By Laura Collins Lyster-Mensh, F.E.A.S.T. Executive Director
Statistics: who needs them? We care about people, not numbers, right?
The truth is that without numbers to quantify eating disorders the people we care about are not seen. We need those numbers to get the public awareness, the research, and the policy changes that will save lives and prevent suffering. Caring about the numbers is caring about the people, and the lack of consensus on baseline numbers has not served the people well. We cannot expect policy-makers to act, or advocates to be effective, without good data.
Those with eating disorders and their families deserve better. But where do we start?
We are often asked for solid statistics on the social and economic cost of eating disorders but we’ve struggled to provide those numbers. We have had scattered data that left out the full spectrum of disorders, ages, and genders affected. It should be easy to count those affected, the cost of treatment, and the cost of not treating these disorders, right? We should be able to look up the death rate, and which disorders are most common. It should be easy to find, but it hasn’t been, so it needed to be done in a comprehensive and authoritative way.
This is why this report that came out yesterday is pivotal in leading us toward using the same numbers, together. Yet I can hear the inevitable concerns, as well.
I worry that some are going to think: “but.”
But these are only US numbers. But not all marginalized people are counted. But we can’t trust the sources of these data because of who isn’t represented. All true. All valid.
I once had an argument with a Black aunt of mine, who had never participated in the US census. She was a learned scholar of racial history in the US and knew the census to have been an instrument not only of voting representation and allocation of resources but also a tool of policies that were oppressive and often racist. She wouldn’t lend her name and location to an effort to count Black people and reduce their safety or resources.
“But,” I said, if you aren’t counted we can’t prove that is happening, either.
To my surprise, she changed her mind and started filling out her census forms every decade. She is counted now. It’s just one data point, but she’s not missing any more. How we all use that data is important, but we need it there to use it.
I’m grateful to those who are doing this work, finally, and sharing it. I am glad to see the discussion and even the “buts.” We need data and science, and we need to use it, and then we need to use it to gather more. Those with eating disorders deserve to be counted and their struggle be visible. Numbers are one of the ways we do that.
It’s a good day for eating disorder advocacy. Thank you STRIPED and AED, and all the endorsers of the report in addition to F.E.A.S.T!