MDF Magazine Issue 72 December 2023

We all hope to leave behind some sort of legacy, be it
something we have created, information we have gathered,
or knowledge we have developed.
My wife is a keen photographer, and the topic of storing
and preserving her digital photographic files 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 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 35 mm 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 such 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, I 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.
These are modern-day libraries. Over time the information
amounts to a formidable body of work which can
Digital days
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 medical professionals, 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 the 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 what 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 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 discussion,
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