Parallels in obstetrics and psychiatry

 

Parallels in obstetrics and psychiatry

By Leah Harris

It often strikes me as to how my experiences as a psychiatric survivor color most facets of my life, informing my perspectives and my choices in so many ways.

When I became pregnant, I immediately knew that I did not wish to give birth in a hospital setting. Given my past history with involuntary hospitalization and drugging, hospitals are traumatizing places for me and I avoid them at all costs.

Yet, in early pregnancy, I honestly didn’t know of the other options available to me. Even for someone like me, who was already skeptical of mainstream medical approaches, it took a lot of research to uncover the truth about birth. Luckily, there is a growing movement out there of dedicated natural birth activists who seek to educate mothers and families about the birth options available to them. Ina May Gaskin is considered one of the gurus of this movement, which has attracted celebrities like Ricki Lake (who made a great documentary called The Business of Being Born).

As I got deeper into the research about childbirth options, I began to notice the commonalities between the natural birth movement and our movement of users and survivors of psychiatry. The first commonality is that we are confronting industries – the birth/obstetric and psychiatric industries, respectively. In both cases, the trend is toward the most invasive medical technologies, which also just happen to make a lot more money for these industries. When it comes to mental health – as we all know, it’s institutionalization, shock, and expensive psych drugs.

When it comes to birth, the parallel is in unnecessary Cesarean sections. While I do believe that in some cases, c-sections are truly necessary, life-saving procedures, they are performed far too often. The U.S. happens to have one of the highest c-section rates in the world, yet maternal mortality rates have not declined since 1982. Basically how it works is that through a cascade of medical interventions – electronic fetal monitors, epidurals, labor-inducing synthetic hormones like pitocin, etc – many mothers end up with c-sections that could have, in the vast majority of cases, been avoided without the interventions.

On this subject, I highly recommend Suzanne Arms‘ book Immaculate Deception II: Myth, Magic, and Birth, which provides a little-known historical perspective on the birth industry. Among the frightening practices of obstetrics in the 20th century was “twilight sleep” – the administration of a powerful narcotic and drug which would literally knock mothers out to the extent they had no recollection of the birth experience. The use of twilight sleep was common well into the 1970s.

Same story that you may recognize when it comes to mental health: a history of brutal “treatments,” expensive technologies, lots of medical experts, disempowered “patients,” and unimpressive outcomes. Another commonality is that the truth about natural alternatives is suppressed. There is a growing body of evidence, for example, that home birth is as safe, if not safer, than hospital birth, yet this information is not known to the general public. Most childbirth classes are run by hospitals themselves, so parents are not typically exposed to any alternate viewpoints.

By the time I got to the beginning of the third trimester of my pregnancy, and was assured by my midwife that there were no complications, I began to seriously consider having a home birth. I knew that the only place I’d truly feel comfortable giving birth to my baby was at home; and since I knew I didn’t want epidurals or other drugs, there was no reason not to have a home birth. I lived within a 10 minutes’ drive of several hospitals, so if something were to go wrong, I would have that option open to me.

In the end, I am ecstatic that I chose a home birth. While childbirth was by far the most physical pain I had ever experienced, I benefited from natural pain relieving methods – a birth tub filled with warm water (which I stayed in for hours), meditative breathing techniques, vocalization, and the application of pressure on my lower back.

At home, I was allowed to labor at my own pace, in my own way, to move around freely (rather than be stuck on a bed with a fetal monitor on my stomach), to make any noise I wanted, to eat and drink as I pleased. Best of all, I was surrounded with the people I chose to have around me – my partner, an experienced midwife, a caring doula. All were there to make sure I had the best possible birth experience. Having a home birth was the most empowering experience of my life.

I had a relatively long labor, because my son was in a bit malpositioned in the birth canal, which made it harder to push him out. My midwife said that if I had been in the hospital I would have for sure ended up with a c-section. Hospitals tend to have an unspoken 12-hour rule for labor, as they want to process mothers in and out as quickly as possible. I had an 18-hour labor so I would have surely been out of their time frame, and in line for a section.

Another interesting thread that winds through the birth and psychiatric industries is the way that these industries manipulate our culture’s fear of pain. Women in the modern era are incredibly fearful of the pain of childbirth, as we typically never witness a childbirth before our own. The attitude of most women today is “why would I want to put myself through that, when there are perfectly good drugs out there that block the pain?”

Yet few seem to consider the implications of the wide-scale disruption of the natural birth process, or the long-term effects of drugs and other interventions during birth on babies. We do know that post-partum emotional distress can often be triggered by a mother’s profound disappointment in her birth experience. I believe there may be long-term societal repercussions to the c-section epidemic that we may not understand fully for years to come.

Suzanne Arms, author of Immaculate Deception II, says it best:

Drugs, technology, and surgery should be used in service of the whole person and the whole relationship of mother, child, and the entire family. Not to do so creates human beings who are disconnected from their bodies and from the earth…then we begin to behave in ways that do damage to both. It is by being intimately connected to one another that we can learn what it is to be connected to life as a whole. We must pay attention to what is natural…and follow that course, or the long term price we pay will be dear.

In our culture, we are taught to fear and avoid any kind of pain. We are taught to eradicate it by any means possible. Of course, we are all human, and most of the time we do prefer to live without pain and suffering. But there are some kinds of pain that serve a purpose. Labor is certainly pain with a purpose, and much of our emotional distress also serves important purposes, as Al Galves recently wrote about here.

I think about the home birth process, and how it is a wonderful example of the power of self-determination: from start to finish, the mother chooses. She chooses her support people and she chooses how she wishes to labor. She is seen as the expert in her process, she is empowered to trust her body to do what it is supposed to do, and she has the emotional support to endure the experience of childbirth without medical interventions.

