Campaigning for people with eating disorders can be empowering, energising, and creative. Most importantly of all, it can generate encounters with others who have the most striking determination, vision, and compassion.
If it were easy for us to change the status quo and create what we want to see for people with eating disorders, then we would no longer need to campaign. So, as well as being empowering and positive in many ways, campaigning is also difficult. It involves confronting resistance.
Sometimes this resistance takes the form of outright criticism and attack. In some ways, this is easier to deal with: a lion in lion's clothing. At other times, people in power may offer warm words on the one hand, yet persist with cruel actions on the other.
Campaigning is being invited to share your views as a token gesture of listening but not really being given a voice.
It is being asked to be involved in projects to sprinkle a little 'lived experience seasoning' on them, rather than being given decision-making power.
It is people nodding along encouragingly while concealing an underlying disinterest (or even contempt) for what you have to say that they’ll share elsewhere.
It is powerful figures saying, “we are all on the same page”, when the sharing of views has not been reciprocal.
It is being met with invalidation, a wilful refusal to acknowledge reality as it is rather than how it’s hoped for or imagined to be.
These are all ways of defending from threat, from fear of being complicit in the unbearable - being powerless, unknowing, and part of a system that harms.
Nobody signs up to work in eating disorders to cause harm. But harms are not made unreal by ignoring or denying them, or explaining them away as the fault of patients or some ethereal factors 'over there' that are out of our responsibility.
Campaigning isn’t all like this, but the desire to protect the status quo results in a closing down and defending from people like me - those whose ideas challenge existing categories and practices.
It is so difficult not to give up knocking on closed doors. It is exhausting having to watch out for being burnt when you come under fire for simply sharing your experience and being who you are. It can rub you raw to brushing up against abrasive responses to your outstretched hand of collaboration.
It is so difficult to have grace.
Yet there are times when we simply have to turn the other cheek and hold our heads high: to hold ourselves and each other in our shared efforts for change. Times when we need to pull back, to work out when it’s worth the strength required to persist in changing old ideas, and when to put that energy into creating something new that leads us in a more life-giving direction.
We simply can’t do this alone, either. I am infinitely grateful for those who model, support, and share in this grace with me, and the dignity we afford one another. We cannot afford not to.
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