Intellectual disability

Perceptions of the risks and benefits of Internet access and use by people with intellectual disabilities D.D. Chadwick*, S. Quinn & C. Fullwood *Corresponding author Dr. Darren D. Chadwick Faculty of Education, Health & Wellbeing, University of Wolverhampton, MC Building, City Campus - South, Wolverhampton, UK. WV1 1AD Tel: +44-(0)1902-323534 Email: d.chad 2 Accessible Summary Both good and bad things can happen when people use the Internet and people with learning disabilities are not using the Internet as much as other people Worry about the bad things that can happen online might be one reason people with learning disabilities are not supported to access the Internet as much as other people We wanted to find out what people without learning disabilities believe about these good and bad things for people with learning disabilities. We wanted to find this out because the way people without disabilities think about the good and bad things online might affect how people with learning disabilities are treated. We found out that people without learning disabilities think that both the good and bad things are more likely to happen to people with learning disabilities when they use the Internet. Abstract Information and communication technologies (ICT), with the Internet at the forefront, have the potential to enhance the knowledge, service, employment, development and social interactional opportunities available to people with Intellectual disabilities. Despite this, people with intellectual disabilities are not accessing the Internet to the same degree as people without intellectual disabilities. Issues of safety, risk and protection online for people with intellectual disabilities have yet to be adequately investigated and these currently serve as reasons given for hindering people from gaining online access. This survey aimed to gauge the views people without intellectual disabilities have of risks and benefits of using the Internet for themselves and for people with intellectual disabilities and to compare self ratings of risk and benefits to ratings for people with intellectual disabilities. Results indicate that, with only a small number of exceptions, both the risks and benefits of being online were believed to be greater for people with intellectual disabilities compared with those without intellectual disabilities. Greater use of the Internet was associated with increased perception of benefits to being online for both people with intellectual disabilities and for participants. Perceptions of increased benefits suggests more needs to be done to improve online access whilst a perception of increased risk may help to explain the reduced inclusion of people with intellectual disabilities in the online world. 3 Introduction With the introduction of social media websites such as Facebook and Twitter, millions of people are now able to interact with others instantaneously over the Internet. Being online is now a central part of everyday life for many within society. However, a ‘digital divide’ has been found, with inequality of access to the online world between those without disabilities and those with intellectual disabilities. Hoppestad (2013) highlights how seldom people with intellectual disabilities use technology, particularly those who are adults with more severe intellectual disabilities. Chadwick et al. (2013), in a recent review, reported inequalities in Internet access with fewer opportunities available to individuals with an intellectual disability to go online. Half the respondents surveyed by Palmer et al. (2012) reported that their family member with intellectual disabilities did not have access to a computer, despite feeling that this would be beneficial for them. However, it has been reported that increasing amounts of young people with intellectual disabilities are using the Internet for learning and entertainment (Feng et al., 2008). There is some evidence suggesting that people with intellectual disabilities have much to gain from using the Internet but also may be more at risk (Chadwick & Wesson, 2016). The perception that this group of people may be more vulnerable in experiencing risk online could lead to less support to get online and hence, to lower usage of the Internet. This may also serve to reduce the benefits of being online. However, there is a lack of literature which provides evidence of the non-disabled people’s perceptions of the risks and benefits for this group of people while online. The current paper aims to address this omission. In relation to people with intellectual disabilities, inequities continue to exist despite the potential benefits and opportunities being online can bestow. These include increased opportunities for education, communication, development, creativity and learning, participation and civic engagement, identity development and social interaction and connectedness (Bannon et al., 2015; Chadwick et al., 2012; Chadwick et al., 2013; Livingstone & Haddon, 2009; Näslund & Gardeklli, 2013; Stendall et al., 2011; Stendall, 2012). For example, in a sample of 172 people with disabilities, Shpigelman and Gill (2014) report that Facebook can