Journal of Computer-Mediated Communication
Facebook Use by Persons with Disabilities∗ Carmit-Noa Shpigelman Department of Community Mental Health, Faculty of Social Welfare and Health Sciences, University of Haifa, Mount Carmel, Haifa 31905, Israel
Carol J. Gill Department of Disability and Human Development, University of Illinois at Chicago, 1640 West Roosevelt Road, Chicago, IL 60608, USA
Social network sites have a potential to empower persons with disabilities. However, this issue has received little attention in research. As a step toward addressing this need, we conducted an online survey about how persons with disabilities use Facebook. We used primarily descriptive statistics and also compared activities relating to nondisabled and disabled friends and groups. The findings indicated that the 172 persons with disabilities who responded to our survey use Facebook much as others do, meaning that they primarily connect with their nondisabled Facebook friends. They have not yet used the potential of Facebook to promote advocacy activities through groups. These findings, including how to mine the potential of social network sites for persons with disabilities, are discussed. Key words: Online Communities, Networks, Behavior, Disability, Access doi:10.1111/jcc4.12059
Introduction The number of people who participate in social network sites (SNSs) such as Facebook, MySpace, LinkedIn, and Twitter has grown rapidly over the past 5 years (ComScore Data Mine, 2012). People use SNSs to create their profile and to build a personal network that connects them to other people (boyd & Ellison, 2007). A survey conducted by the Pew Research Center’s Internet and American Life Project indicated that 73% of American teenagers (12–18 years) and 72% of American young adults (18–29 years) participate in at least one online social network (Lenhart, Purcell, Smith, & Zickuhr, 2010). Lampe, Ellison, and Steinfield (2006) found that Facebook users engage in learning more about people they meet offline, and are less likely to use SNSs to initiate new connections. Another study conducted by Pew Internet provided support for this finding and indicated that 91% of American adolescents (12 to 17 years) use SNSs to stay in touch with people they already know (Lenhart & Madden, 2007). Although people use SNSs to communicate more with their offline ‘‘friends’’ than their online ‘‘friends’’ (people that a user chooses to add or exclude from his/her online profile), these networks may provide something beyond communicating with friends. Recently, researchers have begun to explore the benefits associated with continued participation in SNSs. According to a new national study on Americans and social networks, participation in SNSs not only strengthens relationships with close friends, but also provides social support and promotes ∗ Accepted
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political engagement (Hampton, Goulet, Rainie, & Purcell, 2011). Other studies have indicated that participation in SNSs is associated with psychological well-being (Steinfield, Ellison, & Lampe, 2008; Valkenburg, Peter, & Schouten, 2006). Kim and Roselyn Lee (2011) examined the effects of number of Facebook friends and qualities of self-presentation on subjective well-being. They surveyed undergraduate students with a Facebook account and found that their happiness is enhanced when they have more Facebook friends and their positive self-images are better preserved and affirmed through self-presentation on Facebook (e.g., they post photos that only show their happy side or they avoid writing about negative things that happen to them). Confirming previous studies, it was also found that honest self-presentation, including self-disclosure, plays a key role in the development of social relationships in SNSs (Lee, Lee, & Kwon, 2011). Kim (2011) analyzed users’ experiences of Cyworld, a South Korean social network service, and found that in addition to enjoyment, users stay in SNSs as long as they perceive them as useful for increasing their performance towards accomplishment of their goals. The perceived usefulness might be obtained through ‘‘social capital.’’ Putnam (1995, p.67) defines social capital as the ‘‘features of social life – networks, norms and trust – that enable participants to act together more effectively to pursue shared objectives.’’ On one hand, SNSs allow individuals to maintain and extend ‘‘bonding’’ social capital comprised of emotionally close ties such as family members and friends. Bonding social capital enables reciprocity, emotional support, and companionship (Putnam, 2000). On the other hand, SNSs allow individuals to create or maintain ‘‘bridging’’ social capital comprised of what Granovetter (1973) refers to as ‘‘weak ties’’ i.e., relationships that typically take place between individuals who communicate on a daily, weekly or monthly basis, but are not intimate, such as neighbors and service providers. Bridging social capital may provide information or new perspectives to exchange with each other (Granovetter, 1983). Kavanaugh, Reese, Carroll, and Rosson (2005) surveyed households in Blacksburg, Virginia in order to examine the link between community involvement, activities and interests, and Internet use. The researchers found that people with bridging ties across groups have higher levels of community involvement, civic interest, and collective efficacy than people without bridging ties among groups. Moreover, heavy Internet users (more than 1.5 hours per day) with bridging ties have higher social engagement, use the Internet for social purposes, and have been attending more local meetings and events since going online than heavy Internet users with no bridging ties. These findings, in addition to other studies, emphasize the importance of online bridging ties to the individual’s psychological well-being (Abbott & McConkey, 2006; Lasgaard, Nielsen, Eriksen, & Goossens, 2010). Ellison, Steinfield, and Lampe (2007) surveyed undergraduate students to examine the effect of Facebook on the formation and maintenance of social capital. Their survey indicated a strong association between use of Facebook and the creation and maintenance of social capital, with the strongest relationship for bridging social capital. In addition, the researchers found that Facebook usage may contribute to psychological well-being, especially in transition periods when people may experience low self-esteem and low life satisfaction. They concluded that although SNSs do not necessarily remove people from their offline world, they may indeed be used to support relationships and keep people in contact when life changes move them away from each other (Steinfield et al., 2008). The above studies highlight the benefits of participation in SNSs, such as enhancement of social relations and information exchange. It seems that participation in SNSs may also benefit persons with disabilities who might experience social isolation in the real world (Albert, 2006). Morris (2001) interviewed young people with significant health care needs about the social exclusion they experience. She found that the majority of them have limited contact with their disabled friends outside of school. Most of the interviewees said that their contact with nondisabled people was limited to family and service providers. In this sense, Fox (2011) found that one in four internet users (23%) living with Journal of Computer-Mediated Communication 19 (2014) 610–624 © 2014 International Communication Association
