis. In the first phase, all three authors familiarized themselves with the datasets and jointly discussed similarities between the two datasets. The second phase consisted of initial coding, primarily done by the first author. Subsequently, in the third phase, initial themes were generated by the first two authors. The fourth phase involved further development and review of the themes that had developed in prior stages. At this point of the analysis, barriers to participants’ access to digital technology had become a prominent theme, bringing us to the digital divide concept. In the fifth phase, these themes were refined further collaboratively by the first two authors, guided by the analytical framework provided by CDS (Meekosha & Shuttleworth 2009) and data feminism (D’Ignazio & Klein 2020a). Finally, the findings were written, and the two datasets were interwoven. Direct quotes were translated from Icelandic to English by the first two authors.

Ethical considerations

Importantly, research is not exempted from the broader ableist social context. Indeed, oppressive societal relations can be accentuated and amplified in knowledge creation (disability studies being no exception). It is worth noting that all authors are non-disabled and, therefore, do not share the lived experiences of the oppressive power structures explained by the research participants. Taking a cue from Morris (1992), we turn our spotlight on the ableist structural domain and how power dynamics and prejudices, baked into the social fabric, harm disabled people. With our work, we aim to contribute to both scientific and practical knowledge about structural inequalities encountered by disabled people, which in turn will hopefully benefit their material circumstances.

Throughout the study, we adhered to ethical research practices. The research proposal was reviewed by the Research Ethics Committee for Public Higher Education Institutions (SHV2021-009). Before the focus group sessions, participants were informed of the study’s nature and purpose and of their right to withdraw or terminate their participation at any time. Importantly, this information was presented in an accessible format, and care was taken to ensure each participant’s opportunities to raise questions and discuss their participation. To protect the participants’ anonymity, identifiable background information was omitted, both in the analysis phase and in the published findings. The survey received ethical approval from the National Bioethics Committee (VSN-21-049).

Perceived economic strain

Lack of access to digital technology is most often linked to socioeconomic status (Scheerder, van Deursen & van Dijk 2017). In addition to ranking among one of the highest in household Internet access (NORDICOM 2021), Iceland provides a welfare system, potentially decreasing the effects of economic precarity on the disability digital divide among the Icelandic population. When asked about perceived economic strain, around a quarter of the survey participants (n = 93) reported that it was very or rather difficult to make ends meet. Using the same dataset, an SSRI report (Tryggvadóttir, Snæfríðar- og Gunnarsdóttir & Sævarsson 2021) compared these results to those of a general sample of Icelandic citizens and found that disabled people were more likely to report financial hardship and experienced more difficulties in accessing medication and groceries during the pandemic than non-disabled people. This corresponds to international findings that establish disabled people as being more likely to experience economic hardship and poverty than non-disabled people (Friedman 2022). A more exclusive look at participants with intellectual disabilities revealed that approximately 13.8% reported difficulties in making ends meet. However, when examining phone or digital technology use to contact family members, friends, or other people during the pandemic, the chi-square test showed no difference between disabled people who reported financial difficulties and those who did not indicate such problems.

Although socioeconomic status did not seem to be a significant barrier to digital access for people with intellectual disabilities, we identified several intersecting sociocultural barriers that contributed to the participants’ digital exclusion during the pandemic in the focus group data. Four main themes regarding barriers to the participants’ use of information and communication technology were constructed related to a) non-disabled people’s paternalism (staff and family); b) lack of digital training and access to education; c) quality of disability services and support; d) and lack of inclusive technological design and data presentation.

Barriers to digital access – paternalism

According to the survey results, a substantial portion of people with intellectual disabilities rarely or never used a phone or digital technology during the pandemic to contact others, raising concerns about the social structures that may hinder digital access and use. While most (73%) of the focus group participants used technology daily, they were aware of negative or paternalistic attitudes toward their Internet use and highlighted them as significant barriers for people with intellectual disabilities. Four focus group participants stood out in terms of Internet access. They had limited social media presence and restricted Internet use, as their parents or support staff were ‘in charge’ of their social media use. Two of these were in their late twenties and lived at home with their parents and explained that they were not ‘allowed’ to own computers or use the Internet. The other two participants were in residential care and had access to computers and digital devices but rarely logged on, even during the pandemic. These participants had been told by non-disabled staff and family members that the Internet was ‘not for them’, that it was too complicated and risky to navigate. One explained, ‘My mom takes care of this completely. She manages Facebook’. Although these four participants were in the minority, their experiences correspond to previous research reporting caregivers’ negative perspectives about the Internet usage of people with intellectual disabilities (Heitplatz, Bühler & Hastall 2021; Löfgren-Mårtenson 2008). Prohibiting people with intellectual disabilities from using the Internet is commonly done under the guise of preventive and safeguarding measures as a way to shield them from online scams, cyberbullying, harassment, and grooming by predators (Chadwick, Quinn & Fullwood 2017).

