In the eating disorders advocacy world there are different styles: personal, and strategic.
I am often asked to support a personal advocacy initiative: either about a particular advocate or in support of a particular patient. I receive many appeals that are about raising money or awareness and again, some are personal and some are issues-based.
In recent years I’ve realized this is a conscious and a temperamental choice for me to be issues based and not personality-driven. I don’t want to make my advocacy work about me, and I am less comfortable with advocacy that is about a particular treatment, clinic, clinician, or patient. What fires me up are issues, strategies, and systemic change.
Personalized advocacy is often emotion-driven, about being good or bad people, and involves loyalties and groups and strong personalities. Issues and strategy are less heroic, less dramatic, slower, and take larger groups of people working together. I feel I am more effective at the latter. I have also learned in the trenches a lot about the risks of personalized advocacy:
It becomes about whether our intentions are good, not our ideas
I find most advocates, even the ones who I disagree with strongly, to be well-intentioned. They’re not greedy, unfeeling, plotting enemies: in fact that’s part of the problem. That would be so much easier. If we have to frame someone as wicked in order to ourselves be in the right, then you are fighting them, not the ideas. Good intentions don’t make you right, and a lot of bad comes out of equally good intentions as our own.
It forgets the hard-working, less flashy, majority
Very little real and lasting change happens in public in dramatic fashion, That’s a Hollywood vision. The hard work of changing minds, passing legislation, getting onto decision-making committees, and doing research is all pretty plodding and thankless. It gets done by people you don’t know, and we need people who want to do the slow, showing-up, steady unglamorous work of changing policy and minds. Of engaging not just once, but ongoing.
Those in need of help are also largely invisible
We love a good story, right? A sympathetic victim, a tragic event, a clear bad guy. But the real problems we all share are ones that keep most people from ever seeking care, fail to treat them adequately, a lack of community and family support, stigma, and an often unhelpful environment around eating and activity and mental health. If we focus on the most sympathetic stories don’t we by design fail most families?
It is complicated
Important things are not simple. Eating disorders are not simple. Mental health is messy and complicated and not well-understood. Being too certain of anything is a recipe for a dug-in position that even you won’t hold in a year, and you’re going to spend a lot of your energy guarding that particular hill. It’s okay to be still learning. It’s okay to walk around and see other angles.
Anger is great fun, but does it focus on the right things?
Anger is too easy an emotion to evoke. I find it fades easily as well, or burns out the carrier. The stamina to keep fighting for progress needs passion, but can’t depend entirely on anger.
It lets everyone else off the hook
Whenever I see a campaign that is focused on a person — whether the creator or the recipient — I have also seen that the net result will draw away from the overall cause. Not that individuals don’t matter, or that there are not really bad agents out there, but when the focus is on a particular clinic or particular patient I worry it lets everyone else off the hook. The one really bad clinic is a problem for those who encounter it, but does winning a battle with them change the day to day average care that isn’t working? Does it raise the bar overall?
Personalized advocacy also lets other advocates off the hook. It leads to competition, turfs, and discouraging those who are just starting out from feeling they have something to contribute. Too many advocates come out strong but burn out. Too many advocates feel unseen, excluded, and unwanted. Or worse, newer people assume the job is being taken care of when the truth is, we’ve hardly started with making real change, and our limitations all have to do with too small numbers working together. We can get somewhere with bigger numbers that no one person or small groups could.
It sets the bar for fury too low
I get as angry and disgusted as the next person when I see bad treatment, bad policy, myths, and tired ideas. But when I step out to decry the worst I risk normalizing the everyday, and right now the everyday around the world is really awful. Most families facing eating disorders are not getting any help, or getting too weak an intervention, or are carrying it all themselves rather than with the level of community and institutional and personal support any family deserves in a crisis. That makes me furious. That should make us all absolutely livid ALL THE TIME. I refuse to set my level of fury at the far end of unacceptable. It doesn’t have to be the worst ever to be bad enough.
I realize my lack of response to individual situations is not as satisfying. It isn’t as satisfying as making myself the hero of a campaign either. But I’ve been in this for over a decade and will probably be at it for another decade at this rate. I want to have an impact on thousands of families who will never know my name or anything I’m associated with. I am thinking of the families who will never have to be confused and frightened like we were because they got early diagnosis and fully-provisioned care. I want parents to be given information and support early so they don’t have to waste precious time and face bad outcomes. I want everyone in the social safety net of teachers and coaches and doctors and pastors and social media and friends and family to not only be ready but to be able to make an ED predisposition into a knowable and resolvable issue.
I find my satisfaction in larger systemic changes. In changing the mind of a decision-maker over years of uncomfortable engagement. In earning a place on a committee, getting to review a project before it is announced, on being the person in the room with an irritating dissent. In publishing materials that help people get the better information first. In empowering advocates of all temperaments to get involved, get connected, show up.
We need all kinds of advocates of course. My temperament is only one of the necessary diversity of advocacy attitudes. I know many others like me, and we need more. If this sounds more like you, or you are more of the face of change type, we need ALL kinds of advocates to get things done here at F.E.A.S.T. and beyond. Call me: we’ve got work to do.