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chronic illness such as high blood pressure, diabetes, heart conditions, lung conditions, or cancer go online to find others with similar health concerns. By contrast, 15% of internet users who report no chronic conditions have sought such help online. By participating in SNSs, persons with disabilities who experience various access limitations can expand their communication channels and social circles (Rice & Katz, 2001). For the first time, they may have an equal opportunity to become advocates, including communicating with decision makers, organizing collective action, and raising awareness (Thackeray & Hunter, 2010). As a result, SNSs might contribute to their psychological well-being and to the development of disability identity, self-esteem, and life satisfaction (Ellison et al., 2007). Although SNSs have a potential to empower persons with disabilities, they also present challenges that might lead to negative outcomes for vulnerable or underrepresented populations. One challenge is skill deficiency. Since communication in SNSs is based primarily on text, it might be difficult for persons with intellectual or learning disabilities. A related challenge is the danger of misreading or misunderstanding text-based communication, especially for persons with communication differences, such as those associated with autism spectrum disorders (Hoffman & Blake, 2003; Mallen, Vogel, Rochlen, & Day, 2005). Haller (2010) also discusses the barriers of Facebook for people who have visual disabilities since the pages are designed as uniform templates that make them difficult to manipulate with screen readers. Another challenge is loss of privacy. When using SNSs, people divulge personal information to strangers as well as to friends. Taraszow, Aristodemou, Shitta, Laouris, and Arsoy (2010) examined the type of personal and contact information young people disclose through their profiles. They observed 131 Facebook member profiles of youth (age 13–30). Results suggested that most people regardless of gender enter full name, facial pictures, hometown and e-mail addresses in their profiles. Consistent with previous studies (Acquisti & Gross 2006; Debatin, Lovejoy, Horn, & Hughes, 2009; Lampe et al., 2006), youth, especially between the ages of 18 and 22, seem unaware of the potential dangers (fraud, bullying, harassment) they are facing when entering real personal and contact information in their profiles while accepting ‘‘friendship’’ requests from strangers. In the past, in fact, Facebook users could see, by default, everything that the other users were doing because Facebook assumed that all users want to share all of their information with their global networks. This default setting could harm persons with disabilities, especially intellectual or learning disabilities, who might not know how to change the default ‘‘public’’ setting and limit the access to their personal information. At the end of 2007, Facebook had been urged to improve its privacy settings (Sophos, 2007). By mid-2008, default privacy settings were changed, and members’ profiles, contact information, and additional data are now visible, readable, and searchable by friends only – unless otherwise chosen by each user (Taraszow et al., 2010). Another challenge is that persons with disabilities might have limited access to computers and Internet (‘‘digital divide’’). This might affect their prevalence of participation in SNSs. However, tracking current data published by Pew Research Center’s Internet and American Life Project indicates a dramatic shift in these patterns among underrepresented groups with the recent advent of Internet access via cell phones (smartphones) and other mobile devices (Horrigan, 2009; Rainie, 2012; Smith, 2010). The issue of benefits of participation for persons with disabilities in SNSs, including managing the challenges, has received little attention in research. Recently, the disability community, particularly the National Council on Independent Living and the American Council of the Blind, have protested the lack of representation of persons with disabilities in polls conducted by the Pew Research Center. In addition, few scholars have discussed the issue of SNSs from the perspective of persons with disabilities. As one example, Bricout and Baker (2010) propose an ecological approach of using SNSs to support disaster and hazard preparation and response readiness of persons with disabilities. They argue that 612
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during an emergency event, when local social networks may break down or be inaccessible for persons with disabilities, SNSs may augment the effectiveness of emergency communications through informal information flow, instrumental assistance and support embedded in both bonding and bridging social capital. In addition, online relationships may promote disclosure of personal concern and a greater sense of belonging and, therefore, foster emotional well-being (Wright & Bell, 2003). As a step toward addressing the need for persons with disabilities to be included in online social network research, we conducted a survey about how persons with disabilities (18 years and older) use Facebook, the most popular online social network (Lenhart et al., 2010). According to recent Facebook statistics (October, 2012) one billion people worldwide are active users. Our main research question was: How do adults with disabilities perceive and use Facebook? In addition, we tested if adults with disabilities use Facebook differently when relating to their nondisabled friends and groups compared to their disabled friends and groups.