These are the aims of our movement as well – we view people as the experts on their own lives. We advocate for letting people move through distress in the way they see fit, with the supports (if any) that they choose – not to have their experience shut down prematurely by forced drugging or hospitalization.

I will always be grateful to have birthed a healthy baby with no drugs, no doctors and nurses and random people running around, no bright fluorescent lights, no invasive procedures performed on my baby after birth, just quiet and peace and tears of joy and relief as my newly born baby was laid on my chest. The memories of this experience are among the dearest of my life.

What I wish is for our movement, and the natural birth movement, to make deeper inroads into spreading awareness about alternatives and choices – to make the truth known about the industries that profit from our fear and pain and disrupt the natural flow of life. I wish for a world in which babies are born peacefully, and in which people in emotional pain can move naturally through their experiences with whatever sort of “midwife” they choose. In this way, I hope that we can build a future where, as Suzanne Arms so eloquently puts it, we are all increasingly connected to our bodies, to our spirits, to the earth, and to each other.

leahLeah Harris, M.A., is a mother, advocate, and storyteller who has written and spoken widely about her lived experiences of trauma, addiction, serious mental health challenges, and recovery. Leah is director of communications with the Bazelon Center for Mental Health Law, and consumer affairs coordinator with the National Association for State Mental Health Program Directors (NASMHPD). She is the coordinator of Recovery Now! a public awareness campaign designed to educate the public about recovery and recovery-oriented systems reform. Leah’s writing has been published in The Huffington Post, Mad in America, Truthout, the Philadelphia Inquirer and the Pittsburgh Post-Gazette. http://www.leahidaharris.com

see also

The Mama Sherpas

this is the article from the Daily Beast:

Why I Am a Birth Feminist

My C-section experience felt completely out of my hands and led to much pain and suffering. But there’s a way for women to make more empowered decisions about giving birth. (read more and see the trailer here)

Suicide Prevention for All: Making the World a Safer Place to Be Human

By Leah Harris

Is it melancholy to think that a world that Robin Williams can’t live in must be broken? To tie this sad event to the overarching misery of our times?

– Russell Brand, comedian/actor

Like millions, I am sitting with the fact that one of the funniest people to grace the planet has died by his own hand. Robin Williams’ death has hit people of my generation, Generation X, especially hard. After all, his face flashed often across our childhood screens. Mork and Mindy episodes were a source of solace for me as a little girl, as I bounced around between foster homes and family members’ homes, while my single mother cycled in and out of the state mental hospital, fighting to survive. I could laugh and say “nanu, nanu – shazbot” and “KO” and do the silly hand sign and forget for just a little while about living a life I didn’t ask for.

robin“You’re only given one little spark of madness. You mustn’t lose it,” may become one of Robin Williams’ most famous quotes. I was always struck by how he moved so seamlessly between wacky comedy and the most intense dramas. He was so magnificently able to capture the human experience in all its extremes. He threw all that intensity right into our faces, undeniable, raw, frenetic. He showed us our own naked vulnerability and sparks of madness and gave us permission to laugh in the face of all that is wrong in this world.

In the wake of his death, many people are understandably jumping to identify causes. Depending on who you talk to, Robin Williams’ suicide was caused by depression, it was caused by bipolar disorder, it was caused by the drugs, prescription or otherwise. We just don’t know.

As a suicide attempt survivor myself, I can attest that it’s not that easy to find any single cause for the urge to die. It’s true that along with street drugs, SSRI antidepressants and other psych drugs can certainly increase suicide risk in some people. A decade ago, I was one of many who fought and won to get to the FDA to put a black box warning on SSRIs to warn the public of these very real risks. While a drug, legal or illegal, may give us the impetus we wouldn’t otherwise have had to act on suicidal thoughts, for some of us it’s more complex than that.

Our reasons for wanting to die are as varied as our reasons for wanting to live. That, I believe, is the great mystery of suicide.

But I invite us all not to fear the mystery; not to be struck hopeless by it. We can save each other’s lives; better yet, we can find and share reasons to keep on living. If we have 20 seconds, we can share information about a hotline or a warmline. But if we want to really see this horrific epidemic end, we all have to get more involved.

As someone who has looked into the void and longed for it more than once, I can attest that anyone who reaches out in those darkest of times is truly remarkable. It is, tragically, when I am most distressed and most in need of love and acceptance, that I have the hardest time reaching out. This is not an absolution of personal responsibility, because we all must accept some measure of that; rather a recognition that we shouldn’t put the full onus on a suicidal person to “reach out” and “ask for help.” We need to reach out and help. I have written about the problems with the master narrative of suicide prevention, and how punitive and dehumanizing much of the “help” out there currently is. This blog isn’t about that. I’m talking about help that heals.

My point is that we must change the way we relate to ourselves and one another. In revolutionary ways. We must wake up to the fact that we have been socialized since birth to hide the fullness of who we really are. Robin Williams got to act it all out and the world loved him for it. He expressed the madness, the wildness, that we have been conditioned to hide. We are generally chastised for laughing too hard or crying too loud or being too sensitive. We have been trained to put on a proper face and act like all is well. If for some reason we can’t naturally do that (and most of us can’t), we devise ways to cope with the awful unbearableness of it all. They may be fairly innocuous, like binge watching Orange is the New Black in bed all weekend long. Or we may seek to stop the pain in innumerable ways that we know will kill us in the end — from binge eating to chain smoking to staring down a bottle of whiskey or pills.

If we only realized just how many people walked around carrying heavy burdens that are invisible to the world, and were doing every fucking thing possible to keep from cracking under the weight, we would stop feeling so alone and isolated carrying our own. We could put down our burdens and rest, in the all-encompassing field of our human vulnerability and strength.

