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”.

“Words Make Worlds”: Language and the Culture of Mental Health in Workplace Wellness

by Donna Hardaker and Sally Spencer-Thomas

Part III: Words about Mental Health

In Part I: “Words Make Worlds”: Language and the Culture of Mental Health in the Workplace”, we explored the rationale for being mindful and intentional about language as we address stigma and social prejudice due to archaic and unconscious speech. In Part II, we addressed specific language about suicide. Here in Part III, we look at specific language about mental health.

“Power is the ability to define reality and to have other people respond to your definition as if it were their own.” – Wade Nobles

“Words are powerful. Old and inaccurate descriptors and the inappropriate use of these descriptors perpetuate negative stereotypes and reinforce an incredibly powerful attitudinal barrier.” – Kathie Snow

Workplaces are microcosms of society as a whole and have a significant contribution in generating social inclusion or exclusion. Workplaces can be powerful change agents when they create caring cultures through mindful attention to how suicide and mental health are discussed.

Photo by Benjamin Child

It is difficult for us to write this article in a simple “Say This” and “Don’t Say This” way. The topic is far more complex than swapping out words. This discussion is inside of a social movement (generally referred to as the recovery movement) that seeks to draw attention to unconscious bias held by the powerful dominant group who own and operate the communication methods that describe people who are not in the dominant group.

Generally, clinicians are the dominant group who name this experience. Clinicians use diagnosis-based thinking. Thoughtful language about mental health and suicide does not rest on diagnostic categories, but rather tries to communicate more clearly, accurately, individually and holistically about the experience. We constantly look to find language that is dignified, empowering, and inclusive as well as being as descriptive as possible.

This is not about political correctness. It is about altering how we all speak, and therefore how we all think, in order to permanently end social injustice in this area. Just as with other social justice movements, polite society no longer accepts these terms: “mental retardation”, “handicapped”, “colored”.

It is not easy to find “the best” language; we are forced to use common terminology developed by the dominant group that does not emanate from the empowered voice of the people being talked about:

1. The terms are often clinically based and clinically biased. Many people in the recovery movement push back against the term “mental illness” because it puts the descriptor of a person in medical language. This forces a medical presence inside the naming of a group who do not always wish to be identified based on a medical perspective. The medical model, when socialized in the media and in boardrooms, contributes to rampant oversimplification that looks like this: “All that has to be done is to get these ill people to seek treatment, they take a pill and they are fixed!” It is important to keep in mind that diagnosis serves the medical practitioner in treatment planning. It does not provide good information or understanding about the whole person and encourages us to see a person only in terms of a medical condition. And diagnosis is often incorrect, so should not be the focus of how we educate.

Clinical bias mostly does not include a trauma-informed approach. It is very common for people who have received a label regarding mental health or substance use to have a significant history of trauma. 

This correlation is ignored in the language, and often in treatment too. The trauma experience is not addressed, only the set of “symptoms” currently seen.

2. The choice of words is not mindful. In heavy usage is the word “suffering” as in “people who suffer from depression”. This paints a pathetic picture of nothing but suffering inside this experience, which is a fallacy while suggesting a passive state of inaction.

Another common term is “the stigma of mental health”. This word usage infers that there is stigma inherent inside of mental health. Instead, words should more accurately describe that stigma is an attitude of prejudice towards a group of people by a group of people who are dominant. See below for suggested alternatives.

3. Terms promote “other than” thinking. The words “disorder” and “disability” inform us that those who fall into these categories are other than “ordered” or “able”. “Order” and “able” are the givens, the desirable things, the “normal” things.  “Dis” infers “other than” and forces the thought that a person described this way has a value relative to the desirable given, and of course falls short. 

Consider this: the term “non-white” is not used to name a person who is other than Caucasian because it would be deemed to be disrespectful. Unfortunately, we do not have a wording solution to this dilemma.

4. Better terms require more words. Because we are forced to use terms that represent dominant culture mindsets, we can refer to them as labels, not as the “truth”. For example, a better way of saying “a person who has a mental illness” could be to say: “a person who has the experience of having been assigned a medical label in the category called ‘mental illness’ “. But this makes writing and speaking very cumbersome.

5. We do not have consensus around best language. Inside the recovery movement, we do not have consensus on best language, and that is okay. Let’s all keep thinking about this, talking to each other and pushing us collectively toward better communication.

The chart below provides some principles of progressive language. The suggestions that appear in the right-hand column are far from perfect, and we hope that they will continue to adapt and improve. To fulfill our desire to support self-determination, please note that if a person with the lived experience of a mental health challenge wishes to identify themselves using language from the left-hand side of the chart below, we support their choice.