Method Participants The online survey was distributed though mailing lists of the disability community and disability groups’ walls, a visible space on each Facebook user profile that allows the posting of messages by or for the user. We initially distributed the survey through American organizations, including our university, but we expected and were open to international circulation as online users forwarded links to each other and to websites. We also published the survey in Facebook Ads, an online system that offers relevant and integrated advertising opportunities to engage target audiences. Since the online advertising system is limited to only one target country, we chose the United States since it was estimated to reach the largest population i.e., approximately 140 million adults (disabled and nondisabled). The survey inclusion criteria were (a) being 18 years old and over, (b) self-identified as a person with a disability (any type of disability), and (c) having a Facebook account. We asked that only persons who met the three criteria would log in and complete the online survey. For this study, we defined disability as stated by the Americans with Disabilities Act (1990): The term disability means, with respect to an individual: (A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment. The survey was run online for a 4-month period (April-July, 2011). By the end of the survey period, 307 persons with disabilities had voluntarily and anonymously logged in to the survey. We excluded partial participation (135 respondents), resulting in a total sample of 172 respondents who completed the survey.
Instruments As our survey platform, we used SurveyGizmo, an online software program for designing and conducting Internet surveys. SurveyGizmo was selected for uploading the online survey since it meets accessibility and usability standards, such as Section 508 of the U.S. Rehabilitation Act, or the British Version, the DDA (Disability Discrimination Act). It allows users of screen readers and users with only keyboard navigation abilities to go through the survey. In addition, a study conducted by Ohio State University’s Web Accessibility Center confirmed the accessibility and security of SurveyGizmo. Journal of Computer-Mediated Communication 19 (2014) 610–624 © 2014 International Communication Association
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The online survey included 19 questions across three main sections. The first section consisted of seven questions about the frequency of using Facebook (rated on a 4-point scale) and the number of nondisabled and disabled Facebook friends and groups. The second section included three questions. Two of the three questions focused on online activities and consisted of 19 items that presented different Facebook activities such as sending personal messages, adding friends, commenting on friend’s status update, and posting on groups’ walls. The respondents were asked to rate, on a Likert scale (from 1never to 5- at least once a day), how often they engage in each activity with reference their nondisabled friends and groups. Then, they were asked to rate the same activities with reference to their disabled friends and groups. The second section also included a question consisting of 16 items that focused on how persons with disabilities perceive and experience Facebook, for example: It helps me find others with disabilities; It helps me find people without disabilities; It allows me to practice social interactions; It lets me choose how people see me; I can spend and enjoy my leisure time online. These items were also rated on a Likert scale ranging from 1- strongly disagree to 5- strongly agree. The third section included nine demographic questions such as the respondents’ gender, age, education, occupation, ethnicity, and disability type. We also integrated two open-ended questions that allowed the respondents to have their own voice: ‘‘Is there anything you think is missing from this question?’’ (referring to a 16-item question regarding the Facebook experience) and ‘‘Is there anything else you would like to mention before the end of this survey?’’ The present research protocol, including the online survey, was reviewed and approved by the Institutional Review Board at the authors’ institution.
