Page Utilities
Michael Paul Mason, BrainLine
As the author of a book on brain injuries, I happen to have a lot of friends on Facebook who are survivors of neurotrauma. I enjoy interacting with them and exchanging comments about current events and brain research, but for the past several months, I’ve been interested in how they’ve been using Facebook and other social networking sites.
Most people involved in brain injury rehabilitation know that a brain injury has a terrible effect on a person’s social life. After the injury, it’s much harder to get out and meet people, and so it becomes even more challenging to maintain old relationships and create new ones. But after observing some injured friends using Facebook, I suspected that social networking might play an important role in the recovery of our social lives following injury.
In October of 2009, I sent out an informal, ten-question survey to brain injury survivors using my Twitter and Facebook accounts and was surprised to receive more than 50 responses in a matter of days. In a nutshell, I learned that:
- 88% of respondents use social networking daily
- 71% spent more than three hours a week using a social networking site
- 60% rated social networking as either “very important” or “essential”
- People claimed they had an average of 165 online friends
Interestingly, some 80 percent of respondents also suggested that visual problems create a significant challenge to their computer use, and about 20 percent of respondents said they needed some kind of technological aide in order to use their computers.
But most fascinating of all were the passionate comments some people left about their social networking experience:
“Because of my brain injury, I am no longer capable of holding a full-time position. Social networking has kept me connected to the outside world and relationships.”
“I like the freedom and the fact that people get to know me, not my injury. Sometimes the visual appearance of my injury leaves me feeling awkward — or the inability to react quickly in a conversation. I don't want to be treated like I am special; I don't want to be pitied. Online I get to be just me.”
“Prior to joining Facebook, I was almost completely socially isolated. “This experience has not only helped me socially, but by continued use of the computer I have gained new skills, diminished depression, gained in confidence and self-assurance, and have begun limited work again. Most of my family members live thousands of miles from me — now we can contact each other daily if we want. I no longer feel disconnected from the world. I can honestly say that this experience has increased the quality of my life beyond any other since my brain injury.”
More than 30 survey comments indicated that social networking played a valuable role in the lives of people who have sustained a brain injury. So what are the implications of these early findings?
Social networking may offer a way for survivors to slow or even reverse the social upheaval caused by brain injury. It will be up to researchers and rehabilitation professionals to begin studying the correlations between social networking and life satisfaction. They will also need to address the physical and cognitive barriers to computer use, and ultimately determine if social networking skills should be taught at some phase of recovery.
One thing is clear: people with traumatic brain injury are already using Facebook, Twitter, and other sites to supplement their social lives, and they’re doing it largely without professional help. At the least, social networking is an important phenomenon that deserves a closer look as a potentially therapeutic tool for anyone with a disability.
Michael Paul Mason is an author as well as a contributing editor to Discover magazine, where his science reporting has taken him into Iraq and behind Vatican walls. His first book of literary non-fiction, Head Cases: Stories of Brain Injury and Its Aftermath (Farrar, Straus & Giroux), chronicles the extraordinary plight of people who have sustained a brain injury. Mason has also served as an editor for two literary publications, and has appeared on several national media outlets, including the Newshour with Jim Lehrer, the Diane Rehm Show, CBS News, and NPR's Morning Edition. He remains active as an advocate for people with brain injury. Learn more at www.michaelpaulmason.com.
Comments [9]
thank an outstanding artical as i am a TBI patient an am still in hospital and i must admitt facebook is a great website for socialising as i paralized half my vocal cords so i shound like a somewhat stranded whale, and i have agree it alows me to communicate with being treated "special" as i am 19 about to go to university an sure i have more grey matter then half the people i have to deal with. as for how i sustained my injury i was a backseat oassanger in a car crash which hit two trees then fell 15 feet onto its lid, i broke my nose an 3 ribs an bit through my bottom lip,collapsed a lung fractured my jaw and sinuses and paralised my vocal cords open as well as 6 bleeds on the brain, as for facebook its great for dismentling my depression
Thank you for this article. I am using it along with other research to push the rehab center that I employed with to consider the benefits of social media. If the person who commented on Dec 19th happens to read this, I was wondering if he/she ever explored computer adaptive software like Zoomtext to aleviate any of their visual symptoms. His/her rehab services may be able to provide some technological training to make internet use easier...
Facebook is a useful tool for some, but it assumes the ability to use a computer in the first place (and afford one, plus internet access etc.) which unfortunately leaves out a large number of TBIs. This study is in this respect self-selecting. Personally, I found Facebook (and Myspace before it) more trouble than it was worth. I can't work at a puter for more than 1/2 hour at a time and usually forget what I've done the previous session. I've been 10-plus years TBI and met many many like me who get overstimulated easily, lack basic computer skills and have such cognitive (and often physical) issues that would make social-networking a la Facebook impracticable. Don't get me wrong: it's a great tool for those who have the time and resources (in all senses of the word). But I find nothing here to substantiate the "therapy" claim and suggest the sample is way skewed toward the more high-functioning TBIs.
Really hit home for me. Had a slew of visitors while still at the hospital but they dried up pretty much after returning home. We need contact with the outside world to continue healing! Just got to be careful where it leads. Led me to an old girlfriend who had a more sympathetic ear than I had at home and got me invited out of my house and on the way to a divorce. Problems had been there before but were compounded by my homebound and isolated situation.
Previously, before my TBI,I was pretty active socially, in fact in college I was an elected social leader. I think Facebook provides a unique and beneficial avenue to travel down when you want to make social connections with out having to meet face to face. Because you don't have to meet in the first person, that only expands the number of people who can appreciate your thinking from afar. Social networking is a quick and easy way for me to keep in touch and updated.
This article is very true. I started a group site on FB with TBI site talking to other TBI survivors. The group is growing.The name of the group site is: Traumatic Brain Injury Survivors. http://www.facebook.com/group.php?v=app_2373072738&gid=186439572629#/group.php?v=wall&gid=186439572629
Your article is so true and I am an example of it. David Glenn Briggs
FABULOUS MICHAEL!!!!!!! Jennifer Adams
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Message from a New Zealander - The internet is a main area of rehabilitation in my life. A brain injury effected my world dramatically and Facebook kept those fragmenting relationships in tact. Everyone has a mountain to climb and many people didn't understand my daily disability. Communicating via cyber has become an amazing balance of the two. The correspondence world became greater with greater learning and finding kindred spirits. REMEMBER TO BE SAFE ON THE NET. People with disabilities can be vulnerable. Take Care.
May 16th, 2010 7:08pm