Without Suicide Survivors...
By David Covington, L.P.C., M.B.A., Chief of Adult Services, Maricopa County Regional Behavioral Health Authority, Magellan Health Services
Over twenty-five years ago, Nancy Brinker began working to do everything she could to fight and end cancer. Today, she is CEO of the Susan G. Komen for the Cure organization that was named in honor of her older sister who died of breast cancer at age 36. The famous pink runner ribbons represent a phenomenally successful fundraising effort for research, all of which started with the remarkable efforts of a bereaved family member looking to translate a tragic personal loss into a positive difference for many others.
The incredible successes of the suicide prevention movement over the last decade have a similar story. In 2010, the National Action Alliance was launched, a public-private partnership that represents the most significant and large-scale national suicide prevention effort to date. The Secretaries of the Department of Defense and the Department of Health and Human Services spoke at the initial meeting.
This level of success would never have been possible without the tireless dedication of hundreds and thousands of family members and friends who were personally touched by suicide deaths and who have been advancing suicide prevention for over fifty years. These pioneers include individuals like Atlanta’s Iris Bolton whose son Mitchell died in 1977. Iris went on to a long career and international influence. In the suicide prevention field, we have referred to these champions as “suicide survivors.”
In 1996, one of America’s top cyclists Lance Armstrong, just 25 years old at the time, was told he only had a 40% chance of surviving testicular cancer that had spread throughout his body. He survived and went on to win the Tour de France seven times. More importantly, he led an international focus on cancer awareness, funding and research. More than 70 million yellow wristbands have been sold with the LIVESTRONG message.
“Nothing about us without us.” This phrase originated with the disability rights movement and was later adopted by peer leaders with serious mental illness. It represents the desire to participate fully in systems design and policy change, a process that has frequently been driven in the suicide prevention field by administrators, policy makers, researchers, provider agencies and/or family members without the individuals who would be most impacted sitting at the table. By contrast, some of the cancer movement’s strongest voices have been those individuals who lived through the disease.
About a decade ago, three of the nation’s top suicide prevention researchers were asked how they went about finding individuals to interview about their life experience with suicide attempts. One of them answered matter of factly that he had never spoken to an “attempter,” and the other two agreed. It just was not the culture or practice for the first forty years of the movement. This relative absence seems odd given the intrusive and coercive nature of many suicide intervention practices, including law enforcement involvement, involuntary hospitalization, etc.
In 1998, the Institute of Medicine developed architecture for a twenty-first century healthcare system, Crossing the Quality Chasm. Don Berwick was a primary author and uses “Nothing about us without us” in a different context, to elucidate the concept of patient centered care. The third of ten simple rules in the report was “the patient is the source of control [not the professional].” Berwick calls himself an extremist for patient-centered care. “What scares me: to be made helpless before my time, to be made ignorant when I want to know, to be made to sit when I wish to stand, to be alone when I need to hold my wife’s hand, to eat what I do not wish to eat, to be named what I do not wish to be named, to be told when I wish to be asked, to be awoken when I wish to sleep.”
In the last ten years, we have begun to see emerging voices from individuals with lived experience of suicide like Terry Wise, Eduardo Vega, Katie Ayotte and (most recently) Marsha Linehan. These are some of our strongest advocates of engagement and collaboration. The maxims from the Quality Chasm report are extremely relevant in this context: “Every patient is the only patient” and “The needs of the patient come first.”
The National Action Alliance offers a unique opportunity to celebrate the work that has been done over the past half-century, much of it borne on the shoulders of family members determined to make a difference despite the lack of public interest and the ever-present shame and stigma. However, we should also use this time to broaden our base, and to welcome and strengthen the voices of those who have lived through a suicide attempt and survived.
Nothing about us without us. Research over the past decade has taught us that engagement and collaboration (the relationship with individuals at risk of suicide) helps to save lives. Perhaps stronger inclusion in the suicide prevention movement of individuals with lived experience of suicide will teach us that the stronger relationship is not just a means to better outcomes– it is the better outcome.