Data analysis We used primarily descriptive statistics to illustrate the characteristics, self-reported behaviors, and experiences of persons with disabilities on Facebook. In addition, we compared the two types of Facebook activities i.e., activities related to nondisabled friends and groups, and activities related to disabled friends and groups, using paired samples t-test. In both cases, descriptive and inferential statistics, we used the Statistical Package for the Social Sciences (SPSS). We also used a qualitative approach to analyze the responses to the open-ended questions. These responses were dissected into meaningful chunks (words, phrases, sentences, and clusters of related sentences), coded by assigning a category name or brief descriptor (‘‘code’’), and organized into thematic clusters (Patton, 2001). Responses were initially assigned thematic codes independently by the primary investigator. Next, the primary investigator met with another investigator and reviewed coding strategies, defined codes, and developed a list of themes and associated codes, a process often referred to as ‘‘open coding’’ (Strauss & Corbin, 1990). In a second wave of analysis meetings, coding categories were grouped, collapsed where redundant, and arranged into major themes and subthemes to facilitate analysis of thematic interrelationships, a process often referred to as ‘‘axial coding’’ (Strauss & Corbin, 1990). As the analysis proceeded, data were constantly re-examined to determine relationships between thematic categories with implications for theory-building. Results The majority of the 172 respondents were female (70.4%), age 20–39 years (54.1%), and residents of U.S. (78.7%) who were Caucasian (77.8%) and have physical or mobility disability (63.5%). However, the respondents could choose more than one disability, and approximately one-third of them (31.2%) reported that they have multiple disabilities such as physical, sensory, communication, intellectual and/or mental disabilities. The majority (75.5%) said that they were enrolled in or had completed an academic degree (bachelor, master or doctorate), and most of them (76.5%) are students, employees, or self-employed. The quantitative and the qualitative results are discussed below. 614
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Table 1 Cross-tabulation of disability and frequency of using Facebook (in numbers)
Disability Physical Visual Hearing Autism Communication Cognitive Learning Mental
Sample size (n)
1- Very rarely
2- At least once a month
3 - At least once a week
4 - At least once a day
101 9 12 8 6 13 23 34
5 1 1 1 2
2 1 3 1 2 1
19 2 2 2 1 1 3 9
75 5 7 6 4 10 18 22
Quantitative results We found that, generally, the persons with disabilities in our sample visit Facebook at least once a day (69%) and use it (44.2%) for up to 30 minutes each time. Approximately half of the respondents (48%) reported having up to 200 Facebook friends but in the context of interacting with friends, the majority (63.2%) frequently interacts with a maximum of 20 friends. A few of them (10.1%) reported that they do not have Facebook friends with disabilities, while the majority reported that they have friends with disabilities: 35.5% have 1 to 10 friends with disabilities, 17.8% have 11 to 20 friends, 16% have 21 to 50 friends, and 20.7% have more than 51 friends. Regarding membership in groups related to disability issues, the distribution of responders who are members of disability groups and those who are not members was very close i.e., 48.5% said that they are members of disability groups (such as independent living centers, disability rights groups, groups that advocate for particular types of disabilities, e.g., ‘‘hidden disabilities’’, and academic or professional disability organizations) compared to 50.3% that are not members of disability groups. As indicated in Table 1, the majority of the respondents across various disability types reported that they use Facebook at least once a day. Among the largest population i.e., persons with physical disabilities (n = 101), 74.3% use Facebook at a frequent rate. Persons with sensory disabilities (visual and hearing impairments) reported using Facebook less frequently than persons with other disabilities i.e., only 50% of them use it at least once a day. In addition, we inferentially tested the hypothesis that persons with disabilities use Facebook differently when they interact with their nondisabled friends and groups compared to their disabled friends and groups. Paired samples t-test revealed significant differences over 18 of the 19 activities on Facebook, meaning that, on average, persons with disabilities use Facebook for connecting with nondisabled friends and groups