I'm very sorry I haven't managed to post on this thread until now; that certainly doesn't reflect any lack of interest in Gillian's case from my part. I'm proud and delighted to see that forum members have picked up this issue and already made a positive difference to the situation
Cort has indeed been driven out of his house recently due to resurfacing of a nearby road/driveway, so he, like many of us with chemical sensitivities, does understand something of this situation and I hope Phoenix Rising will find more ways to help with Gillian's campaign in the coming months. Do keep suggesting ways we can help, Countrygirl. I'd also like to speak to Gillian over the phone, we can do an interview perhaps; there are lots of things we could do to help, I think.
Another thing that all of us living in the UK with chemical sensitivities (and indeed with ME/CFS and other 'controversial' illnesses) understand very well, is that the routes that are supposed to protect us in our society do not function for us at all, and systemically make it impossible for us to obtain our rights no matter what avenue we may try or what support we may enlist. Small victories are few and far between. We know very well the difference between the theory and the practice here.
For that reason, I find it almost impossible to imagine that duckandddive could possibly have written the following if s/he had direct personal experience of living with a severe illness which is not recognised and supported officially:
I don't believe that anyone has to live like that in the UK unless it is their choice to.
This is precisely the response we have all heard from people who disbelieve our reality: "This can't possibly be true, because I prima facie believe that the UK looks after its citizens and has a safety net. I refuse to believe that the UK treats people like this." Actually,
nobody wants to believe this, ourselves included - in fact it's a very frightening experience to come face to face with, because we don't realise how psychologically important that safety net is until we find it missing. The exposure of that myth is psychologically devastating. Two quotes that have stuck in my mind, from a member of this forum and one from Bad Science: "A society without a safety net for the worst off has no real safety net at all."....and "A safety net is still a net" (ie it is full of holes).
Everything you say, duckanddive, makes sense only to somebody who hasn't learned from bitter personal experience that to their horror, it isn't true. Pretty much all of us on this site take these things for granted: we know they sound incredible, and appalling, and unworthy of a developed nation; we know it is hard to believe that people can be treated in this way and that there is nothing that can be done about it through the usual official channels - but we also know that is indeed the situation, and we know it through painful personal experience.
So your input seems to me like the conventionally sensible and well-meaning input of somebody who simply trusts the system and is lucky enough to have no first-hand experience at all of the issues they are writing about. Somebody who is writing from a theoretical point of view, about how the system is supposed to work, rather than writing from the practical point of view of somebody who has been forced to discover that it
doesn't work.
Duckanddive: You have been asked several times on this thread whether you yourself have ME, CFS, MCS, or what? It's not an unreasonable question: most of us here start out by introducing ourselves, telling something of our own story, and we write from our own experience. It's only fair to ask that you now answer that question before continuing to question that which everybody else on this thread knows to be true.
I think there may conceivably be some value for us in the points you have made: firstly that it can be useful for us to be challenged to make the case strongly and clearly; and secondly my reading of the situation does actually tend to agree with you that the short-term solution of keeping Gillian in her current situation is clearly not ideal, and the appropriate legal routes are the obvious way to go and are what ultimately needs to be done. I even agree that the publicity on the web sites linked to does not make the case in the best possible way, and really we could look right the way across our written materials and see much room for improvement - that's not in the least a criticism of our hard-working advocates, but it's true that our side of the argument is not presented with the same resources and professionalism available to the denialist forces ranged against us.
But really, Duckanddive, your position overall has not been at all helpful so far. You seem to have said that we ought to go down the correct legal route, and that because that has been tried and has failed, the people helping Gillian must have not done a good enough job. Since the problem here is lack of resource - and a problem of the strong abusing the weak - it really isn't helpful to criticise those whose efforts to defend Gillian have not achieved the desirable outcome unless you have specific positive recommendations and a contribution to make.
Everybody else on this thread is looking for a way to help Gillian, however they can, with the very limited resources we all have at our disposal. It would be nice to think that you are similarly motivated, but I think we all need to know something about what your personal interest is in this subject before we can feel confident about that. So please: introduce yourself...