“Be kind, for everyone you know is fighting a hard battle,” said theologian Ian MacLaren. I am struck by the imperative need for us all to take up the challenge to be kinder to ourselves and others. There is so much suffering in the world. How often do we ask ourselves, in the midst of responding to Facebook posts, Tweets, and emails: how can I relieve suffering? At the very least, how do I not add to it?

No one person can fix this mess we have gotten ourselves into as a species, but we can each be a part of bringing more compassion and acceptance into the world. First, we have to learn to practice it with ourselves. We can be the antidote to the fear and sorrow that exists within us, in other people, and in the world “out there.” Kindness is dismissed as bullshit in a world that values power over others. But as mindfulness teacher Sharon Salzberg reminds us, kindness is a “force.” If unleashed in vast quantities, it could literally reverse the cycle of misery on this planet.

When will we stop walking around in these miraculous, vulnerable human bodies seeing ourselves as separate? What will it take for us to realize our interconnectedness; to act from a deep understanding that suicidal people are not to be feared and judged, but to be embraced and held in the light of understanding and true empathy? Empathy sees that we are all connected, and thus demands well-being for all.

I think of the people who report walking to the bridge and said to themselves, “if one person smiles at me or talks to me, I won’t jump.” Lately I try to go out of my way to smile at people, to talk to people, even if they look at me funny because they aren’t used to random strangers smiling at them or talking to them. Come to think of it, I think talking to strangers is definitely a symptom of some severe mental disorder in the DSM-V.

But seriously, folks. It strikes me that breaking down our collective walls of isolation, of chiseling away our carefully constructed masks, of taking care of ourselves and each other, of judging less and loving more, may be among the most important things we can do with our lives. We can simply value people, not for what they do or what they achieve in the world, but because they are alive on this planet with us, right now, sharing these troubled, turbulent and painfully beautiful times.

In the end, we are stunningly diverse, yet there are basic human needs that we all have in common. The ancient practice of lovingkindness exhorts us to wish for ourselves and all beings to be safe, to be healthy, to be free, to live with ease. How can we create a world where these universal human needs are met? I think this is one of the primary questions we should all be asking ourselves right now, and figuring out the answers together.

I don’t claim that smiling at the person who makes your coffee or talking to a stranger on the metro will save the planet. What I do believe is that if we all made human connection, safety, and a sense of shared belonging among our top priorities, if we all tried in ways large and small to end our collective isolation and suffering, this world would be a safer place to be human. And a lot of people might not be eager to leave so soon.

Nanu, nanu, Robin Williams. Rest in peace.

A collection on suicide prevention on Beyond Meds: Suicide: Stay, because we need each other

 

leahLeah writes about holistic, community-based approaches to support those experiencing emotional distress and extreme states; storytelling as a vehicle for personal liberation, human rights, and social justice; and connections between creativity, activism, spirituality, and social change.

The post appeared first on Mad In America.

More posts by Leah Harris on Beyond Meds

From Self Care to Collective Caring

By Leah Harris

“Like many survivors, I can isolate myself while engaging in the stereotypes of self-care. I may look brave or even enlightened as I take up yoga or running, write glowing reviews of books on self-acceptance, and channel my emotions into elaborate art projects and self-revealing blog posts. This form of self-care can feel less like liberation and more like solitary confinement. Sometimes what I actually need is someone to show up at my house with take-out, sit there while I pick at my food, stay with me until I’m falling asleep sitting up on the couch, and then send me to bed and tuck the blankets around me. Occasionally that happens without my asking. And sometimes I have to bravely reach out and alert someone that I need to talk, or cry, or most of all just not be alone. There are times when not insisting on taking care of myself is the most radical form of self-care I can practice.” — Self as Other: Reflections on Self-Care *

As a trauma survivor growing up in various adolescent mental health systems, I learned that my current coping skills (self-injury, suicidal behavior, illicit drug use) were unacceptable, but not given any ideas as to what to replace them with. No one seemed to want to know much about the early childhood traumas that were driving these behaviors. Instead, I collected an assortment of diagnoses. I was told that I would be forever dependent on mediated relationships with professionals, and an ever-changing combination of pills. The message was that my troubles were chemical in nature and largely beyond my control. Care would always be something I would have to accept from others, not to perform for myself.

It took many years for me to overthrow that painful legacy, and come to learn that I could take responsibility for my own well-being. After exiting the mental health system at 25, I attempted to “prove my worth” through academic achievement, overwork, and nonstop activism. For a while, that was enough. But in my late twenties, I was headed for a heavy dose of burnout. I couldn’t get out of bed. I was wracked with physical pain and I was deeply depressed. I felt myself heading into a crisis. My coping strategies, while more socially acceptable, were no longer working.

In the depths of my despair, I picked up an audiobook by Thich Nhat Hahn called Creating True Peace. That was what got me onto a path of mindfulness. I threw myself into it, signing up for every retreat and every class. I was on a mission to heal myself, reading every book I could find about meditation and holistic health. I signed up for acupuncture, because thankfully I had insurance and it would cover it. I took my acupuncturist’s advice and changed my diet to be in accordance with my blood type. I was doing all my wellness practices. And I sometimes felt guilty and self-indulgent for needing so very much self-care just to function.

Then I had a baby, and soon thereafter became a single parent. I tried my best to keep up with my self care, but it went out the window when I was faced with the demands of raising a baby all alone, as well as being on the verge of losing my house. Self care became a luxury that I could in no way afford. I was exhorted in books to “meditate for 5 minutes,” but even that felt out of my reach. I had no family nearby to help, and my friends were all themselves single parents just struggling to get through each day. Again, crisis loomed.