The focus group participants discussed these paternalistic attitudes or fears and unanimously agreed that digital citizenship training would be a more feasible way to protect people from possible harm. Such dialogue would make them more capable of navigating the negative aspects of the Internet and aid them in actively participating in making the Internet a safer space for everyone. A man in his early twenties explained, ‘Everyone needs to know about digital citizenship and the risks of the Internet like addiction and bullying…You have to be responsible and report any type of bullying you see on the Internet’. Another young man added, ‘Maybe the [support] staff needs to be educated about the Internet and that we have the right [to use it]’.

For participants, their lack of access to the Internet and technological use was not due to lack of availability of devices or socio-economic status, as suggested by first-level digital divide research. Rather, their access was hindered by ableist power dynamics, namely the assumption that non-disabled people were better equipped to determine what was in the participants’ best interest. These results echo previous findings and the fact that people with intellectual disabilities are often perceived as vulnerable and needing care and oversight (Björnsdóttir, Stefánsdóttir & Stefánsdóttir 2015). Furthermore, such attitudes tend to prioritize the needs and preferences of parents and support staff over those of people with intellectual disabilities (Carlson 2001).

Barriers to digital access – digital training and education

The focus group participants agreed that lack of access to digital training and education was a significant barrier for people with intellectual disabilities. Those who had attended a segregated special school reported minimal computer education prior to college. Their education had mainly focused on life skills, with little emphasis on digital literacy. This corresponds to previous research, which shows that students in segregated special education settings often face low expectations and are excluded from educational activities such as Internet training. At the upper secondary level, emphasis is placed on life skills and vocational training over digital literacy (Björnsdóttir 2014; Sigurðardóttir 2013).

A similar disregard for people with intellectual disabilities’ need for digital technology was apparent in the daily press briefings broadcast on TV and radio during the pandemic. During periods of social restrictions, the Directorate of Health and the Chief Epidemiologist held press briefings where they frequently addressed the circumstances of older people and encouraged caregivers to teach seniors digital technology so they could maintain their social connections. A woman in her late twenties from a focus group criticized that similar needs of disabled people were overlooked, explaining, ‘It is not very good when they [disabled people] do not know how to use Zoom. People will simply isolate themselves if they do not know how to use the computer or anything [social media]’.

Focus group participants claimed that in their limited digital education, there had been no introduction of assistive technology that could help them to navigate the Internet or facilitate their technology use, and none of the focus group participants had access to any such assistive digital devices during the pandemic. This is in line with research that shows that people with intellectual disabilities are less likely to use assistive technology than other disabled people (Boot et al. 2018). The availability of such technology seems dependent on various factors and often comes down to individual educators’ or staff’s interests, knowledge, and attitudes towards people with intellectual disabilities, as well as policies stating who is eligible to apply for it. Technoableism, the prevalent notion that technology can ‘fix’ the problem of disability, is embedded in the development of assistive technologies. Furthermore, despite being the intended beneficiaries, disabled people are often excluded from the development process of such technology (Shew 2023). However, when it comes to people with intellectual disabilities and their access to assistive technology, technoableism seems intertwined with cognitive ableism—the ubiquitous belief that people with intellectual disabilities think and process information at a level that is inferior to that of people who do not have intellectual disabilities (Carlson 2001)—resulting in digital exclusion.

Despite these barriers, participants had found various methods to assist their Internet and social media access. They primarily learned from peers, classmates, and friends to use applications such as text-to-speech applications, word prediction software, speech-to-text add-ons, and grammar checks. Notably, Icelandic language support in information communication technology has improved, benefiting people with intellectual disabilities during the pandemic by making the Internet more accessible.

Barriers to digital access – quality of services and support

Digital use is often defined in ways that prioritize non-disabled engagement, overlooking the diverse intersections disabled people have with technology (Jaeger 2012; Shew 2023). Many participants in the focus group demonstrated digital use that differed from typical definitions of digital access and use, reflecting broader, more relational digital engagements. An example of diverse technological engagement is the case of the four participants who had restricted computer access. Despite not using computers, they owned smartphones and used several different applications, such as a digital bus pass, a clock, and a text/audio message application. They furthermore watched content through streaming services and used the devices as phones. Their way of using technology aided them in everyday life and helped them become more independent. Research that focused solely on acts such as retrieving information from the Internet or posting on social media would easily have overlooked the diverse digital technology uses of participants. Relational use of technology, with the assistance of support staff, family, and friends, was common among participants. A man in his thirties who is physically unable to use digital technology but has learned how to navigate the Internet and use digital devices through his personal assistants, explained his digital use thus, ‘I use technology through my assistants. It is never a problem except when the technology does not work. That happens a lot. All my assistants know how to use digital technology, and if they don’t, I teach them. It works well for me’.

The success of relational use hinged on the quality of support that the participants received. Several participants discussed being in college during the pandemic and the shifting requirements that arose due to remote learning. The available support to enable them to adapt to these changes differed substantially among the participants. A woman in her early twenties said:

It was obvious that some students needed more help, but nobody at home—their parents or siblings—knew how to do this [use communication platforms]. And for the people living in group homes, it was obvious that they did not get any help. They often missed classes. Nobody at home told them when to log on, or nobody helped them log on.

