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Thread: Part One - Social Media and Our Families, Is Facebook Good or Bad?

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    Default Part One - Social Media and Our Families, Is Facebook Good or Bad?

    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
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Donna))))))

    A very interesting topic, at least to me, as a lifelong student of communication.

    When we first connected to the internet in 1999, I was fascinated by the ability of people around the world to communicate with each other on any of a gazillion topics. I read message boards and discussion forums on a variety of sites and realized that people could be quite bold, when they were anonymous behind a computer screen.

    The internet and texting have affected our language, our ability to spell, our willingness to open up about our private lives to perfect strangers, and it has altered communication dramatically.

    For a multitude of reasons, I don't venture into all of the venues available. I don't want my privacy compromised any more than it is, nor do I want someone becoming a billionaire from selling my information, my preferences, my demographics. It's impossible for me to say anything in 140 characters! And, I just do not have the time to devote to a variety of internet communication modes.

    I'm old fashioned and I like best what I started out with: the discussion forum, particularly Braintalk (obviously). I prefer this format, because it allows us to flesh out our topics in an organized manner. The non-BT forums, where I've been a member through the years, have all been related to medical issues or grief. I am honored that I have made some life-long friends through those forums. And I've met many wonderful people, with whom I'd love to continue communicating, if they would only return here to CN.

    Like you, I remember when the internet didn't exist. I worked the phone mightily to advocate and to gather parents of special needs students in my sons' schools, so that we could share our experiences and debrief together. But that was hard going for most of us, whose kids had intense needs, and most of whom were single working moms, like me. How I wish I had Braintalk all of those years! Or even just email.

    You are a "real" friend to me too, Donna. We have been through quite a bit together with our boys through the years, and that sharing and understanding continues to bring us closer. I hope that we will meet face to face someday, but if we aren't that fortunate, I know that our friendship will still be strong.

    That is a wonderful by product of the internet!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Hi Rose, I'm happy that you recognized this somewhat muddled (for privacy purposes) version of your family in my post - and I was thinking of Tracy and Micky when I wrote it too. I send all my dear friends here on CN2 my wishes for a day free of crises, free of seizures and only soothing, happy moments strung together to make a day.

    xoDonna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    This is a really great topic for discussion! I do spend a lot of time on fb, BUT it is typically in the evening after my kids are in bed. Before fb, that time was spent on braintalk and before that it was prematurely yours....and before that it was the Days of Our Lives (soap opera) discussion board (I had way more free time before kids, lol!). It's been a LONG time now that I have given up all the soap operas by the way....and pretty much all other tv. Too much to do with so many kids.

    One thing I love about communicating online about caring for Caitlin is that I can do it at my convenience...can read/post a little or a lot depending on the way I am feeling or what I am busy with. A LONG time ago I actually met someone from here in person, it was a little awkward actually! A nurse's aide walked us out of the local hospital to our car after C had something done (I can't even remember what it was so long ago) but something she was talking about made me ask if she posted on braintalk and I said that I did too, I was 'andromeda31'. She didn't seem too excited to meet someone live. (I haven't seen any posts from her in a few yrs so I feel ok saying). I can understand a little bit...when I signed on to BT, I picked that name to keep anonymity (sp?), and after awhile I started putting pictures up of C in my 'signiture' and signing posts with my first name/last initial. I felt more comfortable sharing more of myself over the years as I got to know everyone. I can remember when I joined fb, talking with my best friend about accepting friend requests from my BT friends...I wasn't sure about giving up privacy at first. I mostly had family and high school friends as fb friends. Now I actually have the opposite privacy problem....on fb, I have created a 'braintalk' group with just braintalk friends on it and my hubby, sister, and best friend so I can post about C in more detail than I want my family and local friends to see. I hate having to censor myself but I was hearing from my mom (who refuses to get online) that I was being talked about by other family members who don't know me very well (distant cousins and such-I have like 30 first cousins!). I was a little annoyed by that and also my mil overly worries (though I know it is from love) about C and would worry too much when I would post stuff. Now with setting up the BT friend list, I can still post what I want about C's medical goings on and just set the privacy of that post to 'Braintalk'. So far so good! I've been still trying to post here too, just thinking I should cut & paste some of my 'bt' posts here too like Donna does with the blog posts.

    It's interesting how much easier it seems to be to make 'neuro' friends online vs locally. I was part of the special ed PTA at Caitlin's school, but that kindof peetered out. I think it was hard for parents to get to the meetings which were only quarterly, even I had trouble attending and my life was less hectic then. Now it would be impossible. I know other parents from school and stuff, but mostly it is a wave or quick hello in passing. I can't imagine not having 'online' as an option...I would not have anyone to talk to about all this medical stuff! Well, I do talk a lot to my best friend (we try to scrapbook every other friday night) and she is a great listener but it is still nice to talk with people in the trenches with you. I don't think online makes me lonelier....I am pretty outgoing...I bartended for 3 years when I was in school so I have no problem talking with people! :) I think internet enhances my life a lot! Though I probably would go to sleep earlier if I didn't have stuff to read on the internet. As I type it is now 10:54pm...so much for early to bed. But I am still wound up from my day which is the subject for another post!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Hi Lisa, Thank you so much for your experience and reflections! I haven't figured out the friending thing here on Braintalk. It's all a puzzle of what works and what feels comfortable isn't it? And it's so interesting how we use different tools in different ways based on what we want to disclose. The relationships we have online vs face to face is fascinating.

    Have a great with your gorgeous kids and hope you get a workout;) I'm going to zumba at 9:30 this morning! xo
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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    Hi Donna!

    Got an hour in on the treadmill this morning...hope you had a good time at zumba! I actually haven't used the 'friend' thing on braintalk yet. Not sure how that works. I really like the plain old discussion format for this site. The list thing I was talking about is a newer feature on facebook...it lets you group your friends into different lists so when you post a status update, you can control who sees it. So now, with creating a list of all my 'neuro' friends, I can post about Caitlin and set the privacy to that list of friends so I don't have everyone seeing it. It is a little drop down box in the corner of the status update box. I like not having to 'water down' what I say about her medical stuff now...I can go into detail that I know my neuro friends will understand. Though my mom did nag me this morning that one of my aunts was talking about what I post about Logan's naughtiness now! Guess I can't win. LOL! :) Have a great weekend everyone!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Hi again, Lisa
    That sounds cool on FB, I haven't tried that feature. We have a separate system for communicating about Nick called Tyze - I wrote about it in Part 2 of my social media posts - you can read about it here on CN or on my blog, Tyze is fantastic! Great zumba class this morning~
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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