(This is not an exhaustive list, and for reasons of space does not hold all the terms and usage that we wish would change.)

Moving language away from…	Moving language toward…
Phrases that perpetuate incorrect thinking ·         “stigma of mental health” ·         “mental health stigma” Infers that there is something inherently stigmatizing about mental health.	More appropriately descriptive phrases ·         “stigma, discrimination and social prejudice towards people who are deemed to be in the group labeled as having a mental illness” We recognize that this is too long, but let’s continue in this vein! Especially important is the insertion of “social prejudice” to call out the group who are engaged in the attitudinal damage.
Words that promote only one aspect of the experience ·         “people suffer from a mental health challenge” ·         “people who struggle with a mental health challenge” It is inaccurate to indicate that the entire experience is one of suffering and struggle.	·         “have a mental health challenge” ·         “lives with a mental health condition” ·         “living through suicidal thoughts.” Language here begins to communicate resilience. It could be appropriate to speak about functional impact with use of the word “struggle” ·         “overcomes struggles with concentration” ·         “finds ways to cope with the struggle of fatigue”
Confusing lay usage of clinical terms ·         “he is acting so bipolar” ·         “the weather is schizophrenic”	Test your language by swapping out a term for an experience that is generally accepted, for example, you wouldn’t say “he is acting so diabetic” or “the weather is cancerous”
Hate speech ·         “psycho” ·         “cray-cray” ·         “nutjob” ·         “whacko” ·         “lunatic”	Respectful language that promotes dignity. Ask: would you enjoy the word being used to name someone you care about? ·         ”a person in distress” ·         ”a person in emotional distress” ·         ”a person with a history of psychological distress” ·         ”a person experiencing a mental health challenge” ·         “a person living through overwhelming life challenges”
Language that cuts a broad swath and defines people by their conditions. ·         “the mentally ill” ·         “the homeless” ·         “the disabled”	Wording that recognizes individual experiences and differences. ·         “people who have mental health challenges” ·         “people who live with mental health issues” ·         “people whose experiences are labeled as a mental illness” ·         ”people who experience homelessness”
Language that uses clinical or legal identifiers ·         “a patient” ·         ”a case” ·         ”a client”	·         ”a person who is engaged in treatment” ·         ”a person who is receiving services”
Language that emphasizes a diagnosis, not the person ·         “he is a schizophrenic” ·         “she is bipolar” ·         “he is an addict”	People-first language ·         ”he is a person who has received a diagnosis of schizophrenia/bipolar disorder” ·         ”she is a person who experiences addiction” ·         ”he is a person who identifies as an addict” Shorter, but problematic due to diagnosis as a descriptor: ·         “he has schizophrenia” ·         “she lives with an anxiety disorder” ·         “she is in treatment for depression” ·         “she is coping with the effects of trauma.”

Portions of this chart have been adapted with permission from Each Mind Matters, California’s Mental Health Movement, funded by counties through the Mental Health Services Act (Prop 63).

In conclusion, words matter, especially where there is such a long history of marginalization, misinformation, and mystery around daunting topics. When it comes to language related to mental health, we may not have all the right answers, but many of us are in the struggle to do better.

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ABOUT THE AUTHORS

SALLY SPENCER-THOMAS: As a clinical psychologist, mental health advocate, faculty member, and survivor of her brother's suicide, Dr. Sally Spencer-Thomas sees the issues of suicide prevention from many perspectives. Currently, she is the CEO and Co-Founder of the Carson J Spencer Foundation, a Denver-based organization leading innovation in suicide prevention. One of the main programs of the Carson J Spencer Foundation is “Working Minds: Suicide Prevention in the Workplace” – the nation’s first comprehensive and sustained program designed to help employers with the successful prevention, intervention and crisis management of suicide (www.WorkingMinds.org). Additionally, she is the Co-Lead of the Workplace Task Forces for the National Action Alliance for Suicide Prevention, and the Co-Chair of the Workplace Special Interest Group of the International Association for Suicide Prevention.

DONNA HARDAKER:Donna is an internationally recognized industry expert in the emerging field of workplace mental health. She is an award-winning curriculum developer, advocate, public speaker, writer, and advisor, who has leveraged her personal experience of mental health challenges and their impact on her employment history into a significant body of work. She is the Director of Wellness Works, a workplace mental health training program of Mental Health America of California that has been evaluated as highly effective in stigma reduction with lasting behavior and culture change. She is also a member of the Workplace Task Force for the National Action Alliance for Suicide Prevention. Donna is from Toronto, Canada, but now lives in Sacramento, where she greatly enjoys the California sunshine.

Learn more about the National Action Alliance for Suicide Prevention: http://actionallianceforsuicideprevention.org/