rather than connecting with their disabled friends and groups. Table 2 presents the means, standard deviations and paired samples t-test (two-tailed) results of Facebook activities (scale of 1–5). As indicated in Table 2, persons with disabilities behave similarly when they tag nondisabled and disabled friends (nonsignificant difference between the two groups). However, they primarily use Facebook for communication and activities with their nondisabled friends and groups such as sending personal messages (t(146) = 6.05, p < 0.001), receiving and reading messages (t(144) = 9.30, p < 0.001), updating their status (t(138) = 6.74, p < 0.001), writing on friend’s wall (t(140) = 6.21, p < 0.001), and posting on groups’ walls (t(138) = 2.25, p < 0.05). The most popular Facebook activities used by persons with disabilities are receiving and reading messages (M = 3.74, SD = 0.92), commenting Journal of Computer-Mediated Communication 19 (2014) 610–624 © 2014 International Communication Association
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Table 2 Paired samples t-test results of respondents’ Facebook activities related to nondisabled friends and groups (‘‘nd’’) compared to disabled friends and groups (‘‘d’’) Activities Send personal messages Receive and read messages Update my status Upload personal pictures/videos Upload funny pictures/videos Upload social and/or political pictures/videos Download applications Add friends Delete friends Write on friend’s wall Tag friend in a picture Comment on friend’s picture Comment on friend’s status update Hit ‘‘like’’ on friend’s update Play games with others Join groups Post on groups’ walls Read groups’ updates Hit ‘‘like’’ on groups’ updates ∗
M
SD
t (df)
3.34 (nd) 2.85 (d) 3.74 (nd) 2.94 (d) 3.43 (nd) 2.76 (d) 2.50 (nd) 2.06 (d) 2.14 (nd) 1.92 (d) 2.32 (nd) 2.15 (d) 1.67 (nd) 1.50 (d) 2.85 (nd) 2.49 (d) 1.93 (nd) 1.77 (d) 3.27 (nd) 2.75 (d) 2.02 (nd) 1.94 (d) 3.08 (nd) 2.71 (d) 3.57 (nd) 3.01 (d) 3.96 (nd) 3.24 (d) 2.19 (nd) 1.85 (d) 2.32 (nd) 2.01 (d) 2.12 (nd) 1.96 (d) 2.63 (nd) 2.27 (d) 2.42 (nd) 2.22 (d)
0.94 (nd) 1.08 (d) 0.92 (nd) 1.15 (d) 1.17 (nd) 1.42 (d) 0.83 (nd) 1.00 (d) 1.01 (nd) 1.02 (d) 1.13 (nd) 1.12 (d) 0.83 (nd) 0.78 (d) 0.77 (nd) 0.95 (d) 0.69 (nd) 0.76 (d) 0.98 (nd) 1.12 (d) 0.90 (nd) 0.93 (d) 1.01 (nd) 1.09 (d) 1.09 (nd) 1.27 (d) 1.08 (nd) 1.37 (d) 1.59 (nd) 1.36 (d) 0.87 (nd) 0.89 (d) 1.09 (nd) 1.01 (d) 1.25 (nd) 1.18 (d) 1.21 (nd) 1.24 (d)
6.05 (146)∗∗∗ 9.30 (144)∗∗∗ 6.74 (138)∗∗∗ 6.32 (145)∗∗∗ 3.29 (141)∗∗∗ 2.90 (142)∗∗ 2.96 (142)∗∗ 4.30 (141)∗∗∗ 3.14 (142)∗∗ 6.21 (140)∗∗∗ 1.18 (140) 4.61 (140)∗∗∗ 6.29 (140)∗∗∗ 7.84 (138)∗∗∗ 3.81 (142)∗∗∗ 4.83 (141)∗∗∗ 2.25 (138)∗ 4.39 (138)∗∗∗ 2.63 (138)∗∗
p < 0.05
∗∗ p < 0.01 ∗∗∗
p < 0.001
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Table 3 Means and standard deviations of Facebook experiences Experiences It helps me find people who like me It helps me find other people with disabilities It helps me find people without disabilities It helps me find new online friends (people that I meet online only) It helps me find new online friends that I might meet face-to-face It helps me find old friends that I have already met face-to-face It allows me to practice social interactions I can disclose my true feelings It lets me choose how people see me I can pretend I am different than I am It lets me choose whom I talk to It gives me an opportunity to join groups of people with disabilities It gives me an opportunity to join groups of people without disabilities It give me an opportunity to contribute to society by participating in online protest activities I can spend and enjoy my leisure time online It lets me play online with others
M
SD
3.19 3.11 3.16 2.77 2.74 4.27 3.00 2.52 3.13 2.25 3.61 3.38 3.29 3.14
1.00 1.17 1.09 1.43 1.29 0.77 1.30 1.19 1.18 1.22 1.03 1.15 1.09 1.23
3.66 2.86
1.11 1.43
Note: We primarily referred to the bold values as important ones since they exceeded 3.5 which implied at least mild agreement (a 5-point scale). on friend’s status update (M = 3.57, SD = 1.09), and hitting ”like” on friend’s update (M = 3.96, SD = 1.08). Regarding general experiences of Facebook, as indicated in Table 3 (scale of 1–5), the majority of the respondents perceive Facebook as an opportunity to find old friends (M = 4.27, SD = 0.77). They also enjoy using Facebook during their leisure time (M = 3.66, SD = 1.11). In addition, persons with disabilities value the freedom to choose with whom they talk on Facebook (M = 3.61, SD = 1.03). In contrast to what some might expect, they are less likely to perceive Facebook as an environment where they can pretend they are different than they are (M = 2.25, SD = 1.22) or can disclose their true feelings (M = 2.52, SD = 1.19).