enable people with disabilities to interact with others, helping to reduce feelings of loneliness. However, it should be noted that the majority of this sample reported having physical rather than intellectual disabilities with the majority of the sample (75.5%) either having or working towards an academic degree. The experiences of this sample may not therefore reflect those of people with intellectual disabilities. However, in a secondary analysis of data for nine older and younger people with intellectual disabilities Näslund and Gardeklli (2013) report that, in cooperation with others, they were able to influence their levels of activity, their agency, their sense of self-esteem and self belief by using ICT. Despite some headway being made here, there remains a general lack of evidence and many of these potential opportunities and benefits remain assumed and empirically unverified for people with intellectual disabilities in the literature. 4 A number of factors have been implicated in this inequity, including: financial and economic barriers; lack of policy and governmental support; lack of training and education to support people with intellectual disabilities to overcome their physical and cognitive impairments; lack of universal design, with Internet sites designed with little consideration of the needs of people with intellectual disabilities; and carers acting as gatekeepers to the Internet who may not themselves be equipped to support people into Internet use, due to their own lack of knowledge and use (Chadwick et al., 2013). This latter point is also supported by Seale (2014) who in a review on the role of supporters of people with learning disabilities, showed that one-to-one support is essential for users to gain the skills needed to engage successfully with technology. The role of the carer/supporter is therefore paramount when attempting to maximise the user’s positive engagement with the Internet. However, societal and carer views of people with disability as being more vulnerable and unable to access the Internet are likely to lead to less support for people with access to the online world (Chadwick & Wesson, 2016; Seale, 2007; Seale, 2014; Livingstone & Haddon, 2009). As Seale, Nind and Simmons (2012) posit, perceived vulnerability, concerns over safeguarding and performance can affect the ways in those providing support think about and apply risk management ideas. In addition to the benefits of being online there are also inherent risks, which have yet to be adequately studied in relation to people with intellectual disabilities. Generally speaking, online risks include engagement in antisocial behavior (e.g. illegal downloading, bullying, uploading sexually inappropriate pictures or text), negative contact online (e.g. having personal information stolen, being bullied, being groomed, unwelcome persuasion) and exposure to harmful, manipulative or exploitative content (e.g. advertising, violent or hateful material, harmful sexual material, extremist or racist information) (Livingstone & Haddon, 2009). There has been little research done on the risks that people with intellectual disabilities experience online specifically. Bujis, Boot, Shugar, Fung and Bassett (2016) have recently reported briefly on some cases where individuals with intellectual disabilities have been victims of sexual harassment and financial exploitation online. Because people with intellectual disabilities are often viewed as more vulnerable, and may have someone gatekeeping their Internet access, issues of protection and control arise. The guidance and warning those with intellectual disabilities receive around online access remains unstudied. Drawing on literature focusing on physically disabled adolescents, Lathouwers et al. (2009) found that they were more likely than their non-disabled peers to be warned of the risks of the Internet by their parents and were more likely to have restrictions placed on their Internet use. Volunteer training of people with intellectual disabilities to stay safe online has been investigated in a qualitative study by Seale (2003). In this study it was apparent that those providing support took control over decisions regarding what was safe and acceptable online content for people with intellectual disabilities to access. These findings support the notion that those with intellectual disabilities are more likely to be viewed as needing protection online, although this supposition has also not yet been empirically verified. Alongside perceived vulnerability, attitudinal beliefs held by society about people with intellectual 5 disabilities focusing on their deficits (Goodley, 2005; Dagnan, 2008) and viewing them as eternal children (Pueschel & Scola, 1988) may also underpin barriers that hinder online access. According to Adger (2006), vulnerability is the “state of susceptibility to harm from exposure to stresses associated with environmental and social change and from the absence of capacity to adapt.” (p. 268). This definition puts groups lacking capacity automatically in the category of vulnerability, however it can be argued that with necessary supports people, such as those with intellectual