In my recent post "Confronting Tragedy in The Age of Social Media", I discussed the possibility that our blogs, Facebook pages and Twitter feeds, may some day become our opuses, ensuring that our voices will continue to be heard, in perpetuity, by future generations to come.
I want to revisit that assertion, and highlight a fundamentally flawed assumption in my thinking that our digital selves will have an infinite life. In fact, this is only true, so long as our relatives deign to keep access to our online persona available for public consumption, and that whatever corporate entity is hosting our digital selves, remains in business, and has a financial interest in keeping access to our accounts open and free.
Now that's a lot of what-if's to think about and it causes me to pose an extremely important question:
What will really happen to our blogs etc., once we are gone ?
Indeed, it's a question that constantly haunts Gudrun Kemper, a regular reader from Germany, whom I've had the pleasure of virtually meeting via this blog. Gudrun, an extremely accomplished woman and one of the founders of Breast Cancer Action Germany, is also a librarian, a published author of "Jede Neunte" (Each Ninth), a book detailing and recording the breast cancer experiences of twenty-eight German women at the beginning of this century, a member of the board in Arbeitskreis Frauengesundheit (Working Group Women Health, the independent women health organization in Germany) and a member of Netzwerk Frauengesundheit Berlin (Berlin Women Health Network).
Gudrun wonders what will happen to all of our blogs when we are gone without a permanent guaranteed home. In Gudrun's view, the online world is now where history is being written, and this is particularly true in the way that women now go about recording their cancer experiences. There is a vast volume of material out there in cyber-space being written everyday, that represents an important piece of the collective cancer experience and memory, and we are in real danger of losing all of it, if we don't pay more attention to this digital preservation question now.
By sheer coincidence, as Gudrun and I were discussing this very issue of digital archiving over the email this past week, the New York Times ran a feature article over the weekend called "Things To Do In Cyberspace When You're Dead"by Rob Walker, who raises concerns over what happens to our digital persona and body of work after we have gone.
"By and large, the major companies that enable our Web-articulated selves have vague policies about the fate of our digital after-lives, or no policies at all"The article notes further that;
"But increasingly we're not leaving a record of life by culling and stowing away physical journals or shoeboxes of letters and photographs for heirs or the future. Instead we are collectively, busy producing fresh masses of life-affirming digital stuff:...."Gudrun worries that if we leave the responsibility of archiving our blogs to the mercy of commercial corporate web hosting services, we may find our blogs housed in an on-line repository exploited by advertisers for things like oncology drugs, pink-ribbon paraphernalia or other cancer-related services and merchandise. An abhorrent nightmare for many cancer bloggers, including this one, who often rail about the evils of the profit-seeking opportunists who feed off the cancer industry.
What we need and what is echoed in the New York Times article by pioneering blogger, Dave Winer, who terms this issue of online content preservation as "future-safing" is;
"an endowment, a foundation with a long-term charter, that can take over the administration of a Web presence as a trust - before the author dies."In the U.S. this kind of a place might look like The Library of Congress which has been active in creating web archives around specific events (click here to see current web archive projects), although the collection is clearly in its infancy. Another possible candidate may be an organization like Internet Archive, an American non-profit that was founded with the sole purpose of building an Internet library, and also has begun to post web archive collections. Or would the National Women's History Museum be interested in preserving our voices ? Clearly the problems that each of these institutions face in making web content preservation a priority are the huge volumes of global content that currently exist, and the commensurate funding and resources needed to make this kind of preservation work feasible. But at least it's a start.
Think about it this way. If every letter and every story that was ever written about breast cancer in the 1700's was preserved and available to be read, would you be interested in such a collection? Would you think it important to save those women's records from three hundred years ago? Fast forward to two hundred years from now, and I'll wager that our blogs become as important as those 18th century letters and stories.
So what can we do about this? Gudrun and I would like to put this question out to you in the online community. What do you think? Have you heard of any projects aimed at preserving our cancer blogs? What would such a global online cancer blog repository look like? What would be some of the important features? Accessible by anyone? Searchable by cancer-type, by country, by symptoms, by issue? Who should have responsibility for housing this digital warehouse? Should we trust such an endeavor to commercial concerns, or should it only be housed by a non-profit organization? Where would the funding come from?
Obviously there are many, many questions to think about, in positing such a lofty project, but I would like to thank and congratulate Gudrun for being the "Big-Thinker" with this issue. It's not something that I'd ever considered, but since talking to her, I realize the importance of this question of preserving our digital legacy, and that there is no time to waste. We must take responsibility for this now if we are to ensure that our voices will continue to be heard.
Please do take a couple of minutes to share your thoughts on this important issue. What do you think?