Qualitative results Fifty-two respondents took time to answer the open-ended questions. Qualitative thematic analysis revealed three core dimensions of how persons with disabilities perceive and use Facebook: technical, socioemotional, and professional. The technical dimension includes issues of security, privacy, and accessibility. The respondents said that they do not like the idea of communicating with strangers online since these strangers can easily get personal information about them, including tagging their names: ‘‘Perhaps something relating to the anxiety it can cause when someone uploads a photo of you or tags you in a status update/note/etc’’; ‘‘Facebook is definitely a great place to connect with others with disabilities, but I normally don’t add people I haven’t had 1 on 1 interaction with.’’ Some of them said that the unsafe and open characteristics of Facebook led them to prefer other online platforms that are limited to subscribers and allow more control of security and privacy settings (Twitter, Dreamwidth or LiveJournal): ‘‘I use my twitter more for talking about disability, because it doesn’t use my real name Journal of Computer-Mediated Communication 19 (2014) 610–624 © 2014 International Communication Association
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and I don’t want to write about ADHD or depression or anxiety on my Facebook because someone might discriminate against me for a job’’; ‘‘Facebook is not a space where I feel comfortable being ’out’ about my disability (despite the fact that I have a very obvious chronic illness and am ’out’ to nearly everyone in my real life).’’ In addition, the respondents shared their concerns about the inaccessibility of Facebook for different disabilities and framed it in their suggestions for future questions: ‘‘To what extent does your disability affect your ability to use Facebook?’’; ‘‘Is it accessible to all disabilities?’’ One respondent referred to the inaccessibility of Facebook in terms of absent guidance: ‘‘Maybe I’m too old (46), but FB [Facebook] confuses me massively. They keep changing how you do basic things so I’m always lost. If I post something on my wall, who will see it? All my friends? Just certain friends?’’ As opposed to the inaccessibility perception, there were respondents who viewed Facebook as an accessible environment in which to conduct interactions. They perceive Facebook as providing easy access to communication, i.e., textbased communication that is also fast and distant and allows them to keep in contact with people that they have already met face-to-face such as friends and family members: ‘‘A lot of my time on Facebook is spent IMing [instant messaging] - there are some conversations I find much easier to have that way than f2f [face-to-face] or over the phone, and which wouldn’t work well as e-mail exchanges’’; ‘‘I like FB [Facebook] because I spend all day on the phone at work. On FB [Facebook], it is acceptable just to comment or like something and go on to the next post--making communication shorter, sometimes more fitting for busier lifestyles’’; ‘‘It keeps me informed about the lives of people I know from previous face to face interaction but don’t talk with that often’’; ‘‘I like to keep up with people I know from real life but now live far away, because know very few people with disabilities here’’; ‘‘It helps me stay up to date with friends who are far away (since travel is . . . difficult at best for me).’’ In addition to the technical accessibility, some of the respondents viewed Facebook as accessible in terms of emotionally distant communication i.e., they can be less involved in the interaction: ‘‘I can interact with others while not wasting energy’’; ‘‘Also it is nicer to talk to people online because I don’t have to worry about paying attention or needing to hear what they are saying.’’ The second dimension -- socioemotional -- refers to getting support and advice through Facebook which in turn may reduce feelings of isolation: ‘‘It reduces my feeling of being isolated and loneliness’’; ‘‘It is my main source of social life as I can rarely leave the house and can just pop online when I feel well enough. It is a good distraction when feeling poorly and cheers me up to have some comments to read.’’ Facebook is also perceived by persons with disabilities as a good way to relax and spend leisure time (enjoyment): ‘‘it is my diversion....thru my feelings . . . for relaxing & upgrades my social being on how to deal with different kind of characteristic of human kind’’; ‘‘I use Facebook to play online games such as Farmville, and that’s it.’’ One respondent summarized it as: ‘‘I don’t know how I lived without FB [Facebook]. I was reluctant to join and then was immediately hooked. My connections have helped me through times of crisis as well as provided companionship when I moved to a new city.’’ In the third dimension – professional -- the respondents viewed Facebook as an opportunity to create, maintain or extend professional networks: ‘‘I use it for alumni services and professional networking.’’ They also use it to get updated information such as news and events related to their profession or disability: ‘‘updates me on events re: disability across the nation and news items I might otherwise never see’’; ‘‘It also is a way to find out what is happening and plan my activities. I also have found sales at stores and businesses’’; ‘‘Professional associations, I use Facebook mostly professionally for school and work. If I didn’t use it I would not be connected to some professional events and my student council.’’ To summarize, our survey indicates that most persons with disabilities who participated in our study visit Facebook at least one time per day and spend up to 30 minutes each time. They have up to 200 Facebook friends and only half of their Facebook friends are members of disability groups. They use Facebook for communication and activities more with their non-disabled friends and groups than 618
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their disabled friends and groups, suggesting that persons with disabilities may find Facebook useful for supporting relationships with nondisabled individuals. They perceive Facebook as an opportunity to find old friends and to spend enjoyable leisure time. They also perceive Facebook as an online environment that provides social, emotional, and professional support. Still, they express concerns about the security, privacy, and accessibility of Facebook.
