Wednesday, September 28, 2016

The Suicide Prevention Problem: We Need To Listen To the Real Experts

By Jess Stohlmann-Rainey


Photo by land[e]scape
Suicide prevention has a problem. There are some really important people whose voices are being left out. Some of the most important people. The people who know what it is like to want to die, but choose to live.

The lived expertise of suicide attempt survivors has been pathologized by the mental health community, and because of this it is often treated as invalid, unreliable, uneducated, or otherwise ill-informed. The production of knowledge in the field has come from one primary source: the “objective” researcher. There are a number of concerns with this being the primary source of knowledge production.




  1. Objectivity in research is a myth. The positionality of the observer impacts the way results are understood or interpreted. For example, most of the big names in suicidology are men. Men die by suicide much more frequently than women, and women attempt suicide much more frequently than men. As a field when we look at reducing the public health “burden’ of suicide, we look at reducing the number of deaths. This means that somehow, someone decided that the primary issue when it comes to suicide is suicide death. This puts the focus on reducing death and loss, not necessarily on changing, interrupting, or preventing the experience of suicidal intensity. Phrases like, “men bear the burden of suicide in the United States,” appear in public health documents and suicide prevention programs alike, but is that really the case? Would the women attempting suicide at four times the rate of men think that is true? Would their loved ones? Is the experience of suicidal intensity not a burden? Interpreting the meaning of numbers is almost certainly affected by the culture and identity of the person doing the interpreting.
  2.  Research funding is not neutral or equitable. Funding institutions have interests and priorities that are propagated by their investments. Returning to the example above, if the knowledge being produced tells us that we ought to focus on reducing death as opposed to reducing suffering, funding institutions will invest their money into research and strategies designed to prevent death. While this is not necessarily a bad thing, it does leave a significant gap around the practice of alleviating suffering. This means that while suicidologists may agree that means restriction is one of the most effective ways of preventing death (that we know of), it may not have any impact on the things that matter most to the person who is actually experiencing suicidal intensity. If suicide prevention just means literally preventing a death from occurring, it may be missing the bigger and perhaps more important issue of existential suffering.
  3. Where and how research is conducted are also not neutral or equitable. The vast majority of research is conducted in one of two ways. First, on college campuses or the community immediately surrounding research institutions. This means that participants in research reflect the campus community, tending to be higher income, highly educated, white, etc. Second, through a paternalistic approach which positions the researcher as a savior or rescuer, removing all power and agency from the subject. This feeds directly into the issues of the pathologization of the experiences of suicide attempt survivors.

None of this means that all research is bad, that the information we have is wrong, or that all research is conducted using these approaches. It does mean that some very important knowledge is being left out: the lived expertise of people who have considered and attempted suicide.
Photo by Luis Llerena


Seeing this valuable perspective marginalized within the field that is intended to support people experiencing suicidal intensity was frustrating for me, both as a professional and as a suicide attempt survivor. In 2015, the Carson J Spencer Foundation made a decision to put more emphasis on suicide attempt survivors in our programming. This shift opened an opportunity for me to develop programming by and for suicide attempt survivors.

The entire process of developing this program, from the questions we asked in the needs assessment to the analysis of the information collected has been completed by people who identify as suicide attempt survivors. Through the needs assessment process, we found a set of common experiences that participants felt were core components of their path to recovery.

Key Experiences

Five important categories of experience emerged consistently from people’s stories. What we heard, over and over again in the more than eighty interviews with suicide attempt survivors, is that the following experiences needed to happen for them to identify themselves as in recovery.

Becoming Willing to Live
Most people think that all suicide attempt survivors have this moment following a suicide attempt where they feel like they made a huge mistake, they wanted to live all along. Based on our interviews, some people had this type of experience, but it was more common for people to give in to the idea of living. We heard things like: “I figured out that being alive wasn’t the worst thing, even though it hurt...” and, “When I was in the hospital I was alone, in the corner with my dunce cap like “you have to find a way to stop hurting yourself.” Becoming willing to live is no easy process, and while it can be transformational for people, it doesn’t change all the factors that contributed to people’s desire to die. It is just the first step.

Finding Refuge
The next common experience was for people to seek out sheltering, positive, nonjudgmental spaces to heal. Some found physical spaces, like the participant who returned to her college town. “I went back to the town I went to college in because It was the last place I remembered feeling good,” she said, even though she didn’t know anyone who was still living there. Others found refuge with people who felt supportive. Another participant said, “I lived with friends who were safe, loving, and supportive. It was so much better than family.” Finding refuge is like laying the foundation for the other parts of the process.



