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The "Expert" crown defaults to them. They speak from the dais. We get to listen a lot and ask. They are by default "The Experts" in the fight against ALS.
But wait, there are all kinds of people with superb and valuable knowledge related to ALS --
- There are people who know a lot about insurance.
- There are people who know a lot about communication technology.
- There are people who know a lot about low-tech hacks.
- There are people who know a lot about suction machines.
- There are people who know a lot about breathing.
- There are people who know a lot about the FDA.
- There are people who know a lot about moving a person on and off a commode.
- There are people who know a lot about taxes.
- There are people who know a lot about drugs.
- There are people who know a lot about data.
- There are people who know a lot about choking.
- There are people who know a lot about financing research.
- There are people who know a lot about stem cells.
- There are people who know a lot about feeding tubes and nutrition.
- There are people who know a lot about what's important in living with the beast ALS.
- There are people who know a lot about primary care in ALS.
- There are people who know a lot about constipation.
Our default implication for the word experts being neuroscientists is revealing. There are many people in the fight against ALS, including those living with it, who know a lot. We still live in a hierarchy where people with ALS and caregivers are at the bottom.
Words matter. "Expert" is not a royal title to be owned by anyone by default.
It's time for simple changes to some traditions. "Ask the Neuroscientists," anyone?
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