November 23, 2011

Now hear this


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?

Welcome.

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.

5 comments:

  1. i feel sorry for your daughter. eating disorders are not equal to autism. you are a toxic parent.

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  2. Jean, you are clearly not familiar with much current scientific research which indicates that, contrary to popular (and widespread) belief, parents and families do NOT cause eating disorders. Anorexia is a brain disorder in those it affects, just as autism is a brain disorder. Perhaps you are too young to remember the times when "refrigerator mothers" were blamed for autism, another popular (and widespread) fallacy.

    If you go back and read many of Laura's posts as well as Carrie's helpful posts at http://ed-bites.blogspot.com/, you will find evidence backing up this point of view.

    BTW, Laura is a loving, caring, BRAVE and KICKASS parent whose daughter is fortunate to have her as a mother -- and many of our children are fortunate that we have Laura as a model for our struggles to help our children.

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  3. Good grief, Jean just proved your point very well! You seem perfectly logical, calm and sensible to me, and having met both your daughter and yourself I can't really see anything to feel sorry for her about (other than our shared former diagnoses of anorexia, which sucks). So I can only conclude that Jean is reading something into this post which isn't actually there.

    On a different point, it's thanks to you that I realised I need to and have tried to change the way I communicate with people on emotional and complicated issues. I still get upset and angry but I try to stay polite, rational and open minded as best I can. I must admit that this is sometimes a tactic (because getting really confrontational obviously just makes other people more defensive) but I am continually inspired by the way you talk with people. (By the way, this might sound ridiculous but I hope all this Laura is awesome stuff isn't annoying, I have a tendency to get a bit effusive and enthusiastic when blogging and commenting on things and people I feel passionately about but I never say anything I don't mean!)

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  4. Jean, don't feel sorry for Laura's daughter! She's recovered!!!!!

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  5. Jean I feel sorry for you. You have a hard time learning new ideas and listening to other people without getting defensive. I hope one day you will realize how hurtful and immature your comment was. I hope that you will one day, as you read and learn more about eating disorders, offer a sincere apology. By the way, Laura and her daughter are awesome people. Not so sure about you.

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