Beyond bureaucracies: Online self help

“When those subject to bureaucratic control seek to escape the influence of existing bureaucratic apparatus, this is normally possible only by creating an organization of their own which is equally subject to the process of bureaucratization.”
-Max Weber

Many people with disabilities spend countless hours dealing with bureaucractic agencies in order to get their needs met. Whether it’s dealing with the denial of an insurance claim or trying to sort through which agency can help assist with building a ramp, sometimes it can feel as if they’re getting nowhere and their efforts are in vain.

There are times when we need the advice or shared experience of someone else who has gone through the same thing. So what can we do?

I’ve found over the years that there are many other resources as a result of the growing disability community that exists on the internet. Not only can you find like-minded people facing the same issues and concerns, but a wealth of information on places like message boards, forums and blogs. These ‘self-help’ areas may not always be as organized as you’d like, but it’s often no worse than mucking through bureaucratic channels.

The question becomes: what’s the best way to use these resources? How can you sort out correct from incorrect information, for example? Surprisingly, that’s easily answered regarding message boards*. Chances are that if a poster makes a suggestion in February, by March someone else might have tried it out and reported back on how things went. Most of these areas have archives which can easily be searched on specific topics and this is a great way to look for information.

As for blogs, there is a comment area which can sometimes contain information more valuable than the original post. So be sure to read through the comments if a post is germane to your information search. Forums may contain email addresses or other contact information you can use to get more information. Sometimes there will be online chat areas or transcripts of particular chats that may offer some help. I once read a transcript of a chat that happened three years before and found the exact information I needed.

I want to insert a disclaimer and add that it’s necessary to exercise common sense when taking the advice found online. The best way to do this is to do some reading and talk to a few people to check out the information you’ve found. But even if the information only serves to guide you in the right direction or toward another site that can help, it’s still a valuable use of your time.

And, in the end, if you get waylaid a few times by getting information that doesn’t pan out, think of it this way : you just can’t escape bureaucracies anywhere.

*This link is for the CareCure forum for spinal cord injuries. For disability specific message boards, blogs and forums, I recommend doing a keyword search on Google for your disability.

Copyright 2007 Ruth Harrigan

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