‘Nothing about us without us’ is a simple principal to which I maintain that all researchers need to conform. Without real knowledge and understanding of the experiences of any vulnerable group, the ‘experts’ will continue to ask the wrong questions, arrive at the wrong answers, and seek to impose abusive ‘solutions’ to their self-defined ‘problems’.
I will no longer pay any attention to any ‘expert’ who excludes the vulnerable group they are researching. Without the active engagement and involvement of the vulnerable group, their conclusions are worthless There are plenty of examples. When Sir Bird ‘s panel of ‘experts’ came up with the diet of phonics (or even more phonics) for dyslexic readers, it didn’t seem to occur to the panel of invited experts to include dyslexic researchers. The intervention championed was based on the idiotic ‘simple view of reading’, which is quite simply ‘wrong’.
More recently, one might have thought that when our ‘experts’ tried to renew the definition of dyslexia, they may have learned from their previous mistakes. But sadly not. The new definition is a slight improvement over the earlier one, but still identifies dyslexia by the difficulties we experience rather than the differences in how we process information. In other words, rather than seeing the difficulties experienced as social consequences of neurodivergence, we are still seen as deficit learners despite all the evidence to the contrary (neurodivergent people are excellent learners, even if what we learn is not what teachers intended us to learn). So excluding us while ‘experts’ pontificate is unacceptable to me, and I imagine most neurodivergent people.
Rather than yet again argue our case, I have decided to simply ignore all academic papers that are written about us rather than by us., with the comment, “Another irrelevant paper”. Can I suggest all neurodivergent people do the same? We simply don’t need to waste time with tired old ideas, when we have the possibility of playing with our own (and much better) ideas. From now on, unless research conforms to this principle, it will go directly into the metaphorical bin where it belongs. I hope you will join me in enjoying doing so.