Photo by Jochen Vander Eecken

Speaking Truth
Participants felt significant pressure to be silent about their experiences. They heard they should not talk about it from mental health providers in group therapy, their families, their friends, their doctors. Keeping their experience a secret was at best, annoying or frustrating, and at worse, shaming and contributed to more acute suicidal intensity. Telling was an important experience. One participant said, “It was just burning on my tongue. I felt like I had this big secret and I couldn’t go on keeping it. So I told. Then I couldn’t stop telling.” In The Transformationof Silence into Language and Action, Audre Lorde says “I have come to believe over and over again that what is most important to me must be spoken… I was going to die, if not sooner, then later, whether or not I had ever spoken myself. My silences had not protected me. Your silence will not protect you.” All of the participants expressed the sentiment that giving voice to experience was liberatory. One participant asserted, ”I felt so powerful when I finally talked about it. Like I wasn’t a slave to my secret anymore.”







Finding Kinship
Once participants began telling their stories, they began searching for others like them. Because their identities as suicide attempt survivors were so often erased, and the discrimination they faced was so significant, finding kinship networks of people who understood their experience became incredibly important. Being able to share recovery strategies, talk about the challenges they faced without judgment, and provide mutual support was integral to their journey. There has been a pervasive practice within the mental health system of not allowing suicide attempt survivors to share their experiences openly in groups, whether or not a clinician was present. It is clear from these interviews that survivors are not only finding each other and having these discussions anyway – one participant stated, “What was so weird was that in the hospital we weren’t allowed to talk about our attempts. So we said, “fuck you,” and started our own outside group afterward. We are still friends.” – but that finding kinship and solidarity with other suicide attempt survivors is an irreplaceable part of recovery. One participant explained how vital finding this network was, saying, “I just knew there had to be more people like me, and it was so much worse for us to just be all alone.” This was frequently cited as the most important experience. The importance of connectedness as a protective factor has been confirmed by suicide prevention research many times, so it is not surprising that this process was so imperative to the participants.

Developing Power
The final key experience that emerged was to developing power by making meaning of the experience. This experience was defined by actions that allowed something positive to come from their suicide attempt. The two most common ways of developing power were helping and activism. One participant served as Court Appointed Special Advocate for abused and neglected children. She explained, “I wouldn’t say I was “recovered” until after I started volunteering as a CASA. I couldn’t believe they let me do it, actually. I was so dark and twisty, who would let me help kids? But they did. It changed my life. I was part of something and it healed my soul.” Another participant worked on a crisis line, saying, “Once I got on that hotline everything changed. I was whole again, and I could help people. That was the moment I knew I would live. Really live.”

It is important to note that that throughout these interviews, there was no treatment or experience with the mental health system that participants identified as integral to their recovery process. This doesn’t mean that traditional mental health treatment was not effective; for some people it absolutely was. When in this process people found traditional treatment helpful varied greatly, and many of the participants did not find benefit in traditional treatment modalities at all. These findings indicate that recovery requires much more than traditional therapy, and that some practices in the mental health system actually prevent these key experiences from occurring.

What Next?

The mental health and suicide prevention communities should examine how these experiences are being supported or discouraged in their practice. Reducing the barriers to these experiences and promoting opportunities for them to happen. This information can also help friends and family of suicide attempt survivors better understand their experience.


The Carson J Spencer Foundation is using this data, along with other data gathered in this process to inform the development of a new care package for suicide attempt survivors leaving hospitalization settings. The contents of the package will be designed, reviewed, and approved by suicide attempt survivors, and will serve as a companion through the complex experience of recovery following a suicide attempt. For more information about this data, the collection process, or the development of this new program, please fill out our contact form with the subject “SOSA Blog”.

1 comment:

Unknown said...

Wow! Wicked wow! Jess, this is incredible. It should become the manifesto moving forward. I lost count of how many times I said "Yes!" after each sentence, let alone the entire piece.

This should be posted on the Zero Suicide listserv and everywhere else people are talking about suicide, wringing their hands about "what to do next," and making decisions but not - not - including and respecting the voices of the only people who can really offer hope to those on the edge...and keep them from stepping off.

I sincerely hope this is read and embraced across the world. We must change direction. We must stop doing what we always do. It's not working.

Thank you for standing up and sharing this.

Wow!

Annemarie Matulis, Executive Producer & Director, www.avoiceatthetable.org