I instinctively knew that what I needed was not another self-care practice, but another person. I somehow found the energy to reach out to a friend. She came right over to my house and asked me what I needed in that moment. It was such a relief, to have some practical help, someone in my corner. I fell into the comfort of her supportive presence. She helped me to tend to my immediate needs for sleep and help with childcare, and I was able to move past the crushing emotional distress into a place of being able to function again, parent my kid, and hang on to our home.

Today, the “balance” that we are all supposed to achieve still eludes me. Sometimes I just can’t adjust to what I see in the world around me, no matter what I do. I can’t meditate or chant away the stories that people email to me every day, stories of oppression in systems, or being isolated with their misery and shame. I have come to realize that the best form of self-care for me is to engage in trying to change the way things are. I show up for my young son and give him the love and nurturance he needs. I show up to support the other people in my life, and try to reach out when I am struggling. But I don’t feel at all guilty anymore for sometimes taking less than stellar care of myself. And that feels liberating. I can allow myself to be imperfect.

“The importance of prioritizing reciprocal care becomes even clearer when we understand that our stresses and traumas are a common plight and not individual pathologies. As human animals, we are living in environments that cause emotional and physiological incoherence. While we may not be able to eradicate the systems that imprison us immediately, we stand a far better chance if we don’t get tricked into thinking our struggles or the solutions to them are individual. The more ways we find to act in honesty with each other, whether in sorrow or in excitement, the stronger and more resilient we become—individually and collectively.” –Self as Other: Reflections on Self-Care

The problem with both the illness and the wellness paradigms are that they are deeply rooted in individualism. We learn that the “disease” is rooted in the individual, and the individual is the one who needs to figure out how to function in society. While all along the status quo changes little.

In America, illness and wellness are almost always depoliticized and decontextualized. Depression ceases to be an understandable reaction to our dehumanizing way of life, and instead becomes a brain disease. People of privilege feel guilty for being depressed when they “have it all,” but miss the point that regardless of privilege, none of us are immune to the distress caused by our increasingly isolated and self-centered modes of being. None of us are immune to crushing hopelessness. We ruthlessly hold ourselves to unrealistic expectations to “perform” in a competitive and often soul-crushing world, and sometimes we fail. I believe this is why people who were said to have “had it all” kill themselves in alarming numbers.

In this society, we have a dichotomized response to distress. Suck it up and adjust to what is, or be put somewhere where you will be made to adjust. It is possible to be so focused on individual illness and wellness that we forget the equally important need to work for collective wellness and social justice. In an ideal world, we are taking care of one other, and working together to change the way things are.

For several years, I have been part of a single mothers’ support listserv. This has nothing to do with “mental health,” though many of the moms, myself included, have struggled with deep distress at times. It has to do with reciprocal care. We do everything from sharing words of encouragement in tough times; to sharing childcare; to having clothing swaps; to providing information and community resources; to having community potlucks; to organizing meals during illness or tragedy; to giving dating advice; to lending each other suits for job interviews; to accompanying one another to stressful court hearings; to organizing Moms’ Nights Out (MNOs). We are the village, created out of a common need. This kind of network costs no money, and it’s the hope of what care can truly be.

A liberating notion of care would follow from the understanding that most of us need other people. We need truly safe relationships in our everyday lives where we can be vulnerable and real, and let the masks of “keeping it together” fall away. A redefined notion of care would presuppose that we as individuals are all deeply interconnected. The “burden of healing” would be spread around, rather than placed squarely on each of our individual shoulders. Together, we are stronger than alone.

Survivors have designed hearing voices networks by and for people who struggle to cope with voices and visions, as well as peer support groups for people struggling with suicide and trauma. These are hugely important. But I am envisioning much broader networks of community support than what we currently have now. Student networks on campuses could be a safe place to share resources, skills, and support, and to advocate together to improve the availability of support for all students on campus. Teachers could form support networks to deal with the challenges of being educators in public systems with dwindling resources, and find ways together to meet their own needs, as well as the needs of the children and families they work with. Neighbors could form networks to provide emotional support to one another, while also addressing their practical community issues. All it takes is a few people who want to break down isolation, loneliness, despair, and overwhelm to create openings for mutual aid, mutual support, and culture change. I know there are many pockets of communities like this already scattered around the country, but in so many other places, folks continue to struggle in isolation.

I want people everywhere to have access to the kind of social support and care that doesn’t require a diagnosis or insurance billing code or involve scheduling an appointment six weeks from now. If we knew how much power we, everyday people, had to care with each other, I believe that many of these oppressive systems that are designed to care for us would be unnecessary. We wouldn’t have to resort to them anymore, because we would have collaborated with others to meet our collective and individual needs.

For too long we as a society have outsourced emotional and social care, and it has largely been a disaster. Everyone admits the systems are broken. Our current way of life is not sustainable. It’s time to seriously re-imagine what care means. The future is in our hands.

 * * * * *

* Thanks to Agustina Vidal of The Icarus Project for getting me thinking about this subject of “self-care.”

The post From Self Care to Collective Caring appeared first on Mad In America.

More posts by Leah Harris on Beyond Meds

 

First They Ignore You: Impressions From Today’s Hearing on H.R. 3717 (Murphy’s Bill)

by Leah Harris


First they ignore you,
Then they laugh at you,
Then they fight you,
Then you win.”

—  Mahatma Gandhi

As I walked alone up the stairs to the Rayburn House Office Building this morning to attend the hearing of the Energy and Commerce Subcommittee on Health on H.R. 3717 – the Helping Families in Mental Health Crisis Act – I thought about how I wasn’t truly alone. In spirit with me were all the people who had experienced scary, coercive, and dehumanizing interventions in the name of help. In spirit with me were all the well-intentioned family members who didn’t want to force treatment on their loved ones, but didn’t have access to or know about alternative voluntary, recovery-oriented community resources. In spirit with me was every mental health provider who went into the field hoping to really make a difference in their communities, but became cynical and discouraged in the face of so many broken systems and broken spirits.

