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This past Monday, the city of Boston came together to cheer on the over 32,000 people who ran the 118th Boston Marathon.
A year after the tragic and traumatic Boston Marathon bombing, Boston rose and Boston shone.
In the weeks leading up to the Marathon, pictures and stories of Marathon bombing survivors were everywhere. People who lost limbs, people who lost sight, people who lost hearing. People who lost a child.
For a few weeks, it seemed like everyone was talking about survival. These survivors, changed and scarred, were the experts consulted about what it means to try to move forward and to start the next part of life.
Along the same timeline, many of us in the suicide prevention world watched and heard another story about survivors.
A tipping-point-style revolution was taking place in the suicide prevention movement.
In March, a historic gathering called the Lived Experience Summit brought together people who survived suicide attempts with policy makers, researchers, and crisis workers to clearly personalize the issue of suicide prevention, change the dialogue, and make the priorities and experiences of people who have attempted suicide a part of setting the agenda for the suicide prevention movement.
In April, the American Association of Suicidology created a division for Suicide Attempt Survivors and People with Lived Experience, putting on par the experience of people who attempted suicide with people who study and treat people who attempted suicide.
I can't overstate what a pivotal moment we are reaching in the field.
The suicide prevention movement is aligning with a movement in health care to value lived experience as much as—if not sometimes more than—what professionals know. Across the country, clients, consumers, end-users, patients, are being asked to partner with professionals to improve the quality of care. They are being asked as experts—experts of their own, tremendously valuable, experience.
I've been privileged to witness the power of medical and mental health professionals working in partnership with patients in Boston, and it doesn't cover it to say that having patients (and family members) at the table alongside the people who design and provide care changes the conversation. It turns the conversation on its head.
For example, only a family member would know what it feels like to visit their loved one on an inpatient psychiatry unit. Only a family member would notice things like the color of the paint in an elevator (a terrible golden-green that does not inspire wellness or hope), or the sign "greeting" anyone entering the unit that says "Beware of patients trying to flee." For staff and providers, these aspects of the environment are everyday. For patients and families, they are part of the experience of care. And we can do better.
In addition to providing new and often better ways of thinking about care as an experience, it's much harder for professionals to just talk statistics when the people who represent the statistics are at the table right next to you. Professional language can change, for the better. The kinds of shifts we see as a result of hearing from clients and consumers lead away from stigmatizing, labeling language (like saying "people with borderline personality disorder" instead of the essentially meaningless but extremely loaded "borderlines").
Finally, dramatic changes are happening with medical records. If doctors' notes are opened to patients, doctors may write differently—more clearly, more efficiently, more effectively. Imagine a suicide attempt survivor reading a psychiatrist's note that, in addition to including information about the attempt, also included what the doctor saw as that person's strengths. (We're a ways off from that example as reality, but here, my colleagues at Beth Israel Deaconess Medical Center in Boston say loud and clear: let's show patients their mental health records.)
As we approached Marathon Monday in Boston and I scrolled through pictures of people who had their lives changed in a second last April, I forced myself to see their vulnerabilities. I made myself look at things that usually make me uncomfortable. I zoomed in on prosthetic legs and angry scars. I, changed but not scarred, had so much to learn from these people, these people who have turned what I see as vulnerability to strength.
Don't we all?
Copyright 2014 Elana Premack Sandler, All Rights Reserved
