July 16, 2015

F.E.A.S.T. Executive Director describes advocacy goals and approaches

Fantastic, must read blog post from Leah Dean at F.E.A.S.T. today. She says what many of us think and believe, expressed beautifully!

Same Brain: Different Operating System

On a personal note, I've been disturbed, myself, to see conflict inside the ED world of a kind I never thought I'd see. People with many of the same beliefs I have about evidence and science and parent involvement are forming their own groups and factions and running into many of the same obstacles and road blocks I know well. These informal groups are not always operating with the accountability and civility that I feel is so important. They are not always taking the time to understand the history or to know who has done or is doing what. Some individuals are making demands without having earned trust, confusing informal lists of people with accountable organizations, personalizing their critiques and making the issues into conflicts between people and not ideas, calling out organizations and individuals in the field instead of recognizing them as allies.

Also worrying is the resurgence of parent-led advocacy that repeats history by promoting ideas about parents and eating disorders that are not evidence-based and not parent empowering. Factions and fights and splitting are abundant. And people are confused.

I'm seeing people be exiled and shunned and pathologized. This is not the way I operate or recommend that others do either.

I know the temptation of throwing bombs. I've thrown some myself. They always land in my lap because I didn't recognize that change in the ED family comes through persuasion and trust, not being "right." I had a lot of "shoulds" in my head: people SHOULD understand, SHOULD behave differently, SHOULD have courage, SHOULD operate logically, and SHOULD trust me. Didn't work.

We are a family whether we like it or not. If you make an enemy in this world its a small room, and there's no room in here to stalk off and sulk. If we as an individual don't gain the trust of others we don't get very far and we often hurt our allies and the ideas we hold dear. You may be right, and you may not be the person you're accused of being but if the perception is there you aren't going to be effective until it is repaired. If you are associated with someone who has, rightly or wrongly, gotten a bad reputation or scared people, you carry that burden and have to fix that first. It "shouldn't" be that way, of course. People should do the "right" thing and they should believe the science as we know it. But, we're not there. And we're not going to get there as individuals or even as single groups.

The way forward, I find, is in accountable advocacy. F.E.A.S.T. started with just a handful of people, as Leah Dean describes so well, who built the scaffolding and accountability for the principles and beliefs we hold dear. It built a structure for present and future parent advocates and those who care about parents and science to do effective advocacy, to have a collective voice. An accountable voice. As individual members of F.E.A.S.T. each of us has a single voice but by supporting the organization's work we speak as a group.

You can be part of that voice, or you can distract from that voice.

Accountable advocacy is a team sport. It isn't as immediately satisfying as an angry tweet, or intimidating someone who disagrees with you. It isn't as visible, often: building relationships and real conversations are not showy. And it doesn't always feed your ego and make you well "liked" on Facebook.

Much of the very personalized infighting I see going on at the moment is about individuals, not ideas. I support F.E.A.S.T. because it keeps all our egos in check and is about more than any one of us or any informal group of us. But it also depends on the families it supports to support it through joining, volunteering, donating, and sharing it with others.

I don't want to hurt those in the field with whom I disagree. I want to persuade them, and learn alongside them, and succeed together in our common goal: better ED treatment. That doesn't mean not having or stating or pressing my points. It means doing so in a way that acknowledges our common goals and humanity. It means listening as much as talking. It means establishing trust, which can't be forced or demanded. Too small a room, and too fractured and embattled from the outside. We're a family and have to pull together and resolve our disagreements if we want to have a clear voice to the public and to policy makers and the media. We have disagreement and that's okay. Resolving them is what we need to do, not "win" or prove others wrong.

We're getting closer. Let's "keep going."

9 comments:

  1. Laura, We don't have common goals, and we are not a family. Some of us despise eating disorder professionals. We think they are generally incompetent quacks, and we are convinced a majority suffer from various psychopathologies that make them dangerous. Most of them are motivated by money and selfish professional advancement. They routinely lie to parents and the public about the success rates of their treatment methods.
    I work regularly these days with parents who have rejected the eating disorder professionals. These parents are successfully treating their kid's anorexia just fine, and are avoiding the negative side-effects of professional treatments, including families torn apart and financial bankruptcy. You can continue trying to change these people, but I doubt you will have success. Chris

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  2. Your pyrrhic, elitist, egoistic approach to the topic is certainly unique. Your treatment of others is uniquely tone deaf and weird.