These are dark times we find ourselves in. People with mental health histories are being scapegoated as the cause of the complex problem of violence in our nation. This bill signifies one of the most frightening attacks on the civil rights and human dignity of people with mental health challenges that we have seen in three decades, of that there is no doubt. I won’t give a detailed report of the hearing itself; I won’t go into detail about how Representative Murphy viciously bullied and attacked the people whose views were different from his; you can experience it for yourself here. What I would like to do is to share some impressions, and some reasons for us to be hopeful in this challenging time.

As one can tell by reading the witness testimony and watching the proceedings, the hearing today closely mirrored the impassioned national debate that is currently raging about one of the most contentious issues in health care: the use of coercive interventions in mental health treatment.

For decades, the recipients of forced treatment have been largely ignored in the various public debates about us. We have cried (often into the wilderness) that force is wrong, that it hurts people, and that it is a violation of civil and human rights. But rarely has concern about the use of force occupied the national stage in the way that it does today. (Perhaps we have Murphy to thank for that.)

To me, this is a hopeful development. It shows that we are slowly chipping away at the what I call the “anosognosic fallacy:” the very scientific-sounding, yet unsupported idea that some people “lack insight into their illness;” that a small handful of these people may possibly in the future be a threat to public safety; and thus, they must receive court-ordered treatment “for their own good.” The fact that several Congresspersons could articulate that the bill’s provisions around force were troubling represents a major victory of our civil/human rights and advocacy movements.

Representative Murphy and others at the hearing talked about the tragic situation we find today, where people with mental health challenges are warehoused in jails or wandering the streets alone. But the people who ended up in these horrible conditions did not simply arrive there overnight. Somewhere along the line, they were let down. De-institutionalization policies are typically blamed for this, but as we know they are not the only cause. People in every community in our country are let down every day by exposure to poverty, racism, sexism, homophobia, trans-phobia, homelessness, and violence; by patterns of abuse in their families due to unhealed intergenerational trauma; by accessing terrible treatment they were not likely to want to re-experience; by not being able to access any support at all; or by being discriminated against and treated as “less-than” because they had a trauma history or a psychiatric diagnosis. It is tempting, and convenient, to slap a forced-treatment band-aid onto the festering wound of these intersecting oppressions. But beneath, the wound will still continue to seethe.

My heart went out to the witness from the National Alliance on Mental Illness (NAMI) who described her mother’s tortured descent into madness. The witness arrived at the conclusion that forced treatment could have saved her mother. I have seen this horror with my very own mother, who was compelled to seek treatment for her voices and visions, but found it destroyed her body and soul. I came up to this woman after the meeting and introduced myself, daughter to daughter. I told her my story and said,  “you know, we are not so different, though we are on opposite sides of the fence on this bill. We both saw our parents destroyed. You feel your mother was destroyed by lack of access to services, and I know that coercive systems of care played a significant role in my mother’s death. Can we agree that force isn’t the answer?” To my surprise, she agreed that what we should really be focusing on are expanding options for support for all people. And here is an example of how we can find common ground for collaboration amidst the extremists who call for forced treatment in mental health as the answer to our pressing social problems.

Let’s face it: we probably aren’t going to change the minds of the Tim Murphys of this world. He is determined to discredit the expertise of anyone who does not possess an M.D.

Murphy’s demonization of the Alternatives Conference, a vibrant federally-funded gathering of people who once met the criteria for serious mental illness but have found recovery and vital meaning in helping others to recover, signifies that we are, as Dr. Daniel B. Fisher pointed out here, at the “fighting” stage of the four-step process of social change articulated by Gandhi above. Which, as we all know, is followed by the winning stage.

But we have to do a better job of reaching the hearts and minds of Americans. The fact that the Tim Murphys of the world can dismiss the movement of persons with lived experience of mental health challenges as a bunch of fringe crackpots who want to prevent people and families in crisis from getting support, is evidence of a major communication failure on our part. For too long, we who have been traumatized by abusive families and/or abusive systems have shrunk from fully engaging with families and providers. We talk amongst ourselves about what is wrong, and we are right. But we can’t win this fight alone.

Let’s each of us spend some time winning over some hearts and minds. Let’s talk to people we don’t usually talk to. Let’s engage, engage, engage with our legislators. Let’s engage with all media. Let’s share our human stories with them. What we have on our side is hope in a hopeless time, creativity in a narrow-minded age. Let’s share our hopeful stories about how we regained our lives after our descents into hell. Let’s keep sharing stories about the gifts we have to offer to this world: real, community-based alternatives to force and coercion. Ways that we can really support families in crisis. Voluntary crisis supports such as peer-run crisis respites. Innovative approaches for persons with experiences of psychosis like the Hearing Voices groups, Open Dialogue, or the in-home supports offered by the Family Care Foundation in Sweden. People with experiences of suicide supporting one another to live another day. But these amazing innovations are accessible to so few. We need to be a vital part of creating hope-based policies to create hope-based supports everywhere for struggling families and their communities.

There is no doubt: we are winning. But we can win faster if we cultivate more allies. Family members are not the enemy. Even the dreaded “mental health systems” are not the enemy. Ignorance and fear are our true enemies. These are what drive “shockingly regressive” legislation like H.R. 3717. Ignorance and fear drive force, discrimination, and destructive attitudes towards people with psychiatric histories. Persons with lived experience and our allies can do much to defeat these enemies by sharing our stories, sharing what we have to offer, and building the relationships with “the other side” that will make all the difference in this fight.

