Living online - Digital community supportBy Jo Southall -
Currently in the UK there are 30 million active users on facebook, 14 million active users on Instagram, 15 million on twitter and 19 million on LinkedIn (McGory, 2016). It’s safe to say that social media makes up a decent chunk of our social lives. We keep in touch with family and friends, share photos and even make business connections. Some of us, myself included, have also found another use for social media. Disability support.
For many people with additional access needs the lack of physical access can seriously hamper social interaction (Matt & Butterfield, 2006) Simply put, having a physical disability makes it harder to get out and socialise which can lead to loneliness and isolation.
Pretty et al., (1994) found that being connected with other people can reduce stress and anxiety as well as improving wellbeing so I think we can all agree that loneliness is a bad thing.
Obst & Butterfield (2006) found that websites developed specifically for people with disabilities can promote a sense of community and provide social support. This social support can be through sharing information, providing guidance or simply making friends. In fact, Fox (2011) found that 1 in 4 internet users with chronic illnesses went online with the specific purpose of meeting people in similar situations.
In my personal experience this is especially true for people with rare conditions, I can’t even begin to explain the sheer joy I felt at finally making a friend with the same condition as me, someone who knew of my struggles without being told.
Being online removes a lot of physical barriers, for many people it provides a great opportunity of be an advocate and to help raise awareness (Thackeray & Hunter, 2010). People who aren’t usually able to shout their message from the roof-tops can do so through social media without the hassle of booking transport and arranging care.
Despite all the benefits, online life isn’t all rainbows and sparkles, there are plenty of challenges and risks associated with online support. The first, and probably most obvious issues is literacy (Hoffman & Blake, 2003). Since online communication is usually text based it can be really hard for people with learning difficulties to join in, the same goes for people with visual impairments (Haller, 2010). Luckily, advances in technology are quickly making the online world more accessible.
Being able to read the text isn’t the only problem, with no body language to go by it becomes much easier to misinterpret the meaning behind things, this can be especially true for people with autistic spectrum disorders (Hoffman & Blake, 2003).
Probably the biggest risk of being online is loss of privacy (Shpigelman & Gill, 2014). Once you feel comfortable online it can be easy to ‘over-share’. Taraszow et al., (2010) found that people often share personal information with strangers as well as friends. The study found that most people on Facebook enter their full name, facial pictures, hometown and e-mail addresses in their profiles. A number of other studies (Acquisti & Gross 2006 ; Debatin, et al., 2009; Lampe et al., 2006) found that young people share their information with strangers regardless of the potential dangers like fraud, bullying and harassment. Many social networks have numerous privacy settings so it’s important to check just who can see your personal information.
The world wide web has made gathering information easier than ever before, just to give you an idea, I researched and wrote this entire article without leaving my sofa. Search engines and patient forums have also made medical information more accessible, it’s easy to find information on every aspect of a condition with just a click of the mouse, any time of the day or night (Shpigelman & Gill, 2014). If you’ve ever taken an internet print out to a doctor I’m sure you were warned that not everything online is accurate, this is backed up by Hardey (2001). That said, many patient forums and groups self-police their information by removing inaccurate stuff and making sure the remaining info is true. Loane & D'Alessandro (2013) researched the online information on Motor Neurone Disease / Ameotrophic Lateral Sclerosis and found that much of the online information was actually quite accurate. Despite this I would encourage all of you to use a bit of common sense when reading things on the internet, take it all with a pinch of salt.
Ciao for now!
p.s. If you'd like to read more from me please pop over to my website.
For anyone who's interested the full list of references can be found below:
- Acquisti, A., & Gross, R. (2006). Imagined communities: Awareness, information sharing, and privacy on the Facebook. Proceedings of the 6th Workshop on Privacy Enhancing Technologies, Cambridge, UK.
- Debatin, B., Lovejoy, J.P., Horn, A-K., & Hughes, B.N. (2009). Facebook and online privacy: Attitudes, behaviors, and unintended consequences. Journal of Computer-Mediated Communication, 15, pp. 83–108.
- Fox, S. (2011). Peer-to-peer healthcare. The Pew Research Center's Internet & American Life Project. Retrieved fromhttp://www.pewinternet.org/Reports/2011/P2PHealthcare.aspx (accessed 27th June 2011).
- Haller, B.A. (2010). Representing disability in an ableist world: Essays on mass media. Louisville, KY: The Advocado Press.
- Hardey , M. ( 2001 ). “E-Health”: The Internet and the transformation of patients into consumers and producers of health knowledge . Information, Communication & Society , 4 , pp. 388 – 405
- Hoffman, M., & Blake, J. (2003). Computer literacy: Today and tomorrow. Journal of Computing Sciences in Colleges, 18(5), pp. 221–233.
- Lampe, C., Ellison, N., & Steinfield, C. (2006). A Face(book) in the crowd: Social searching vs. social browsing. Proceedings of the 2006 ACM Conference on Computer Supported Cooperative Work. pp. 167–170.
- Loane, S.D'Alessandro, S. (2013) Communication That Changes Lives: Social Support Within an Online Health Community for ALS. Communication Quarterly. 61(2), pp. 236-251.
- Mallen, M.J., Vogel, D.L., Rochlen, A.B. & Day, S.X. (2005). Online counseling: Reviewing the literature from a counseling psychology framework. The Counseling Psychologist, 33(6), pp. 819–871
- Matt, S. B., & Butterfield, P. (2006). Changing the disability climate: Promoting tolerance in the workplace. American Association of Occupational Health Nurse, 54, pp. 129–134.
- McGory, R. (2016) UK Social Media Statistics for 2016. Rose McGrory Social Media Management. [online]. Available from: http://www.rosemcgrory.co.uk/2016/01/04/social-media-statistics-2016/ [Accessed April 30, 2016].
- Obst, P.Stafurik, J. (2010) Online we are all able bodied: Online psychological sense of community and social support found through membership of disability-specific websites promotes well-being for people living with a physical disability. J. Community. Appl. Soc. Psychol.. 20(6), pp. 525-531.
- Pretty, G. M. H., Andrews, L., & Collet, C. (1994). Exploring adolescents' sense of community and its relationship to loneliness. Journal of Community Psychology, 22, pp. 346–358.
- Shpigelman, C.Gill, C. (2014) Facebook Use by Persons with Disabilities. J Comput-Mediat Comm. 19(3), 610-624.
- Taraszow, T., Aristodemou, E., Shitta, G., Laouris, Y., & Arsoy, A. (2010). Disclosure of personal and contact information by young people in social networking sites: An analysis using Facebook™ profiles as an example. International Journal of Media and Cultural Politics, 6(1), pp. 81–102
- Thackeray, R., & Hunter, M.A. (2010). Empowering youth: Use of technology in advocacy to affect social change. Journal of Computer-Mediated Communication, 15, pp. 575–591