Garnering Inspiration from the Courage of Advocates: Reflections on the National Institute of Mental Health Alliance for Research Progress Winter Meeting


Published: February 9, 2014

I walked into the room and was ushered to the front of the large rectangular table outfitted with table microphones shared among three or four attendees. The talks were already underway which gave me a chance to study the room quietly. Up front, table cards identified the speakers by name: Cynthia Bulik, Thomas Insel, Philip Wang, Lisa Dixon, Jordan Smoller, Phillip Satow. Around the sides of the rectangle, however, there were no names. Rather the table cards read: National Alliance on Mental Illness, National Alliance for Hispanic Health, Eating Disorders Coalition, National Eating Disorders Association, F.E.A.S.T., TARA National Association for Personality Disorder, and many more. For the day, these dedicated advocates became the faces and voices of their organizations—advocacy organizations built on grit and passion and fueled by the power of transforming personal pain into political action.

The personal interactions in the room told a story that the table cards didn’t tell. I was transported back to the days of the TV sitcom Cheers, that friendly neighborhood pub famous for being, “a place where everybody knows your name.” Advocates weren’t addressed by their organization name, they were Andrew, and Valerie, and Laura, and Robin, and Jeanine. Dr. Insel knew every advocate by name. And, to them, on that day, Dr. Insel was just Tom.

The NIMH Alliance for Research Progress Screen Shot 2014-02-09 at 11.19.32 AMmeeting is a very special gathering and one of the few in which “blurred lines” are both appropriate and deeply human. Researchers, clinicians, policy makers, parents, sufferers, advocates, and allies—many of us wearing several of those hats—all come together to discuss progress, problems, and solutions in mental health research and policy.

I have been to this meeting on the other side of the table when I was Vice-President of the Eating Disorders Coalition, but this year I had the honor of speaking. I tried to educate everyone in the room about eating disorders and help the non-eating disorders organizations recognize that eating disorders are serious mental illnesses, not frivolous choices.

We researchers can get pretty myopic in our neurons, our gut micobiota, or our neuropsych testing. Attending this meeting is anchoring for me. It is a humbling reminder of why I do what I do and whom my research serves.

This year, the Alliance meeting taught me yet another lesson—and that was a lesson about courage. Most of the people in the room were there because they had endured suffering or pain inflicted by mental illness either directly or indirectly. For some it was the loss of a loved one to suicide, for others, the loss of life’s potential due to underdetection or inadequate recourses, and for some personal challenges with any one of the syndromes that populate the pages of the DSM-5. Pushing the button on the microphone to speak in that venue can be daunting. Add in a dose of social anxiety disorder or how close to the surface emotions are when you are an advocate and it can be absolutely paralyzing. Yet these advocates, spokespeople for their causes, forge ahead through any personal discomfort to ensure that their voice is heard. They embody courage in their passion to improve the world.

I was seated close to the spokesperson for the National Alliance to End Homelessness who was ignited by the wholly sensible mission of increasing housing security. We didn’t speak, but just sitting close to her for the day and seeing her table card got me to thinking. Several years ago at a winter conference, colleagues and I were approached by a homeless individual for spare change. One colleague muttered under his breath, “Give him money and he’ll just spend it on alcohol anyhow.” That comment revealed something about both my colleague and how homeless people are perceived. In contrast, my other colleague, said to the man, “Walk with me. Let me buy you a coffee and a doughnut.”  So we all walked over to a nearby coffee shop, bought the man a cup of coffee and a muffin, talked a little about how he was down on his luck, wished him well, and then somewhat surreally went onto our conference reception where there was lavish food and alcohol. This gracious colleague, who also happened to be an ordained priest, explained to the other, “Perhaps he might have bought alcohol, but this way at least I know he got a warm drink and some food into his belly.” This interaction permanently increased my respect both for my colleague and for people facing homelessness.

At the meeting as I was speaking about the Anorexia Nervosa Genetics Initiative and Charlotte’s Helix, I took a moment to honor Charlotte Bevan after whom the Helix was named. Charlotte died on January 13th, with her final wishes being to raise funds to bring genetic research on anorexia nervosa to the United Kingdom. As I talked about Charlotte, I caught Laura Collins’ eye, who was at the meeting representing Families Empowered and Supporting Treatment of Eating Disorders (F.E.A.S.T.). Charlotte and Laura are dear friends and they worked together to build the Helix. At the podium, looking at Laura, my eyes started welling up, my voice started trembling, and I was one step away from a full on cry. But then it was as if Charlotte gave me a little shake and reminded me why I was there. I was there to use my voice to carry on her work. Like the advocates in the room, she was courageous in her battle with breast cancer, and in her fight for research and services for eating disorders.

file0001998393869Building alliances among researchers, advocates, and clinicians is not always a feel good pleasure cruise. The challenge and the beauty of working together is that serious active listening is required and occasional painful feedback happens. Sometimes I feel gob stopped by a perspective that I had not anticipated, but it opens up a whole new way of thinking about a problem. Sometimes we get stubborn about our perspectives, but with continued dialogue we loosen our stance and begin to open our thinking to other filters. It’s easy to stay sequestered in your ivory tower. It takes more courage to unlock the lab and engage in the advocacy dialogue.

So I will now channel the inspiration I absorbed from the meeting back into my research. If I feel hesitant or reluctant to speak out on an issue I feel strongly about, I will remember the lesson in courage that I took from the Alliance meeting and I will forge past my own personal discomfort to serve as the voice for others who may not be in a position to advocate for themselves.

I am grateful for having had the opportunity to speak at the meeting and for the lessons that advocates continue to teach me well into the fourth decade of my career.