Discussion The present study explored the perceptions and activities of persons with various disabilities on Facebook through an online survey. Persons with disabilities in our study behave on Facebook similarly to the general public. As is true for all Internet users, SNSs, and in particular Facebook, are most popular with women and young adults in the disability community (Madden & Zickuhr, 2011; Tong, Van Der Heide, Langwell, & Walther, 2008). The majority of respondents have more than the average 130 friends (Facebook statistics) but, like other Facebook users, they visit Facebook at least once a day for a couple of minutes each time (Hampton, 2011). Although a third of them have multiple disabilities, the common disability among our respondents is physical or mobility disability. We also found that respondents with sensory disabilities (visual and hearing impairments) use Facebook less frequently than those with other disabilities (physical, communication, intellectual, cognitive or mental disabilities). This might be related to inaccessible characteristics of Facebook, as indicated by the respondents’ suggestions that we should examine more access-related questions: ‘‘To what extent does your disability affect your ability to use Facebook?’’; ‘‘Is it accessible to all disabilities?’’ As indicated in the literature, SNSs still do not provide full access to persons with disabilities, and especially persons with visual, intellectual or learning disabilities who might experience difficulty in reading and understanding the text-based communication and the difference between private posts versus public posts (Haller, 2010; Taraszow et al., 2010). We also found that persons with disabilities in our study use Facebook primarily to strengthen their bonding ties, i.e., locating and communicating with family members and friends that they have already met face-to-face. It seems that maintaining bonding ties via SNSs contributes to psychological well-being of persons with disabilities, as emphasized by one respondent: ‘‘It reduces my feeling of being isolated and loneliness’’ (Kim & Roselyn Lee, 2011; Steinfield et al., 2008; Valkenburg et al., 2006). This finding provides further support for studies indicating that Facebook users are more likely to communicate with close friends and less likely to use Facebook to initiate new connections (Lampe et al., 2006; Lenhart & Madden, 2007). Although persons with disabilities may not usually use Facebook to establish new friendships, their participation in SNSs is valuable to promote their sense of belonging to the community and to build social supportive networks (Kampert & Goreczny, 2007; Morris, 2001). This is extremely important due to the social inaccessibility that persons with disabilities continue to face. Despite technological progress that allows more access to services, persons with disabilities are often not an integral part of the general community (Longmore, 2003; Michalko, 2002; Morris, 2001). Participation in SNSs may promote their full inclusion into society through extension of their current social networks or development of new relationships. Regarding the use of Facebook to connect with disabled friends and groups, only half of the respondents said that they are members of disability groups and only a third of them have 1 to 10 disabled friends. This finding may be related to the fact that Facebook is perceived by persons with disabilities as an unsafe environment where they might be discriminated against because of their disability, especially when they use it for professional networking. Most of the respondents said that they prefer to use other SNSs or blogs to discuss their disability. They appreciate the freedom to choose with whom they talk on Facebook but still prefer other Journal of Computer-Mediated Communication 19 (2014) 610–624 © 2014 International Communication Association
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platforms to disclose their true feelings. Accordingly, we found that persons with disabilities in our study significantly use Facebook for communication and activities with their nondisabled friends and groups. They primarily use it for one-on-one communication such as sending messages, and especially receiving and reading messages from Facebook friends. They are also involved in their friends’ status through posting comments and hitting ‘‘Like.’’ Also, it seems that persons with disabilities, like the general public, spend more time observing content than actually posting new content (Espinoza & Juvonen, 2011; Pempek, Yermolayeva, & Calvert, 2009). A study that explored the activities of nondisabled youth in Facebook found that the majority (two-thirds) send private messages to friends and over 80% of them post comments, either to friends’ pictures, pages or walls. Similar to our respondents with disabilities, these youth are less likely to be active users on Facebook groups. However, they do use Facebook groups more than persons with disabilities do, i.e., about half of nondisabled youth send group messages. In contrast, persons with disabilities may adopt a more receptive rather than active mode when participating in disability groups, meaning that they use Facebook to receive information about news and events. While there is a general decline in using blogs by nondisabled people, our respondents with disabilities seem to prefer blogs or other online platforms such as Dreamwidth or LiveJournal rather than Facebook groups to share their personal experiences and contact others with disabilities (Lenhart et al., 2010). The question of why persons with disabilities might prefer blogs over SNSs such as Facebook should be further explored in the future. In accordance with the ‘‘weak ties’’ theory of Granovetter (1973, 1983), the bridging ties that persons with disabilities conduct in Facebook with others may empower them and enrich their social life. Persons with disabilities in our study reported that they enjoy spending their leisure time on Facebook. They also use Facebook for communication with professionals. However, our findings indicated that