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A contribution by Leah Harris. First published at Mad in America.


leahLeah writes about holistic, community-based approaches to support those experiencing emotional distress and extreme states; storytelling as a vehicle for personal liberation, human rights, and social justice; and connections between creativity, activism, spirituality, and social change. 

 

More by Leah Harris on Beyond Meds:

Six Ways You Can Really Help Prevent Suicide

by Leah Harris

I tried to kill myself when I was 14. It wasn’t the first time. My psychiatrist had just upped my Prozac, a whole lot of unresolved early childhood trauma had flared up at puberty, and the baseline sadness and confusion I felt mushroomed into an overwhelming desire to die. The thoughts wouldn’t leave me alone: Everything I could think of circled back only to suicide. I wrote out a suicide note and made an attempt.  I won’t go into the horrors of waking up alive in an emergency room where the staff was clearly annoyed they had to deal with me and my “attention seeking” behavior. (I have written about this elsewhere.)

I won’t go into the indignity of being involuntarily locked up, time after time, until I satisfactorily convinced the staff that I wouldn’t harm myself or attempt suicide again. (I was lying.) The system taught me to lie, to hide my suicidal feelings in order to escape yet another round of dehumanizing lock-ups and “treatments.” I can safely say that not once did I feel seen or heard in the various settings I was committed to over the years. Generally, I felt more like an object to be diagnosed, dosed, and kept alive against my will.

My champions generally came from outside the mental health system. Mr. Harris (no relation), my high school Honors Comp teacher, came to visit me in the psych ward after an attempt. I was embarrassed to let him see me like that, but I was also secretly happy he showed up. He didn’t see me through the lens of diagnosis or deficit or as a “suicidal patient.” He saw me as a gifted writer, and encouraged me to keep writing. Mr. Harris literally shined the very first light that helped me to journey out of suicide and back to life. (Believe that you, one human being, can make that much of a difference in someone’s life. He did, with no special “training” or “expertise.”) When I was 25 years old, I made the decision to be “out” as a person with a psychiatric history and past suicide attempts, and entered the world of mental health activism/advocacy. My first real job in the field was in 2008 with a small suicide prevention non-profit. I was hired specifically for my lived experience; but everywhere I went, the only voices that seemed to matter were those of the MDs, the PhDs, or the “suicide survivors,” family members who had lost loved ones to suicide. While these voices are certainly important and we owe much to the grassroots suicide survivor movement for raising awareness about suicide, I wondered why there didn’t seem to be any interest in hearing the perspectives of people like me, who had survived suicide attempts. I resigned from my suicide prevention gig after eight months, not because I believed people’s hearts were not in the right place but because I instinctively felt the prevailing approach was inadvertently making the problem worse. I also couldn’t continue to do grants stewardship for one of their funders, Eli Lilly, whose drugs had caused myself and others to be more suicidal.

I was troubled by the master narrative of suicide prevention, which is all about “promoting help-seeking behaviors,” ostensibly for some underlying, untreated mental health condition. Okay, so let’s say someone heeds the suicide prevention call and gets into treatment. What kind of help will they receive? Likely, a diagnosis, some pills that they may or may not be told they need to take for life, and a discharge. Furthermore, at least one study indicates that “the risk of suicide is higher during the period immediately following discharge from inpatient psychiatric care than at any other time in a service user’s life.” I would argue that this is not only due to lack of follow-up upon discharge, as the study asserts; it is also because most mental health care systems and providers don’t know much about promoting hope and well-being after a suicide attempt. Suicidology experts concede that the training most mental health professionals receive regarding suicide is “woefully inadequate.”

Source: Dr. Thomas Insel, PowerPoint Presentation, NIMH Alliance for Research Progress, February 7, 2014.

Source: Dr. Thomas Insel, PowerPoint Presentation, NIMH Alliance for Research Progress, February 7, 2014.

What I have noticed about suicide prevention is that despite all the brains, money, and good intentions being poured into it, it doesn’t seem to be working. I recently attended a research progress meeting at the National Institute of Mental Health, where NIMH director Dr. Thomas Insel shared some very disturbing trends. He showed a chart comparing mortality from stroke, heart disease, AIDS, and leukemia from 1990 to 2010. In every single case, there have been noticeable, impressive decreases in mortality over this time period. Most striking is that AIDS, which was once an almost-certain death sentence, is now seen as a “Chronic Manageable Disease.” The decrease in mortality stops when we come to rates of suicide, which remain largely unchanged over the very same time period. Why isn’t the suicide rate going down?

Here in the United States we spend more per capita but have overall poorer health outcomes compared to other similarly wealthy nations. As Robert Whitaker argued in Anatomy of an Epidemic, more and more people are being permanently disabled by mental health conditions – at an alarming rate. Mental health/substance use issues (especially depression, anxiety, and other conditions) are among the leading contributors to chronic disability in the United States, according to a 2013 JAMA study. Consider the Global Burden of Disease Study 2010, which is the largest study of its kind looking at mental health and substance use worldwide from 1990 to 2010. Since 1990, the “global burden of disease” attributable to mental health conditions and substance use, as measured by the number of Disability Adjusted Life Years (DALYs), rose 36 percent worldwide. The studies’ authors attribute this rising “global burden” to age and population growth. Now, I’m no public health expert, but these results do beg the question: Why aren’t people getting better when it comes to mental health-related conditions? Robert Whitaker has much to say about this, including the dominance of the medical model approach and the indiscriminate and often irresponsible over-prescribing of psychiatric drugsRemember that people diagnosed with severe mental health issues die, on average, 25 years younger than the general population.

