Hello. Did you find my blog today because you hadn't really paid all that much attention to the growing parent movement to change eating disorder treatment but you're alarmed by the anger and emotion you are seeing?
I don't control the thoughts and actions, obviously, of other parents and activists. That'd be fun, but it isn't possible. I can speak only for myself, but I am familiar with the groundswell of anger - and intellect - around these topics.
What seems like an organized mob, and like irrational and extreme anger, is the sound of lots of individuals who have always been there but were ignored and pathologized and patronized for a long time. The Internet offers people not only a voice but an address to send it to - and the whole thing goes on in public. This is new. It is uncomfortable. It is important. It is uncontrollable. It isn't going away.
We're talking about parents who have seen their precious children's lives put in harm's way from damaging practices - and feel a responsibility to protect others from that danger. We're talking about a growing number of clinicians who are standing up to fellow clinicians and to professional criticism. And recently, more and more patients are recovering and asking difficult questions about why their care was not informed by real science and did not usefully include their families. It isn't an organized movement, and it isn't a phase - it's the ugly rough leading edge of paradigm change.
So, now that we have your attention...
We must all fight together against incivility, too. It takes the focus off the ideas and allows those who share your values to be dismissed. I find it hard to see the ideas that I hold dear and fight for expressed unkindly and in ways let critics off the hook. I want the IDEAS to be taken seriously. I want to see parents and other like-minded activists stand up for ideas and good science in a way that can't be dismissed as purely emotional or about each of us as individuals. The IDEAS don't have an owner and deserve to be heard. Ideas can and must be discussed among equals - and people held accountable for the ideas they stand for.
There are genuine and important intellectual discussions that need to happen. I've worked for years to get to have those conversations. I had no power and no audience and so I've had to patiently listen, slowly gain confidence, show up, build a track record, be generous, make alliances, and earn the trust of others - when really, sometimes, I'd rather have thrown an enormous angry fit and I wouldn't have been all wrong to do so. Interestingly, I have been dismissed as angry and emotional and self-interested no matter how gently and cogently I expressed myself. Avoiding disagreement, I'm afraid, isn't an option - it is long overdue. I'm not sure there is a way to disagree without emotion.
And that may be why you didn't know about this before, and are shocked by the pain some of these ideas cause. The critiques aren't new and it wasn't the urgency of change. The spillover of fury and frustration - JUSTIFIED and REAL - is what brought you here today. I wish the concerns and frustrations of parents were heard without that anger. I wish the anger was understood and JOINED because there are reasons for it. The parent autism world has been through this, so has the schizophrenia community. Heck, every social movement has: first they dismiss you, then they laugh at you, then they listen. I'd have to add somewhere in there: then they are scared of your emotion and you and think YOU are the problem.
We must not stop being angry. It is justified, rational, well-grounded, and long-standing. Those who misunderstand it, pathologize it, patronize it, and dismiss it are wrong to do so. They've not seen it growing, they don't understand it intellectually or emotionally. But "they" feel the same way "we" do: caring, indignant at being questioned, hurt at being misunderstood. These are people, individuals who care as much as anyone about these issues. It is frightening to be criticized in public - even in the kindest of terms. It is emotionally difficult to have your life's work disparaged. It doesn't feel like someone is handing you important information, it feels like being attacked for no reason.
It is essential - and courageous - to treat everyone - ESPECIALLY those with whom we disagree - with dignity and respect. Not because they are right, and not as a tactic, but because it is only by treating the other person as an equal that we have a chance of genuine change. They cannot treat us as equals or openly discuss ideas with us if they feel embattled and in a corner.
We must keep speaking up. We must be clear, and we must listen, too.
Even if they don't hear us.