Ask The (Please Be Specific)

Over the years I've experienced many "Ask the Experts" sessions related to ALS.  It's always a panel of neuroscientists who talk a lot about ALS research and then take a few questions.

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?