disabilities, should not automatically be labelled as vulnerable. For these people the capacity to adapt becomes a composite of people’s own resources and the support they receive, hence this capacity to adapt is mediated by the support provided or sought by an individual. Perceptions of vulnerability are predicated upon the probability of exposure to, in this case, risks in the online world. As yet this perceived likelihood has not been adequately considered in the research literature. Although there are numerous sociological, psychological, statistical theories conceptualizing risk and vulnerability (e.g. Adger, 2006; Reyna & Rivers, 2008; Zinn, 2006), it is beyond the scope of this paper to consider them all. However, some recent discussions in the literature have focused on the notion of ‘positive risk taking’ as an approach that may aid understanding and enhance online inclusion (Seale, 2014). This approach, within the context of online access, can be used to enhance wellbeing of people with intellectual disabilities through increasing opportunities for choice making in relation to the ways they wish to live their lives. Risk is not avoided, but instead acknowledged and managed and potential harm, failure or disappointment is viewed as less important than the potential for growth, self-determination and wellbeing that may occur through successful risk taking (Alaszewski & Alaszewski 2002; Morgan 2004). A qualitative interview based study of 10 young people with intellectual disabilities and 12 staff members about their use of the Internet revealed that risk perceptions differed considerably between the two groups (Löfgren-Mårtenson, 2008). The staff were protective and worried about the risks involved in being online, underpinned by their preceptions of the young people as ‘gullible’. Conversely the young people were aware of online risks but focused mainly on the risk of exclusion from the online world and how this would prevent them from being like others. It is important to note that the exclusion, risks and benefits outlined above could apply equally to other groups, for example, Peacock and Künemund (2007) report on a sample of 16,161 European senior citizens aged 55 years and over. Of this sample only 16.8% reported using the Internet. Some of the reasons provided for non-usage related to the absence of skills and the perception that the Internet is too complicated for them to use. These findings accord with factors influencing online exclusion of those with intellectual disabilities (Chadwick & Wesson, 2016). Moreover it cannot be assumed that the use of and gains made by people with intellectual disabilities online will necessarily be different from other groups (e.g. Seale, 2001), though this question warrants more explanation. In this study we consider whether there 6 exists a perception that online experiences of risks and benefits will differ amongst non-disabled people. Like other groups in danger of exclusion from the online world, current evidence suggests a belief that people with intellectual disabilities potentially have much to gain from engaging in online learning and social activities but also that people with intellectual disabilities may also be at more risk online. However, these beliefs have yet to be empirically verified. In addition, little is known about non-disabled perceptions of the personal risks and benefits associated with use of the Internet and how these compare to perceptions of people without intellectual disabilities. Moreover, how beliefs regarding risks and benefits relate to Internet use is as yet unstudied. The media’s tendency to over-emphasise the dangers of cyberspace is likely to inform attitudes (Thurlow, 2006). A greater understanding of the non disabled people’s views on this subject is a first step towards identifying potential biases, prejudices and discriminatory beliefs that members of the public may hold about Internet access to people with intellectual disabilities. These may underpin behavioural and control barriers to accessibility. To this end, this study aims to address these omissions and to the answer the following research questions: 1. What risks and benefits are perceived to be more likely to affect people with intellectual disabilities by people without intellectual disabilities? 2. How do the perceived risks and benefits for people with intellectual disabilities of being online compare with self ratings for the risks and benefits perceived for people without intellectual disabilities? 3. How does Internet use relate to perceptions of online risks and benefits both for oneself and people with intellectual disabilities? 