Keys to Becoming a Better Advocate
Leah Dean, Executive Director, F.E.A.S.T
I recently attended the semi-annual NIMH Alliance for Research Progress Meeting in Washington DC. While I do plan to write up a more comprehensive report on the overall event, I felt a strong inclination to focus this post on one particular theme of the meeting – that of working effectively as an advocate.
One of many interesting talks at the Alliance Meeting was by Margaret Anderson, Executive Director of “FasterCures” whose mission is to find and promote ways that speed up the process of gathering scientific knowledge to apply to treatment models.
TIME=LIVES is their call to action.
Faster Cures did a study of the AIDS Advocacy movement, which has been one of the most successful advocacy campaigns to date, and which resulted in a large and effective investment in AIDS research and treatment strategies.
How did they do it?
Key Elements of the AIDS Advocacy Movement:
5. Accountability to Goals
How can we learn from their model when working with eating disorders?
Get attention for your cause. Storm the gates, make it happen. No one is more invested in seeing effective progress than the families of eating disorder patients. It is up to us to make it happen, to demand better treatments and a higher priority to eating disorder research.
As advocates, we need to do our research. We need to know the SCIENCE. We need to know the science well enough to see the larger picture and explain it to people in a position to be able to help our cause. This includes understanding the LIMITATIONS of the science and the scientific METHOD, as well as knowing the POLICY and CONSTRAINTS that the scientific community is dealing with.
Knowing the science, method, limitations, policy and constraints will enable us to propose novel solutions to those in the field with a more focused point of view about their own particular research and theories. Even our cockamamie theories, if based on some combination of knowledge and experience, can become seeds for others to nurture in approaching their own work.
No one person can do this alone. We must come together as a community and pool our ideas and resources. We can’t do it without PATIENTS. Bringing the patients into the community to call for cures and to participate in clinical trials that may not help them, but could help others in the future is critical. We can’t do it without FAMILIES who care for the patients, pay for treatment, put their lives on hold, and as a result can have incredible INSIGHT and EXPERIENCE that others in the community need to be aware of. We can’t do it without RESEARCHERS and CLINICIANS. They are not our enemies, they are people like us dedicating their work to helping our loved ones with whatever tools they have been given and insights they have gleaned from their own lives and work.
Accountability to Goals
We need to define common goals and work towards them. This may entail pulling back and taking stock and re-calculating the path. These are uncharted waters and we are all sailing in different directions trying to find a common port in the storm.
We can’t stay on track without leaders who do it all – who see the big picture, get positive attention, build communities, do their research, propose solutions, and hold people accountable.
I would like to add one more key ingredient to this recipe: COLLABORATION.
Eating disorders do not exist in a vacuum. We know they are developmental brain diseases and that co-morbidities are common. There is a larger mental health advocacy community out there, many of whom are working just as hard and tirelessly as we are within the confines of their own particular causes. One thing to remember is that these people get it. They have seen mental illness of other flavors and understand the concepts that these are not lifestyle choices, that bad parenting doesn’t cause mental illness, that effective treatment is out there and that recovery is possible. They may not get it yet for eating disorders, but they are primed to understand when given good information and they also see the desperate need for better treatments and access to effective services.
With these things in common, it is only natural to join forces to create common standards and goals for promoting mental health research and improving treatment. Once again, we can’t do it alone. We need comprehensive standards of care, we need to make sure families are included as caregivers to provide 24/7 structure and support outside of care appointments. We need individual case managers who look at the big picture for each individual patient and take into account co-morbidities, medical concerns, and personal resources in order to triage treatment components. We need providers to take responsibility for overseeing transitions between levels of care where patients often fall through the cracks. I could go on, but I think you all get the picture.
I urge everyone reading this to pause and take stock. Think about your passions, your goals, your needs and your skills. Think how you personally can apply them to your own advocacy work and within a larger community. Think about what helps and what harms, what promotes change and what creates division, what is a clear voice and what is background noise.
I am incredibly proud to be a part of the F.E.A.S.T community. Each day we welcome new members – caregivers, patients, recovered patients, clinicians and researchers. We have a set of guiding principles and we have leadership all over the world that is working to see the big picture and further our goals. We are well on our way to being better and better advocates. Join us?