I do worry that we should not allow our anger and frustration to get the better of us. That includes me.
I was going to reply to this comment yesterday, but I hadn't made an account here yet and it took some time for the mods to approve it. Which is just as well, because the fire has gone out and the resignation set in, so perhaps I can express what I felt in a more deliberate way.
This community has a strong culture, that seems to stretch across generations of patients and advocates, of being, in my opinion, overly non-confrontational and patient and bureaucratic in approach. There's this pervasive pressure for patients and advocates not to be seen as emotional or angry or engaging in any way that's not calm and collected and cautious and utterly circumspect. And I understand some of the reasons why that is, the gaslighting, the claims of death threats, the way we're perceived, etc.
I felt this necessity in the first couple years that I was sick, but as illness set in and the shine wore off the apple of my respect for government and institutions and faith that they would get it right, if only things were explained properly, I came to realize how thoroughly we live in the box they've made for us.
And reading this concern about saying the wrong thing, all I can wonder is whether this community will ever call a spade a spade. What the BPS crowd has done to this disease is so profoundly wrong, so unethical and so immoral and so sustained that they cannot and should not expect decency. And patients or advocates don't owe it, no matter how friendly the delivery. People that espouse these viewpoints should be drummed out of town, tarred and feathered, set up in stocks and pelted with tomatoes, and that's frankly the least of what they deserve. We should have t-shirts that say "Fuck Simon" and mugs that say "National Disgrace" below Trudeau Chalder's face.
It may not be for every advocate in every role to scream and rage, but can't some patients speak with more than utter care and circumspection? And hasn't David earned the right to speak brazenly if he so chooses (leaving aside the question of whether what he wrote even qualifies as that)?
Whether it's tomorrow or in five years or twenty, I will die amazed that the BPS crowd and an unthinking, unreasoning medical community has been so successful in cowing a whole community of desperately ill patients into being so pussy-footed. Patients are dying, and have been dying for decades, and we're still worried about what "they" will think of us, as if it's an intellectual argument waiting to be won, rather than dogmatism and small-mindedness and greed that needs to be subverted and overcome.
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