7 Method Survey Design This quantitative study employed a descriptive survey to gather data regarding Internet use and self ratings and ratings for people with intellectual disabilities about the risks and benefits of being online. Demographic and background information was also gathered in the survey and are reported in Table 1. The remainder of the survey contained closed questions relating to Internet use and perceptions of the risks and benefits of being online. There was no external funder for this research study. Internet use Participants were asked to indicate how often they used the Internet for 11 different activities (e.g. Social Networking, Blogging). Responses were given on a 6-point Likert scale ranging from ‘Never’ (scored 1) to ‘Every day’ (scored 6). The responses from these 11 activities were averaged to provide a score of ‘internet use’. The scale had good internal reliability, Cronbach’s alpha = .69. Perceptions of risks and benefits The list of potential risks and benefits were adapted from Livingstone and Haddon (2009). Adaptations included ensuring that the questions were appropriate to adults and incorporation of questions more relevant to people with intellectual disabilities (e.g. opportunity to engage with online advocacy groups). Participants were provided with a list of 24 potential risks (e.g. being bullied or harassed) and asked to indicate the degree to which they perceived each to be a risk to themselves and the degree to which they perceived each to be a risk to people with intellectual disabilities. Responses regarding the likelihood of the risk occurring were given on a 5 point Likert scale ranging from ‘No Risk (scored 1) to ‘Very high risk’ (scored 5). Responses were averaged to provide a mean scored of the self ratings of potential risks to the participant and a mean score of ratings of potential risks to people with intellectual disabilities. The scale was found to be internally reliable, Cronbach’s alphas = .94 for both perceptions of risk. Participants were also provided with a list of 28 potential benefits and asked to respond in the same way as described above (‘No benefit’, scored 1; ‘Very high benefit’ scored 5). As with the perception of potential risks, a mean score was calculated for the participant self ratings and for ratings of people with intellectual disabilities. Both benefit scales were found to be internally reliable, (Cronbach alphas = .95 for the participant self ratings and .94 for perceptions of people with intellectual disabilities). Participants 8 An opportunity sample of 166 members of the general population (78.9% Female, N=131; Mean age = 25.35, SD=10.39) who did not have intellectual disabilities was recruited into the study via an advertisement circulated via local and national email distribution lists, online forums and public notice boards. The majority of the sample described themselves as either British, dual heritage or European (Table 1) with the others reporting that they are Black, Indian, Pakistani, Bengali, Asian and mixed race. The majority of participants had post-school qualifications. Diversity was evident in the extent to which people reported coming into contact with people with intellectual disabilities, with around one third of participants coming into contact with people with intellectual disabilities regularly (34.1%, N=57), 15.1% (N=25) having monthly contact and half of the participants (50%, N=83) seldom coming into contact with people with intellectual disabilities. A number of respondents were parents (22.9%, N=38) and many participant households had children living in them (39.2%, N=65). The mean number of people living in respondent households was 3.87 (SD=1.53). Table 1: Participant demographic and background characteristics Variable N % Self defined nationality/ethnicity (N=149) White British, Dual heritage or European 102 68.5 Black 8 5.4 Indian 17 11.4 Pakistani 5 3.4 Bengali 1 0.7 Asian 6 4.0 Mixed race 10 6.7 Education (N=153) Left school at 16 years or younger 3 2.0 Post school higher qualification (e.g. A level, Diploma etc.) 127 76.5 Degree level Education 9 5.4 Postgraduate qualification (e.g. MSc. PhD etc.) 14 8.4 Contact with People with LD (N=165) Regular (>Monthly) 57 34.1 Monthly 25 15.1 Seldom (

Perceived online benefits and opportunities for people with intellectual disabilities For people with intellectual disabilities, social and support related online activities were viewed as most beneficial, comprising the social opportunities to engage with social groups and maintain friendships and the support opportunities to participate in support groups and access and use advice sites (e.g. those pertaining to benefits, health, relationships etc.) Online developmental opportunities were viewed as most beneficial in selfratings, these included finding out and being inspired to try new things and finding out about educational and work opportunities (e.g. college courses). The latter of which was one of only two opportunities rated by respondents as one of the greatest benefits for both themselves and for people with intellectual disabilities. The other shared benefit was the social opportunity to keep in contact with friends and family online. A final benefit rated as highly beneficial for respondents was the supportive role of being there to help support friends. Notably, some of the benefits perceived as highest for respondents themselves were rated as more highly beneficial, though not the most beneficial aspects of being online for people with intellectual disabilities. The majority of respondents rated all of the potential online opportunities as highly likely to be beneficial for people with intellectual disabilities. However, the