We all hope to leave behind some sort of legacy, be it something we have created, or information we have gathered, or knowledge which we might have developed.
My wife is a keen photographer and the topic of the storage and preservation of her digital photographic files into the future often comes up as the technology matures. At least these days she has the means of creating backups and copies which can be stored in different places, including the Cloud. During the film era there wasn’t really a viable means of copying a film negative, and storing them safely was an extremely expensive space-consuming and time-consuming exercise. Nevertheless the question still remains, what will ultimately happen to one’s digital files, whether they be photographs or documents?
Technology is constantly evolving but not necessarily making things easier. Twenty years ago one could buy a digital film scanner which could be used to digitise and archive 35mm photographs. Those scanners are no longer made, and to make matters worse the operating systems which they operated under are no longer supported (think DOS and the earliest editions of Windows). Even if you have a scanner (as I do) it will not operate successfully if you do not have a vintage computer to go with it. This dilemma continues to create headaches for film photographers. Fortunately, if one uses only digital cameras, storage space has become cheaper over time and one can now back up data and images to external hard drives which can be stored at different locations for safekeeping.
The photographic example described above serves as an introduction to a concern I have about Internet discussion forums. These not only allow people around the world to engage one another in conversation on various topics but also serve as repositories of information. For the purposes of this article we will focus on the disability discussion forums.
Many forums have existed for more than twenty years, stimulating an active and vibrant interaction across the globe and in doing so attracting a great deal of valuable information and data. Information is shared about health matters, sexuality, the design and construction of housing, diet, relationships, exercise, child care, sport and recreation, travel, access, technology, mobility devices, etc, etc. These are modern-day libraries. Over a period of time the information amounts to a formidable body of work which can prove to be invaluable to disabled people, many of whom are not able to get access to this information locally or personally. Much of this information and data could also be utilised by the medical profession if they so desired. Membership of these forums can often exceed 10 000 individuals, from South Africa to Singapore, England to Ecuador, and Uzbekistan to the United States. All that is required is an Internet connection and a reasonable understanding of English language. The disabled members range from grizzled old veterans who have been there, done that, and have all the T-shirts, right through to the newly disabled for whom the world is suddenly a very different place from that which they had known before. Not all participants are necessarily disabled and often a significant portion of the membership consists of caregivers, parents of disabled children, spouses, etc. Many of these people have a newly disabled person in their family and are desperate to try and find out about current health concerns, future prospects, and how they might be able to assist.
One of the benefits of discussion forum websites is the ability to maintain involvement in a particular discussion thread over an extended period of time. One thread I am currently following started in 2005 and has new information added every day. To date it has had over 43 000 replies and has been viewed more than 2.3 million times! When these discussion forums are disbanded, members often turn to applications such as Facebook to try and continue connecting with people. Unfortunately Facebook’s format does not really provide for continuity of discussions, and as we all know it doesn’t take long before a particular topic slowly slides down the timeline, out of sight and then out of mind. This can also happen inside a discussion forum, but the ability to search for information, categorise discussions into different groups, and force active threads to bubble up to the top of the forum all helps to keep discussion alive. Most of these forums are privately owned, and as with all things the day comes when the owner either cannot afford to maintain the website financially or, sadly, falls ill or dies. This invariably leads to the shutting down of the forum and the subsequent loss of decades of accumulated information. In the last fifteen years I have witnessed at least four major disability forums being shut down. Within a matter of days these resources were switched off forever, their content never to be seen again. New Mobility, ParaQuad, Wheelchair Junkie, Apparelyzed. All gone. Everything lost. The digital dustbin is permanent, and once a website or discussion forum is closed down it never sees the light of day again. I certainly have never seen a website resurrected from the dead.
This brings us to an aspect of managing such websites which is worthy of consideration. There are two philosophies out there. One follows the notion that the individual who owns the domain, website or forum and who pays the bills has the final say as to its continued existence. If I am happy with my forum, it stays. If for whatever reason I am no longer happy, I close it down. In simple terms, it’s my toy and I will play with it as long as it suits me. This works fine until the forum owner gets tired of playing with their toy. Then the game stops, and the tears begin. An alternative philosophy is one that says the “ownership” of the forum belongs to all the people who participate in it. The value of the forum lies in the cross-section of its members and the amount and quality of information they impart to the forum. This philosophy provides for continuity of ownership, provided the original forum owner develops the membership to be able to take over when the owner is no longer able to continue. This is in my opinion a mature philosophy, accepting that what we create might well develop a life of its own which is worthy of continuing once we are no longer around. It provides the framework for a long-term vision, and if the necessary foundations are set in place, the website’s role in the community can continue well into the future.
There is no right or wrong philosophy here. We are, after all, dealing with human beings and we all work differently, have different goals, different expectations, and different attitudes to life. Living in a time where so much of what we create is discarded so easily, it is worth considering that digital information, in the form of websites and discussion forums, is valuable. Due consideration should be given before deciding to pull any plug which might send it to an eternal black hole.