It may seem counterintuitive that people living in group homes with 24-hour support receive less assistance with technological issues than those who have less support in daily life. However, research before the pandemic has demonstrated that the quality of the services provided in residential care has not been in line with policy goals (Jónsdóttir and Egilson 2013). To compare the use of phone or digital technology between people with intellectual disabilities living independently and those in residential care in the survey data, we performed a chi-square test. The majority (73.4%) of survey participants living independently reported using a phone or digital technology frequently or very frequently to contact their family members, friends, or other people during the pandemic. Those who resided in assisted living settings were less likely to use a phone or digital technology (x² = 24.2, p < 0.001) compared to other disabled people. More specifically, 27.1% of those in residential care never or almost never used a phone or digital technology to contact other people, as opposed to 9.7% of those who lived independently. These findings indicate that social interactions, such as through digital devices, are not prioritized within service entities struggling to provide essential support.

The option of using technology during the pandemic was important to most of the participants. An example of online opportunities was described by a man in his early thirties who was in residential care. He was independent in technology use and had remained active during the first wave of the pandemic through various online engagements: ‘Zoom saved us. My theatre and music groups met on Zoom. There were even Zumba classes on Zoom, which was very nice’. Other focus group participants, especially those who required more support, claimed, however, that they had missed many online opportunities during social restrictions as they did not know where to look for them. A young man who was housebound during most of the pandemic because he needed to shield explained the importance of digital technology to him:

I could use technology during COVID. I was lucky in a way. I had quit my job, so I was not doing anything anyway during COVID. I could talk to people on Messenger, but I was not going out meeting people. I used Facetime or the phone and stuff. My personal assistants assisted me [in accessing technology], but they had to wear protective gear when I was in quarantine. They were like aliens [laughs]. This was boring, but you just must go through this; [there is] nothing you can do about it…I was in contact with my mum and nan and my family and watched Netflix…Technology helped me a lot during the pandemic. I used the technology to access TV; otherwise, I would not have anything to watch except the ceiling in my room.

His use of technology and the Internet had clear offline benefits, as emphasized in third-level digital divide conceptualizations, keeping in touch with his family during the pandemic and for entertainment purposes.

Barriers to digital access – digital design and data presentation

Focus group participants had all encountered significant challenges with digital technology, particularly navigating websites and using communication platforms during the pandemic. One focus group participant described the difficulty of learning to join an online activity, initially feeling overwhelmed because he did not have much faith in his own digital abilities: ‘I thought to myself that I could not learn this’, and then a relief when he figured it out. Participants had struggled to retrieve pandemic-related information from the official COVID-19 website. Although the United Nations (n.d.) urged governments to provide reliable information about global and national COVID-19 developments digitally, the Icelandic COVID-19 website lacked accessible information or easy-to-read alternatives and proved inaccessible to participants. To demonstrate this to us, four focus group participants scrolled through the website, explaining the accessibility barriers they encountered. The official information website clearly did not meet accessibility standards, which is of great concern. The website’s design and content privilege non-disabled experiences and information processes, emblematic of data ableism (Charitsis & Lehtiniemi 2022; D’Ignazio and Klein 2020a), and, as a result, participants could not use the information on it to their benefit. Some focus group participants had accessed information provided on the National Association for People with Intellectual Disabilities website but were disappointed that it mainly provided information about personal hygiene and social distancing rules, with no details about the pandemic’s development. Other participants relied on family members and support staff for pandemic-related information.

During the pandemic, a digital acceleration took place in different spheres of public administration, which affected the focus group participants in various ways. For example, municipalities stopped accepting hard-copy applications for support and services and instead made forms available online. Applicants needed an Internet connection, devices, digital skills (or assistance), and electronic identification to access the forms. The electronic ID is saved to the SIM card of a mobile phone, and the user selects a PIN that they type in each time they use their electronic ID. According to the Digital Iceland webpage, electronic IDs are supposed to ‘make our lives easier and are simple to use’ (Digital Iceland n.d.). However, regulations pertaining to the identifications excluded many people with intellectual disabilities from obtaining them, as the process requires individuals to choose a PIN and enter it into the phone without assistance. Consequently, many people could not communicate with healthcare service providers, get results from COVID screenings, obtain information about vaccine appointments, obtain prescription drugs, or give others power of attorney. This hastened development of digital government caused a great deal of stress and hassle for the participants. A couple of focus group participants were not approved for electronic IDs, and none were able to navigate and use the service platform without support. A man in his thirties who resided in assistive living settings described the difficulties some of his housemates encountered during the pandemic as they did not have electronic identifications:

It was a hassle for these people. They could not even get their medication or access online banking. One guy who used a ventilator had to go in an ambulance to the electronic identification service provider to apply for his identification. There is this rule that you must physically show up at this office.

The adoption and uptake of digital public services breaches the Convention on the Rights of Persons with Disabilities, which clearly states that disabled people should be allowed support in exercising their legal capacity (United Nations 2007, Article 13). It furthermore perpetuates a system that disregards people with intellectual disabilities, reinforcing their societal marginalization.