aspects viewed as least likely to be beneficial were that people with intellectual disabilities could say things they would find uncomfortable saying face to face online, develop perspective taking, decision making and critical thinking skills, and gain a sense of who they are. This latter benefit being one of the lowest contradicts the literature reporting benefits to identify formation online (e.g. Bannon et al., 2015; Chadwick et al., 2012). The benefits that more typically aligned with the lives of people with intellectual disabilities were rated as some of the least beneficial for participants themselves (i.e. the Internet giving opportunities to participate in support and advocacy groups), sharing information about their lives with others and developing social and decision making skills were the other benefits of Internet use rated least likely. The latter of which was the only overlap in the benefits viewed as one of the least likely for both of the two groups. Perceived online opportunities and benefits: Comparing self ratings and ratings for people with intellectual disabilities? Analysis using a repeated measures MANOVA revealed a main effect for group rated, with ratings of benefits being higher for people with intellectual disabilities compared with self ratings (F(1,157)=75.08, p.05). Looking at the individual online activities, use of social networking sites, general web browsing and shopping were the three online activities most strongly related to a belief in online benefits (intellectual disabilities: r(161)=.22, p=0.005; r(160)=.0.16, p=.045; r(159)=0.16, p=.049, respectively. Personal: r(157)=0.31, p.05). Having children in the household positively correlated with perceived benefit to being online for people with intellectual disabilities (r(160)=.19, p=.02). Female respondents were also more likely to perceive greater online risk for themselves when compared with male respondents (t(156)=-2.0, p=.049). 13 Table 2: Showing the mean risk ratings for online risks for people with LD and participants and the proportion of participants rating the risks as low, moderate or high for the two groups People with Intellectual Disabilities Personal Ratings (People without ID) Risks M SD Low Mod. High M SD Low Mod. High N % N % N % N % N % N % Being bullied or harassed 3.68 0.89 14 8.4 46 27.7 104 62.7 2.29 0.87 107 64.5 43 25.9 11 6.6 Communicating with people not known to them or their families 3.51 0.92 18 10.8 59 35.5 87 52.4 2.39 1.04 96 57.9 44 26.5 23 13.8 Being exposed to inappropriate or offensive adult pornographic content 3.35 1.04 27 16.2 65 39.2 72 43.4 2.46 1.18 93 56.0 38 22.9 32 19.3 Being exposed to inappropriate material relating to drugs 3.08 1.10 54 32.5 51 30.7 59 35.5 2.39 1.18 95 57.2 38 22.9 30 18.0 Being exposed to material which encourages antisocial or extremist behaviour 3.02 1.06 50 30.1 62 37.3 52 31.3 2.36 1.05 95 56.2 45 27.1 23 13.8 Providing too much personal information 3.83 0.99 14 8.4 40 24.1 110 66.3 2.25 1.02 107 64.5 36 21.7 20 12.0 Meeting up with someone offline who they have made friends with online 3.45 1.11 33 19.9 46 27.7 84 50.6 2.21 1.16 105 63.2 33 19.9 25 15.0 Being threatened 3.57 0.97 23 13.8 49 29.5 92 55.5 2.48 0.96 90 54.3 50 30.1 24 14.4 Missing out on face to face interactions 3.31 1.05 35 21.1 49 29.5 79 47.5 2.26 1.13 105 63.2 32 19.3 26 15.6 Affecting physical health by spending too much time on social networking sites 2.92 1.03 56 33.7 61 36.7 47 28.3 2.31 1.08 95 57.2 44 26.5 24 14.4 Becoming addicted to using social networking sites 3.29 1.03 38 22.9 55 33.1 71 42.7 2.62 1.21 77 46.4 45 27.1 42 25.3 Spending less time on work, learning or personal development 3.27 1.00 31 18.7 70 42.2 63 37.9 2.72 1.17 66 39.8 53 31.9 44 26.5 Become involved in bullying others 2.40 0.97 98 59.1 44 26.5 22 13.2 1.79 0.98 132 79.5 22 13.3 10 6.0 Spending less time with family 2.87 0.97 55 33.1 68 41.0 41 24.7 2.44 1.17 91 54.8 41 24.7 31 18.7 Being exposed to inappropriate or offensive violent or gory content 3.20 1.01 37 22.3 71 42.8 55 33.1 2.55 1.18 73 50.0 51 30.7 30 18.0 Being susceptible to online marketing scams 3.66 1.03 20 12.0 48 28.9 96 57.8 2.26 1.04 110 66.3 34 20.5 20 12.0 Being stalked 2.95 1.05 60 36.1 54 32.5 49 29.5 2.44 0.93 88 53.1 62 37.3 13 7.8 Developing or writing harmful online content 2.65 0.94 74 44.5 66 39.8 24 14.4 1.88 0.99 123 74.1 32 19.3 9 5.4 Being ‘groomed’ for sexual exploitation or abuse 3.46 1.01 25 15.0 57 34.3 82 49.4 1.92 1.03 121 72.9 29 17.5 13 7.8 Becoming involved in using online gambling sites 3.00 1.09 58 34.9 56 33.7 50 29.3 1.96 1.05 119 71.7 31 18.7 14 8.4 Engaging in copyright infringement and illegal downloading 3.09 1.13 49 29.5 59 35.5 56 33.8 2.52 1.22 91 54.8 37 22.3 36 21.7 Having their personal data misused by other people 3.54 0.93 15 9.0 68 41.0 81 48.8 2.64 1.03 83 44.0 62 37.3 29 17.5 Having their accounts hacked 3.47 0.94 25 15.1 55 33.1 84 50.7 2.82 0.98 56 33.7 76 45.8 32 19.3 Inadvertently downloading spyware or malware (e.g. viruses) onto their computer 3.57 0.98 19 12.6 54 32.5 89 53.6 2.68 0.99 72 43.3 59 35.5 33 19.9 Note 1: For individual risks paired sample t-test comparisons all significant at p