    But, to each their own. Parents have a right and responsibility to make their own choices.

    I sleep well at night knowing that I'm not an ass. There's something.

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  3. "If only everyone would fall in line with my own agenda and beliefs about what they SHOULD be doing, everything would be just FINE."

    Pretty sure that's the type of rationale that is plastered all over historical texts about families of eating disordered people.

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  4. Curious-
    Where does your pathological fear of conflict stem from?
    Why have you evolved to believe that it is better to demand compliance from everyone- that everyone needs to agree OR ELSE face the wrath- as opposed to being ok with disagreement and discussion?

    There is research coming from the field of child psychology and attachment that shows a STRONG correlation between eating disorders and unresolved trauma in the mother.

    It doesn't take a rocket scientist to see "unresolved trauma" plastered all over your face.

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    1. Fear of conflict? Well, that's a new one. I wish! I have a fairly clear, and transparent WAY of engaging but avoiding conflict is NOT my goal or my rep. A lot of people wish it would be!

      And "unresolved trauma" is a new one, too. I wish everyone knew that this kind of free online diagnosis was available. Think of the money we could save!

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    2. If you do not fear conflict, then why do you demand consensus? Why not accept that different people have differing viewpoints? Why not accept that perhaps your own viewpoint may be the one that is inaccurate?

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    3. I certainly accept that my viewpoint may be wrong. I learn more every day and expect to continue to do so.

      I do not "demand" consensus. I hope for it as a way to move forward in the field together. Differing viewpoints are normal and expected, but while we lack any common ground on how to define, intervene, or measure recovery we all march alone and can't aid one another. Also, we lack credibility as a field in terms of getting research funding, public support, training, and public health initiatives.

      Lack of consensus means we're not quite there yet, still learning as a field and as a society. Not all opinions are equally valid or true and the wrong ones hurt patients and their families.

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    4. Can you not see the hypocrisy in what you write and how you behave? You state your opinions, which is fine, but you do so in very aggressive way and you seem to be totally unwilling to listen to anyone that doesn't have the same beliefs as you.

      There are many ED services are poor and can be potentially damaging to clients BUT there are also ED services that are very good and save lives. There are some questionable professionals within good services and there are some good professionals within questionable services. It isn't black and white and it definitely isn't simple.

      To dismiss all professionals and suggest parents should go it alone is, in my opinion, not only very stupid but also potentially very dangerous! We all know how complex EDs are, the mix of psychological and physiological symptoms, medical risks, refeeding and the possible comorbids that may run alongside the ED. Does having professionals involved mean that everything will be positive, no it doesn't - but to suggest that they have psychopathalogies that make them dangerous..? Is that not similar to the blame type pattern of thinking that used to be aimed at parents by professionals, because that was the commonly accepted theme? There's a difference between SOME and ALL - why be so aggressive about something?

      I am not for a second trying to make out that the ED care available is acceptable, and in many areas it is, quite frankly, appalling. However..! That doesn't mean I take a dislike to everyone within the ED field? I dislike some retail workers, but I don't dislike all retail workers. I dislike some people who have black hair, but I don't dislike everyone with black hair. There are unhelpful, dangerous, vile, uneducated people within all walks of life but that doesn't mean you put every single person from that profession or image into one group and hate on them. The ED service in my area is beyond outdated and I do not agree with the way it is run, but that's not because of the people working within the team, its because of people on high in charge of funding. You can have amazing people working within a team, but if the powers that be won't allow them to work in the way they'd like to..? That's not their fault!

      Some children will probably be fine with refeeding done at home away from any medical professionals, and if that's what works for them then that's great. Some children, regardless of how loving their parents are, would die without medical professionals being involved. I would never ever tell a parent not to bother with professional support, I'd warn them to be aware of the angle their team works from and whether that's right for them, but never ever would I tell a parent to just feed their kid at home because it's impossible to know the ins and outs of every single case. I wouldn't be willing to make that statement, I wouldn't be willing to take that risk. There's a difference between being knowledgeable and helping people to find the right treatment plan for their family, and behaving in the way that you are. I don't know you, this comment isn't an attack on you; but I don't understand why you are unable to see that what you write, how you behave and how you speak to people just don't make sense..?

      I also think that people can have a discussion or a debate without it being a conflict; there are ways to go about things and the first part of that is being willing to hear the other person - from both sides.

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  5. After all, things like Alcoholism and Depression are also genetic.

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