Hi Everyone, Here is a blog post (Part 1) that I wrote about disability and social media. I talk quite a bit about Braintalk in Part 2 and use general conglomerates of my friends here (to keep privacy intact, but I think you will recognize yourselves!)
Stephen Marche's article "Is Facebook Making Us Lonely" in the May issue of The Atlantic pokes a sharp stick at social media and its effect on our sense of social fulfilment. Marche asserts, "What Facebook has revealed about human nature—and this is not a minor revelation—is that a connection is not the same thing as a bond, and that instant and total connection is no salvation, no ticket to a happier, better world or a more liberated version of humanity."
Caregivers know a lot about the difference between loneliness and solitude. Solitude feels delicious - it's when someone you love and trust takes charge of your loved one and brings him or her somewhere fun, somewhere safe. You, as caregiver, can have a long bath or read a magazine. Solitude is your chance to drink the tonic of silence with no one calling for your help. But giving and receiving care can be lonely because the lifestyle is, by its nature, one of isolation. One mother I know from the parent bulletin boards has not been out to dinner for several years. She and her husband look after their 42 year old son in a home hospital setting. Their older son, also affected by the same genetic disease, passed away at the age of 38 four years ago. I feel that I really know this woman, even though I have never met her. To me, she is a real friend. Perhaps that is because our online relationship is not driven by narcissism, but rather a shared experience of caring for our sons with disabilities. When we talk online, we discuss the perils of severe constipation or the side effects of anti-seizure medications. For my online friend and me, the internet gives us a bridge for conversation about our unique, shared experience.
But there are limitations to Facebook and other social media sites too. For people moving to a new city or country, Facebook and Skype can sometimes hinder settlement. One friend, an expat in England, wrote "I found that using Facebook made me very homesick when I moved here. I have seen several young people spend all their free time on Facebook only to get super discouraged and move home without truly making a go at being in a new city..."
Last summer, my daughter Natalie worked as a research assistant to Daniel Miller (author of "Tales From Facebook", amongst other fascinating works exploring the effects of social media on our real time relations). For his newer research project, Dr. Miller was investigating whether Skype helped or hindered the settlement process of new immigrants. That research is still ongoing. One thing is for certain - lonely people will not be less lonely if they use Facebook. People who are not lonely and who use Facebook or other social media sites to enhance their real time relationships report high satisfaction levels with both their online and their real life friendships.
But the inadequacy of Facebook as a tool for intimate communication is starkly illuminated when serious problems befall the real lives of people. When a friend in London was diagnosed with cervical cancer, she reported that Facebook and Skype were too painful to use with her closest family and friends back home. Nothing short of an embrace would heal her frightened heart, so she closed her online accounts and told her children that she needed them to visit.
So, what kinds of social media can be truly helpful to people who give and receive care? That's the subject of tomorrow's post.
For the original post and live links, go to http://donnathomson.blogspot.com