If you go back to my vlog and watch it again, not with an eye to what I’m saying, but with an eye to me as a person you might think that I look fine. That my friends is the catch 22 of long term illness. I may look fine unless you know what to look for, and I choose to be happy however bad I’m feeling, but I am disabled by this long term illness. I am currently wrapped in blankets laid propped up on the sofa with my eyes shaded. I am dictating this to the computer using speech-to-text. I am not well enough to go anywhere, I haven’t even been able to eat yet today. I’m even more disabled by the attitude of government and on top of that the media label me both a scrounger and a liar. This will be the only time I discuss my disability here. I don’t dwell on it, I’m not fixated on it, just like wearing glasses it’s part of my life and I deal with it.
It has given me a few things back though. I am a proud keyboard warrior now. I’ve cut my teeth on disability rights and the fight for benefits that are inadequate as reported by the Council of Europe this week. I’ve watched the political system grind on, I’ve seen how things were under successive governments, and I have come to the conclusion that with a few notable exceptions who either stand outside or step outside the ‘party politics’, none of these career politicians represent me. None of them understand me. None of them will fight for me and in general, none of them care.
Where does vaping come into this? Smokers, and with them the vapers who have escaped from smoking, have been systematically demonised in the press by what I call the transmission of the Social Norm. In exactly the same way as the disabled and benefits claimants have been demonised. Dear old Social Norm represents the little ways they control us by telling us what we should be thinking without us knowing they’re doing it. I don’t have a tin foil hat on, what I mean is this. Everything you watch on TV, everything you read in the controlled media, everything that’s spoon fed to people who don’t know how to judge the information that they are being given, all of that turns Wayne and Waynetta Normal into the sort of sheeple the government wants them to be. Perhaps not model citizens, and maybe not contributing to society in the way that will change lives and rock worlds. But happy with what they have, keeping up with next door’s new stuff so the economy ticks over, and not rocking the social or political boat. This is why the government (I don’t care what colour ties it’s wearing) doesn’t like uncontrolled media. It might give people funny ideas, and in fact it does. Uncontrolled media + no ability to read reflexively = the arse end of the internet.
Out of that though comes good ideas. They bubble to the top like cream on milk, pushed up by voice after voice saying “that’s a good idea” and “oh yes, that might work”. Crowd based wisdom, run through millions of brains who do know how to judge the validity of information. Unfortunately though the majority of the people at the top are refusing to look at ideas which come from the people who are actually dealing with the problem because they listen to experts. People with a lot of learning, and generally very little common sense practical experience of applying theories to practice. Like the food and nutrition PHD graduate my mum asked to boil an egg who didn’t know how.
From the crowds I stand in labeled “disabled” “Invisible illness” and “wheelchair user” comes the shout that experts who don’t have our conditions don’t understand them. UNUM and other insurance companies with a financial interest should have no say in any decisions concerning our conditions. “NOTHING FOR US WITHOUT US” is the cry. From the crowd that I stand in labeled “vaper” comes the shout that people who have never smoked have no idea what if feels like to smoke, or to quit and fail, or what it’s like to switch to vaping. We vapers know our kit, have done our research and understand the issues. That big tobacco and pharmaceutical with a financial interest in keeping us yo-yo quitting should have no say in decisions concerning the products we use. “NOTHING ABOUT US WITHOUT US”. As the Vaping Giraffe pointed out in his excellent blog yesterday; it is in the interest of vapers to make vaping as safe as possible. But the shouts fall on deaf ears, because those in charge are listening to the experts who have a theory and a plan and the odd hidden motive. For crowd based wisdom to have a chance of shining we really do need to think about changing the system. Self Congratulation as a Basis for Social Policy? Thomas Sowell is right, this is exactly what’s happening.
How do we go about changing it?
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Medical professionals please see M.O.V.E and add your voice.