Where peak bodies fail:
- They talk over individual experiences
- They ignore outliers
- There’s never anything controversial in their thoughts
An example of ignoring outliers can be read in this post – it’s about how ME/CFS research tends to exclude the most severely impacted.
Their lack of controversy harms the people in their organisations. When you have to self-sanitise because you receive government funding, but it’s the government who needs to change, there’s a conflict of interest that peak bodies don’t like to talk about.
A few years ago before she passed, I was talking to Sammy about this and she said it brilliantly (no surprise there); that peak bodies are very hierarchical and hierarchical systems amplify how disempowered the most marginalised are.
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