These statistics suggest something is fundamentally wrong when it comes to our national and global approach to suicide. What has been missing from the suicide prevention puzzle? The voices of people who have intimately known what it feels like to want to die. Even today, if you took a straw poll of suicidologists to see if there is value in our voices and perspectives, I believe that few would see it. Ironically, this perspective is at odds with the views of Dr. Edwin Shneidman, largely considered to be the founder of suicidology, who viewed the perspectives of people with lived experience of suicide as critically important. He wrote in The Suicidal Mind (1996): “the keys to understanding suicide are made of plain language…the ordinary everyday words that are found in the verbatim reports of beleaguered suicidal minds.” You would never know this to attend today’s suicidology meetings, which are much more concerned with studying statistics about people who have completed suicide, rather than talking to those of us who are still alive. David Webb, author ofThinking about Suicide, defines suicidology’s current prejudices against the first-person voice of survivors as “scientism,” or the belief that only the third-person, or scientific/medical, narrative is what matters. It is this very scientism that the suicide attempt survivor must challenge head-on.

I myself was at first very reluctant to engage with a field that didn’t seem to value my perspective, as it caused me to re-experience traumatic memories of being silenced and suppressed by mental health professionals in the past. But the good news is that the dominance of scientism in the suicide prevention world is slowly eroding. For years, people like Eduardo Vega, Heidi Bryan, Mark Davis and DeQuincy Lezine have been lone voices trying to get the entire suicide prevention field to see the importance of the attempt survivor perspective. In large part due to their hard work, and allies andchampions within the American Association of Suicidology, it looks like a new Suicide Attempt Survivor Division of AAS is on the verge of becoming a reality. My hope is that the voices of suicide attempt survivors will not only be taken seriously within AAS, but that their “lived expertise” will come to drive all research, policy, health care priorities and community responses to suicide. In the last few years, there are a growing number of suicide attempt survivors who are willing to speak out and challenge the status quo. Live Through This, created by Dese’Rae Stage, features the images and stories of people who have attempted suicide. The American Association of Suicidology has launched a blog, run by journalist Cara Anna, which features over 60 distinct voices of people with lived experience of attempting suicide. I don’t agree with every perspective I read on that website, but it is exciting to me that so many people are now willing to publicly break down the taboos around being “out” as a person who has struggled with suicidal feelings and attempts. Like the HIV/AIDS movement in the 1980s and 1990s we are a highly stigmatized group; but I also believe that, like the HIV/AIDS movement, we have the power to change attitudes and demand change with our advocacy voices.

The most heartening development for me was a recent historic summit sponsored by the National Action Alliance for Suicide Prevention, which sought to bring together its Suicide Attempt Survivors Task Force, as well as members from its Clinical Care and Intervention Task Force, launching a newZero Suicide initiative. (Click here and here for some reports on the event, from an attempt survivor and clinician perspective, respectively.) For the first time, I was able to sit in a room with clinicians and feel that my voice was not only heard but valued and respected. I was able to say things that I didn’t feel safe saying if I wanted to keep my suicide prevention job in 1998. I was able to say that “safety” in the context of my treatment was always a euphemism for coercion, and that well-intentioned efforts to keep me “safe” caused only more harm and trauma. Cara Anna said that “treatment should never feel like punishment” and I emphasized that “forced treatment has no place when it comes to mental health or suicide.” Melodee Jarvis talked about “celebrating our stories of survival.” Tom Kelly said, “I’m a person. I’m not a lost cause.” These are sentiments and concerns that have heretofore not been uttered in mainstream suicide prevention meetings. We have a long way to go to see a grassroots movement of suicide attempt survivors that will be able to influence the way suicide is understood and responded to on a national and global scale, but this dialogue was an encouraging beginning.

What Can You Do?
Tell Your Story. If you are a suicide attempt survivor, or someone who lives with suicidal feelings, I encourage you to “come out–” if and only if you feel ready. Write a blog post; create a video; send a selfie to #todayistandup on Instagram; do whatever you can to break down the scary walls of silence and shame around this issue. Share what system and social responses hurt you and added to your suicidal burden; tell us what gives you hope; and explain how you cope and stay alive in an often-hostile world. Tell us about the relationships that helped bring you back to life. We need your wisdom and your vision. The more of us who speak out, the more power we will have to end discrimination and effect the radical changes we want to see in how suicidal people are treated. Our voices are needed everywhere to shift the perspective from a narrow medical model, deficit-based approach, to a holistic, strengths-based, community-wide suicide response.

Join sasurvivors@googlegroups.com, the international Suicide Attempt Survivor discussion list. I started this list several months ago to promote respectful dialogue among suicide attempt survivors, to get politically organized, and to share resources and information. Lots of great ideas are being generated there, such as the need for an independent advocacy network of suicide attempt survivors (which is coming soon!) as well the need for a national survivor-run 24/7 chat/text service to support people experiencing thoughts of suicide. We need your energy and support to bring these and other hopeful ideas to fruition.

Join the #SPSM (suicide prevention social media) chats on Twitter. I have participated in a few of these, and it’s a great way to influence the conversations and bring a lived experience perspective. People on Twitter constantly bemoan the lack of survivor and advocate voices in these conversations, so please get on Twitter for some respectful dialogue and to share your ideas. Find me tweeting about suicide and well-being @leahida, and follow @beyondmeds, @aboutsuicide, @unsuicide, and @lttphoto for a start.

