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A bunch of interesting links and ideas seem to be coming out of the Feministe post Thoughts on disability and respectful language.
Reading the comments I finally had an answer to my niggling concern with the social model of disability glossing over the fact that some disabilities really do, objectively, suck, for reasons that have nothing to do with society:
But we need to break out of the model, which undoubtedly has a stronghold on the rest o society, as necessarily always in the negative realm. There is nothing INHERENTLY negative about disability. That doesn’t mean there can’t BE negatives — just that it isn’t necessarily, and always, negative.
Reading the comments I finally had an answer to my niggling concern with the social model of disability glossing over the fact that some disabilities really do, objectively, suck, for reasons that have nothing to do with society:
But we need to break out of the model, which undoubtedly has a stronghold on the rest o society, as necessarily always in the negative realm. There is nothing INHERENTLY negative about disability. That doesn’t mean there can’t BE negatives — just that it isn’t necessarily, and always, negative.
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And she says a couple of places that rejecting the "medical model" is not the same as rejecting medicine. It obviously has a huge role to play in helping disabled people cure or at least cope with our symptoms and underlying conditions.
The point is that while SOME of the suckiness of CFS comes from the physiological symptoms (and it's important to do as much as possible to alleviate that suckiness), some of it also depends on social things. For example, suppose you're bedbound and have no family willing to take care of you. Then in the wrong social context? You die. In the right one you get a pension, a carer, meals on wheels etc. Those are two VERY different levels of suckiness resulting from the same physiological symptoms.
Thus when we judge "How sucky is it to have condition X, and how can we best alleviate that suckiness?"(*) we have to look at both the medical AND the social factors. (And yes, the negative social effect of any disability support need to be weighted up against the benefits, the same way as the side effects of any treatment. The point is that they're part of the analysis) It may be that for you, medical help is the most important factor. But that's not true for everyone.
(*)Which in a lot of cases is not necessarily the right way to frame the question anyway, but I'm sleepy so it will have to do