Shaping the face of your cause: Who holds the power?
As Health Activists, we sift through an array of health information from medical reports and news articles to message boards and tweets. And, personally, as I research more about a disease or health condition, sometimes it takes a personal account or opinion-piece to really communicate the weight of the condition to me. This concept of coming to understanding via someone's personal story made me think about the way we define specific health conditions and disease and what goes into creating a "face" for them. (By "face" I mean public perception or overall idea or impression of the disease or illness).
Today we've got a lot of contributors to shaping the "face" of something. No longer are we in a society where only the "winners" are the ones writing history. Thanks to literacy, education, and modern means of communication, the ones who are writing history and defining our world are among us. The blog or even the twitterfeed has allowed so many people the ability to express themselves and tell a story. In the way that oral traditions were once the way people communicated stories of caution, belief, family, and morality, we now have a way to learn from our peers in real time. This opens the door for such a deeper overall understanding of a certain topic, especially, I think, when it comes to defining a disease or health condition.
While, I still believe that those with the loudest voices (or with the most "power" or, more often, money) have the widest impact, these voices are often softened by our collective contributions. Our impact might not be as wide as corporations or celebrity, but I think our impact has the potential to be deeper. Anyone with a thought and a computer can reach thousands of people instantly, and leave just as strong an impression. (Therein lies the concept of "social media.") And, yes, there is danger in this. But, at least for our own work as Health Activists, this is such an exciting opportunity. Instead of learning about diseases or health conditions from only doctors or people who are in our immediate families, we have access to a whole spectrum of new information. Disease and health conditions are being defined every day by the collection of stories and conversations we are having.
How have you seen the "face" of a health condition or disease change because of discourse of patients, messageboards, twitter, blogs, support groups, or other new media conversations? How so?
How does hearing a personal account deepen your understanding of an illness?
When are our voices most important?
Can having access to so many stories be dangerous?
How do you sift through the wealth of information you come across in your research?
How can we help to define our health causes in a world where so much is going on at once?
Who has the power?
Have others in your health communities discussed this? What are people saying?
I look forward to hearing how your particular communities are working to redefine an illness or condition and if you have any tips for other, younger or less organized health communities to do the same.
Today we've got a lot of contributors to shaping the "face" of something. No longer are we in a society where only the "winners" are the ones writing history. Thanks to literacy, education, and modern means of communication, the ones who are writing history and defining our world are among us. The blog or even the twitterfeed has allowed so many people the ability to express themselves and tell a story. In the way that oral traditions were once the way people communicated stories of caution, belief, family, and morality, we now have a way to learn from our peers in real time. This opens the door for such a deeper overall understanding of a certain topic, especially, I think, when it comes to defining a disease or health condition.
While, I still believe that those with the loudest voices (or with the most "power" or, more often, money) have the widest impact, these voices are often softened by our collective contributions. Our impact might not be as wide as corporations or celebrity, but I think our impact has the potential to be deeper. Anyone with a thought and a computer can reach thousands of people instantly, and leave just as strong an impression. (Therein lies the concept of "social media.") And, yes, there is danger in this. But, at least for our own work as Health Activists, this is such an exciting opportunity. Instead of learning about diseases or health conditions from only doctors or people who are in our immediate families, we have access to a whole spectrum of new information. Disease and health conditions are being defined every day by the collection of stories and conversations we are having.
How have you seen the "face" of a health condition or disease change because of discourse of patients, messageboards, twitter, blogs, support groups, or other new media conversations? How so?
How does hearing a personal account deepen your understanding of an illness?
When are our voices most important?
Can having access to so many stories be dangerous?
How do you sift through the wealth of information you come across in your research?
How can we help to define our health causes in a world where so much is going on at once?
Who has the power?
Have others in your health communities discussed this? What are people saying?
I look forward to hearing how your particular communities are working to redefine an illness or condition and if you have any tips for other, younger or less organized health communities to do the same.
Tags: discourse, health activists, health communities, social media
-
Comment by Alicia C. Staley on November 24, 2009 at 3:12pm -
Great topic Amanda! Thanks for posting this for discussion. I really feel that having a "face" or person associated with a disease or condition has certainly helped raise awareness and understanding. As a cancer survivor, I've always looked for other survivors - they are my mentors, in a sense. Yes, Lance Armstrong is a great "face" for cancer, but I found that networking and meeting with other survivors has helped me developed a better understanding of how cancer survivorship plays out over the years. There are ups and downs, and I know that's expected by watching my cancer survivor friends continute to live their lives to the fullest. Social networking, in particular Twitter, allows for quicker interactions, allowing cancer survivors to check in daily providing a great support system.
I still feel that we (the people!) still don't have enough power to effect change! How do we support other cancers and other conditions that need more awareness, like brain cancer?
-
Comment by uvmer on November 24, 2009 at 10:14pm - I lost my best friend to brain cancer. For the 18 months she survived, I was her caregiver and was with her 24/7. I was with her through surgery, every doctor’s appointment, every MRI, every radiation treatment, every infusion, every PT/OT appointment, every breath until the last. In all those places, I looked into the faces of patients and their loved ones and saw the fear, sadness and the struggle. It has changed me forever. As I try to deal with incredible grief, seeing those faces in my mind’s eye as well as connecting with and reading the small pieces shared by people who continue the fight, strengthens my resolve to help spare others from the devastating journey my friend and I took. By allowing me the opportunity to share in their personal experiences and thoughts, it helps me in my recovery as well. In their strength, I am finding strength to go forward….the strength that I haven’t been able to find from friends because they truly don’t understand the intensity of a fight with cancer unless they have been touched themselves. On top of that, the articles and blogs that these connections have led me to, have added greatly to my awareness, knowledge, and my desire to learn more and question more. I will be eternally grateful. Thank you Twitter and Twitter friends.
Comment
WHY WE HAVE ADS
© 2010 Created by Marie.
You need to be a member of WEGO Health to add comments!
Join WEGO Health