Learn How to Be an Ally/Practice eCPR. I recently had the pleasure of co-presenting (with Will Hall) a workshop on a public education campaign we are developing called “Emotional CPR for People with Suicidal Feelings” at the Tools for Change conference in San Francisco (#tfc2014). In the workshop, we talked about why current, fear-based responses to suicide only drive the problem, and how we can all practice responding from a place of hope and belief that healing is possible. People told us that they appreciated eCPR’s use of role plays, which we used to contrast the typical fear-and-liability-based response with examples of open-hearted, curious responses that honor the person’s profound pain with respect and dignity.

Make a commitment to be a part of the solution. For too long, we have been told that community members must leave it up to the professionals to deal with suicide. As a result, we as a society are “illiterate” when it comes to suicide. Not only do we not know the signs, we generally have no idea how to respond in a way that’s actually helpful. But we can and should each be prepared to play an important role in supporting someone through a suicidal crisis. If we truly want to make change, we can’t leave it solely up to the police or the clinicians (who, as we saw earlier, mostly do not have a clue as to how to respond to suicide). We must all learn how to listen and how to truly connect (the “C” in Emotional CPR). We must learn to honor the suicidal experience as a deeply human problem, a universal problem, a “crisis of the self,” as David Webb so eloquently puts it, and to do much better than a severely limited medical model that locates suicide in faulty biology or genes. Understanding suicide as a medical issue/biological disorder only breeds the current state of fear, misunderstanding and discrimination. Understanding suicide as a human struggle is naturally de-stigmatizing and generates authentic compassion.

Create Safe Community Spaces. For too long we have been told that we cannot speak openly about suicide, that we will somehow spread it via “contagion.” That advice demonstrates complete ignorance. We must create truly safe spaces everywhere, where people can speak honestly about suicide without fear of coercive interventions. We can all be a Mr. Harris and go beyond the approach of simply preventing someone from dying by any means possible (even if it kills them), and instead practice supporting them, in a spirit of respect and collaboration, to find reasons to live. Forget just “preventing” suicide. Together, let’s create real community alternatives!

I believe that by returning to the humanistic roots of suicidology, elevating the first-person experience to its former centrality, and creating safe, culturally respectful spaces to unload our suicidal burdens, we just may have a chance of reversing our global epidemic of suicide and distress.

Submitted by Leah Harris. First published at Mad in America.

leahLeah writes about holistic, community-based approaches to support those experiencing emotional distress and extreme states; storytelling as a vehicle for personal liberation, human rights, and social justice; and connections between creativity, activism, spirituality, and social change. 

 

More by Leah Harris on Beyond Meds:

More alternative perspectives on having suicidal feelings and impulses from Beyond MedsConversations about Suicidal Feelings

Beyond the dirty window — Leah Harris, a powerful mini-documentary

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Leah Harris, psychiatric survivor, mother, and social justice activist tells the story of how she overcame a legacy of oppression to become a part of the global movement working for rights, dignity, and justice for people labeled with mental illness, mad people, and people living with emotional distress.

Parallels in obstetrics and psychiatry – Leah Harris

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It often strikes me as to how my experiences as a psychiatric survivor color most facets of my life, informing my perspectives and my choices in so many ways.

When I became pregnant, I immediately knew that I did not wish to give birth in a hospital setting. Given my past history with involuntary hospitalization and drugging, hospitals are traumatizing places for me and I avoid them at all costs.

Yet, in early pregnancy, I honestly didn’t know of the other options available to me. Even for someone like me, who was already skeptical of mainstream medical approaches, it took a lot of research to uncover the truth about birth. Luckily, there is a growing movement out there of dedicated natural birth activists who seek to educate mothers and families about the birth options available to them. Ina May Gaskin is considered one of the gurus of this movement, which has attracted celebrities like Ricki Lake (who made a great documentary called The Business of Being Born).

As I got deeper into the research about childbirth options, I began to notice the commonalities between the natural birth movement and our movement of users and survivors of psychiatry. The first commonality is that we are confronting industries – the birth/obstetric and psychiatric industries, respectively. In both cases, the trend is toward the most invasive medical technologies, which also just happen to make a lot more money for these industries. When it comes to mental health – as we all know, it’s institutionalization, shock, and expensive psych drugs.

When it comes to birth, the parallel is in unnecessary Cesarean sections. While I do believe that in some cases, c-sections are truly necessary, life-saving procedures, they are performed far too often. The U.S. happens to have one of the highest c-section rates in the world, yet maternal mortality rates have not declined since 1982. Basically how it works is that through a cascade of medical interventions – electronic fetal monitors, epidurals, labor-inducing synthetic hormones like pitocin, etc – many mothers end up with c-sections that could have, in the vast majority of cases, been avoided without the interventions.

On this subject, I highly recommend Suzanne Arms‘ book Immaculate Deception II: Myth, Magic, and Birth, which provides a little-known historical perspective on the birth industry. Among the frightening practices of obstetrics in the 20th century was “twilight sleep” – the administration of a powerful narcotic and drug which would literally knock mothers out to the extent they had no recollection of the birth experience. The use of twilight sleep was common well into the 1970s.

Same story that you may recognize when it comes to mental health: a history of brutal “treatments,” expensive technologies, lots of medical experts, disempowered “patients,” and unimpressive outcomes. Another commonality is that the truth about natural alternatives is suppressed. There is a growing body of evidence, for example, that home birth is as safe, if not safer, than hospital birth, yet this information is not known to the general public. Most childbirth classes are run by hospitals themselves, so parents are not typically exposed to any alternate viewpoints.

By the time I got to the beginning of the third trimester of my pregnancy, and was assured by my midwife that there were no complications, I began to seriously consider having a home birth. I knew that the only place I’d truly feel comfortable giving birth to my baby was at home; and since I knew I didn’t want epidurals or other drugs, there was no reason not to have a home birth. I lived within a 10 minutes’ drive of several hospitals, so if something were to go wrong, I would have that option open to me. Continue reading