Our ability to communicate via the Internet is a very sharp double-edged sword. We can share ideas and organize (virtual) group actions and find support and information, which are all wonderful things. But Internet communication also facilitates a lot of squabbling, because we don't have the other elements of human contact to help us humanize and understand one another and minimize or work out conflicts. And all our internecine battles are out there on the Internet for the general public to see. We look like the People's Front of Judea arguing with the Judean People's Front. We get very worked up about whether activity X or statement Y is sending "the right message", not making us look worse than we already do, and this comes out in flame wars rather than a consensus hashed out on the basis of our highest priorities.
I think we like to aspire to the successes of AIDS activism, but the comparisons are necessarily limited. Yes, there are times I would like to be shouting in the street and throwing things because I am SO ANGRY and don't even have the energy to express that anger. The small incremental changes, the written statements, the testimonies, the Internet fundraising contests, all seem like frustratingly small and slow steps.
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I was talking to a long time PWC friend... and we noted how before the internet, the CFIDS (preferred name back in the day) community seemed smaller and tighter and friendlier.
You connected up by phone. A friend of a friend kinda thing. or support groups. or yes, once upon a time, when the CFIDS Assoc was printing out their first couple years of newsletters, authors of articles would put their contact info and you could connect up that way too.
Phone trees through groups.
and of course, if you were a patient of Cheney, Bell or Peterson, you often connected up through studies. Agreeing to share your contact information to talk to someone else trying the same experimental treatment.
There were real names, and voices.
Now, the internet allows us to hide (guilty here ) behind pseudonyms. And that anonymity has it's good and bad.
( protection to speak w/ o scrutiny of disability cops for ex as a good, and privacy for those who may be well enough to work and don't want those in their workplace to hold it against them. Or talk about family issues and not worry about said family finding out and misunderstanding our need to vent. That sort of thing)
But a very big downside, imho, it seems to give a license to speak ones mind, without repercussions. ETA: maybe responsibility for ones words is a better than repercussions.
Without the visceral connections, we seem to be prone to be more hurtful. It's not "joe" who I have spoken too and know, it is "beaker" who is detached somewhat from being "real"
It seems that is one major reason many pick apart advocates or researchers or doctors and others who are trying to help.
There is more room for misunderstanding with typed word and no voice inflection.-- I've seen many times how that has caused problems with posts and posters.
I don' t know what the solution is. In this corporate data mining world, no one wants to give up what little privacy there may be left.
Maybe we ( and that means me too) need to remind ourselves that it's not a moniker it's a person.
For those who boldly use their real names, I salute you.
who knows, maybe someday I will be brave enough to join your ranks.