they have not yet mined the potential of Facebook groups to organize advocacy activities and raise awareness (Hampton et al., 2011; Thackeray & Hunter, 2010). Bridging ties in SNSs may contribute to the psychological well-being of persons with disabilities who usually encounter physical and social barriers in face-to-face settings (Abbott & McConkey, 2006; Lasgaard, Nielsen, Eriksen, & Goossens, 2010). SNSs may provide them an opportunity to communicate and receive information and support from others who experience disabilities (Fox, 2011). Bridging ties in SNSs may also promote the development of disability identity, self-esteem, life satisfaction, and social and political changes (Steinfield et al., 2008; Ellison et al., 2007). To summarize, it seems that the persons with disabilities who responded to our survey use Facebook much as others do. They visit Facebook at least daily. The majority of users are young adult women who have physical disabilities. They primarily use it for strengthening their bonding ties i.e., one-on-one communication with their nondisabled friends and family members. They are also empowered by the information and support they get from their bridging ties. However, they have not yet used the potential of Facebook to promote advocacy activities through groups. This may be related to issues of security, privacy, and accessibility. Recent changes on Facebook privacy and sharing settings, intended to make it easier to manage by users, might affect the way persons with disabilities will use it in the future (Taraszow et al., 2010). However, in order to use the potential of SNSs to strengthen bonding and bridging ties, increase disability awareness and promote social change, persons with disabilities should have access to information about how to use SNSs safely and effectively.
Limitations and Future Research The present study included persons with various disabilities who use Facebook. Although we had a sample of 172 respondents, uneven representation of disability types in addition to the fact that 620
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about one-third of the respondents have multiple disabilities, restricted the statistical tests that could be conducted. Our conclusions are limited, therefore, by the non-representative nature of our sample. Future research should distinguish between physical, sensory, communication, intellectual, and emotional disabilities through asking the respondents to choose their primary disability. Studies can also be designed to identify other key dimensions of disability that might affect Facebook use and, therefore, might be important to consider in sampling. For example, individuals who acquire disabilities later in life and who have well-established predisability social networks to maintain may have different SNSs needs or patterns compared with individuals with early-onset or congenital disabilities who have built their networks in the context of disability. Our study relied on the participant’s self-identification to determine disability status. This can be viewed as a limitation in that potential respondents might have avoided the survey because of stigma attached to identifying as ‘‘disabled’’ or because they did not regard their conditions as ‘‘disabilities.’’ We stressed the privacy and anonymity of our survey instrument to address any participant concerns about disclosing disability status, but we cannot rule this out as a factor. Future researchers in this area might try recruiting respondents from established disability pools, such as members of disability organizations or clients of service providers. However, those approaches have limitations of their own because they are likely to be unrepresentative in other ways. Future research should also qualitatively explore the experiences of persons with disabilities on Facebook via personal interviews or focus groups to shed light on interesting questions raised by our results, such as, How do individuals with various kinds of disabilities feel about the state of Facebook technology, including its potential to enhance their capacity to communicate? How has using Facebook supported social integration? What can be done to expand the role of Facebook and other SNSs in supporting political organizing and advocacy? Future research should address the steps that need to be taken to enhance security, privacy, and accessibility of Facebook as well as other SNSs for persons with disabilities. We should compare the needs of persons with different disabilities toward the aim of future improvement of these services.
Acknowledgments This work was supported by the U.S. Department of Education, National Institute on Disability and Rehabilitation Research (H133P060003). The views expressed here do not necessarily represent the policy of the Department of Education.
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About the Authors Carmit-Noa Shpigelman, Ph.D. is currently an assistant professor at the Department of Community Mental Health, University of Haifa, Israel. She is an internationally leading expert on computermediated support in the context of disability. Her research focuses primarily on health promotion of people with disabilities through online support, e-mentoring and social media. Address: Department of Community Mental Health, Faculty of Social Welfare and Health Sciences, University of Haifa, Mount Carmel, Haifa 31905, Israel. E-mail:
[email protected] /
[email protected]. Carol J. Gill, Ph.D. is associate professor and director of the Chicago Center for Disability Research in the Department of Disability and Human Development, University of Illinois at Chicago. She has over two decades of experience working as a clinical and research psychologist, teaches and conducts scholarship in disability studies, and has devoted many years to working as a disability rights and independent living advocate. Address: Department of Disability and Human Development, University of Illinois at Chicago, 1640 West Roosevelt Road, Chicago, IL 60608, USA. E-mail:
[email protected].
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