Historic Summit Celebrating Lived Experience (San Francisco)

prideIn “Silver Linings Playbook,” Pat Solitano talks about his friend Tiffany with his psychiatrist. He questions whether he, like Tiffany, can like “that [‘shameful’] part” of himself along with all the other parts.

“Can you?” Dr. Jones asks.

“You’re really asking me that question? What, with all my crazy sad[ness]… Are you [completely] nuts?” Pat says.

And yet, Dr. Jones was spot-on. Pat was developing a beautiful and positive philosophy that originated from his prior lived experiences with bipolar disorder. Whether we can like all the parts of ourselves is a question we typically have trouble relating to, and yet our experiences make us who we are.

Last week in San Francisco felt very much like that scene from the movie. Gathered together at the “Lighting the Way Forward National Summit on Lived Experience in Suicide” were individuals with prior suicide attempts sharing their expertise and experiences with more than 20 policy makers, researchers, crisis workers, and family members engaged in suicide prevention. The Mental Health Association of San Francisco sought out national peer leaders who have attempted suicide — individuals who know intimately the issues, agony, and decision-making behind being actively suicidal. The landmark event held on March 6, 2014 was the product of two task forces of the National Action Alliance for Suicide Prevention: the Zero Suicide in Health Care Task Force and the Suicide Attempt Survivors Task Force.

Instead of token representation and a “seat at the table,” these individuals with prior suicide attempts owned the table. Fifty percent of the participants shared prior lived experiences with people such as SAMHSA’s suicide branch chief Dr. Richard McKeon and EDC’s Suicide and Prevention Resource Center Director Dr. Jerry Reed. The conversation, facilitated by National Suicide Prevention Lifeline’s Executive Director John Draper and Mental Health America of San Francisco’s Executive Director Eduardo Vega, produced a tone and spirit unlike any we have encountered before. Suffering and courage were major themes and were described as essential elements that unite and strengthen us.

Lighting the Way Forward Lived Experience National Summit 2014We also celebrated the milestones that had brought us to this point. Dequincy Lezine shared his experience of “coming out” as a researcher and person with lived experience of suicide twenty years ago, and the feeling of being that lonely voice. Many group members participated in the first-ever OASIS National Conference for Survivors of Suicide Attempts, Health Care Professionals, and Clergy and Laity in Memphis in October 2005 or in the National Suicide Prevention Lifeline’s Consumer/Survivor Subcommittee. Heidi Bryan, CW Tillman, and Jason Padgett talked about their watershed plenary session on Suicide Attempt Survivors at the American Association of Suicidology conference in 2011. Later that year, Cara Anna launched her prolific Talking About Suicide blog, where she interviews individuals about their own suicide attempt stories.

DeQuincy Lezine summarized for the Action Alliance the recommendations of an upcoming paper by the Suicide Attempt Survivors Task Force, “The Way Forward: Pathways to hope, recovery, and wellness with insights from lived expertise.” The draft builds from eight core values:

  • Inspire hope, meaning, and purpose
  • Preserve dignity; counter stigma, stereotypes, and discrimination
  • Connect people to peer supports
  • Promote community connectedness
  • Engage and support family and friends
  • Respect and support cultural and spiritual beliefs and traditions
  • Promote choice and collaboration
  • Provide timely access to care and support

The group also reviewed the core recommendations from the Zero Suicide in Healthcare task force (whose members include David Covington, John Draper, Richard McKeon, Jerry Reed, and Becky Stoll, VP for Crisis and Disaster Mgmt, Centerstone America), looking for synergies between the two. The core recommendations are:

  • Create a leadership-driven, safety-oriented culture committed to dramatically reducing suicide among people under care
  • Systematically identify and assess suicide risk levels
  • Ensure every person has a timely and adequate pathway to care and supports
  • Develop a competent, confident, and caring workforce
  • Use effective, evidence-based care, including collaborative safety planning, restriction of lethal means, and effective treatment of suicidality
  • Continue contact and support, especially after acute care
  • Apply a data-driven quality improvement approach to inform system changes that will lead to improved patient outcomes and better care for those at risk

Zero Suicide believes that suicide is preventable…always, even up to the last minute. This idea resonated with many peers in the group, who turned the discussion to improving the clinical relationship. Richard McKeon said that coercion represents a system treatment failure, and Leah Harris of the National Empowerment Center agreed, saying “treatment should never feel like punishment.” There was much discussion about shifting the focus of systems from safety to collaborative care. John Draper talked about the fear that underlies these approaches, saying that 50% of behavioral health staff self-report that they lack the training, skills and/or supports to be effective and to really help.

Summit participants then broke into three small groups to identify core messages and strategies for communicating them, and Tom Kelly set the tone: “Transformation is not doing things better, it’s doing things differently.” Leah Harris summarized the discussions of her small group, which called for recovery principles to be infused into systems of care, saying “We need to focus on what is strong, not what is wrong.” Sally Spencer-Thomas of the Carson J. Spencer Foundation reflected on stronger continuity of care as “really about not giving up on someone.” The overall consensus was that we should use the word “safety” less and use the word “recovery” more, which reflects greater efforts at positive engagement and increased optimism. Staff need training, and there was a moment where we all felt “we can do better.”

Celebrating Lived Expertise, I am not a lost causeThe Summit was unlike any previous national meeting about suicide prevention that any of us have ever participated in. Carmen Lee of Stamp Out Stigma told the group, “I’ve always been considered a client. This is the first [time] I haven’t felt that way.” An often-repeated message throughout the day came from Sabrina Strong of Waking Up Alive who said, “I’m a person. I’m not a lost cause.” Feeling Blue’s Heidi Bryan teared up discussing the “magnitude of this moment” and the “respect and dignity that is being given to all of us attempt survivors.” There was a shared commitment to celebrate survival and the expertise that comes with experience. It was truly a momentous day.

After the San Francisco summit, it was impossible not to reflect on the stunning change in social views and legal standing of individuals in the LGBT community over the last 50 years. As a recent article stated, “Progress came about largely due to the individual choices of countless gays and lesbians to come out of the closet and get engaged.”

In a similar way, the early activists and courageous suicide attempt survivors who joined us at the summit are paving the way towards a whole new social view of suicide and its prevention, giving a voice to countless individuals. We look forward to the day when the views and beliefs about suicide that many of us hold today seem archaic and outdated because of the individuals who will have come “out” by sharing their personal experiences with suffering, courage, and survival, and giving us strength. This summit, although only one day, has been a very important step in that journey.

*Note: Special thanks to Eduardo Vega without whose tenacity and leadership this event would never have taken place and SAMHSA and the SPRC for their support. Also would like to acknowledge the participants whose tweets created a real-time documentary of this historic moment, including @drlezine, @sspencerthomas, @AboutSuicide, @eduardomhasf, @leahida, @NMSPC, @cdubs703, @melodeeee and others.

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