“Active Minds”: What Conversation Are We Changing?

I wrote this article as a piece for “Mad in America,” reflecting on some of the most important experiences in my life the past few years.

In the late seventies and early eighties, the formation of what would become “anti-stigma” campaigns began to take shape as organizations came together with the goal of education and advocacy around mental health struggles. During this time, NAMI was founded by two mothers responding to a lack of service for those struggling with intense emotional experiences, which they defined as “mental illness.” It has been almost forty years since these mothers met in Wisconsin and started an organization that would go on to be an effective instrument of big pharmacy, developing alongside other organizations operating on “awareness” and “anti-stigma” campaigns. Around two years ago, one of these modern organizations, a national nonprofit group called Active Minds, came to play a defining role in my life.

This group tackles the various issues surrounding mental health on college campuses. Active Minds was officially founded in 2003, but its roots began in the year 2000 when Brian Malmon, a student at the University of Pennsylvania, completed suicide. His sister, Alison, recognized that extreme emotional experiences were not being discussed on college campuses; she noted that Brian hid his extreme experiences from everyone around him. Determined to start a conversation on mental health, Alison launched the organization.

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Thirteen years later, Active Minds has 440 chapters across college campuses. These chapters operate on the mission of “spreading awareness on mental illness” through education, advocacy, and referral to treatment. They sponsor events such as Send Silence Packing, a suicide awareness event in which backpacks are placed across campuses (an event that very well may be a sensationalizing medium contributing to suicide contagion). They have a Speaker’s Bureau, comprised of fifteen speakers that all have unique experiences in dealing with various struggles. Other events include Eating Disorders Awareness Week, an Emerging Scholars Program, and a National Conference, as well as myriad resources for all chapters.

For two years, I served as president of the Active Minds chapter at Westfield State University, a quaint and homey campus in Western Massachusetts. I had come into contact with the organization when, after years and years of rock-bottom self-esteem, endless self-deprecation and suicidal thoughts on a daily basis, I was introduced to the concept of ‘mental illness.’ According to this model, my consistent sorrow and non-stop uneasiness were due to ‘chemical imbalances’ in my brain. Initially, my diagnoses were extremely validating, as I no longer felt like I was at fault for my extreme emotions.

For the next few years, I cycled through Celexa, Zoloft, Klonopin, and Abilify. The side effects exposed themselves differently, sometimes manifesting as slight nausea that would keep me from eating, and sometimes being unbearable, such as an instance of akathisia so intense that I had to leave class to endure one of my most frightening panic attacks in a bathroom stall. I settled on a 225 milligram extended release Effexor pill for nearly two years, side effects bearable.

I was inspired to finally make my mark in the world. I switched to a Psychology major with the intention of becoming a therapist. I founded Active Minds at Westfield State and ardently advocated on my campus and in the community. I wanted people to know that they were not alone. I felt great pride in building an organization that, in increasing numbers as time passed, addressed struggle in a way that I was never able to outside of a therapist’s office. So many folks seemed to mirror my solace in this medium. These conversations needed to happen.

We had so many open discussions about the struggles that college can entail. Relationships, both platonic and romantic, begin to transform and often grow complicated as we learn more about ourselves. Academics and athletics call for an often unattainable perfection. There are abundant pressures to consume copious amounts of alcohol. Rape culture allows constant sexualization and sexual assault on campuses, with rape as the most under-reported crime in college populations. Food can be an enemy in a world where body image is so stressed and the ideal look is through such a narrow scope. Roommate situations can get horribly messy. The list goes on and on.

As I inched closer to graduation, my Psychology Practicum required an internship. At Westfield State’s health fair, our Active Minds chapter hosted a table close to the Western Mass Recovery Learning Community. Their table grabbed my attention with a striking image of a beat-up boot with flowers in it. I was told that the WMRLC was a community where folks supported one another through mutuality and genuine relationships, with no clinical staff and no assumption of illness. I was welcomed into the community for my internship; it introduced me to so many folks who had been through the mental health system. I had expected a further affirmation of my beliefs, but I was introduced to an entire world of the system that I had not known.

Active Minds states on its website that “treatment is effective and available,” and since I had found parts of the system that had worked for me, I automatically believed this to be true. The first question on the FAQ section of the Active Minds website refers those who need “immediate help” to the National Suicide Hotline and crisis centers. I never experienced such phone calls during my own times of deep distress, but with my internship (and eventual employment) at WMRLC, I was introduced to the consequences of calling these resources.

Forced hospitalization (Section 12 in MA) is often the traumatic result of calling crisis services, which is so frequently the referral given by friends and family in times of distress. This allows folks to be held indefinitely against their will, and the opportunity to exist in a healing environment diminishes after this. One common result is seclusion, in which those in locked units are forced into isolation which has fairly obvious detrimental effects. Restraint also occurs, frequently leading to injury and sometimes death, much of which is unreported. Injury can come in physical, mechanical, or chemical form, the last stemming from medication that does far more harm than good in the long-term. Hospitals are not trauma-sensitive in so many ways, and evidently can be the cause of widespread and lasting emotional pain.

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After learning what accepting the medical model of struggle as illness entailed, I became extremely skeptical. The more I talked to folks who had experienced these very real circumstances, the more I began to reflect on my time with Active Minds. I looked on the website, searching for more details of the exact mission of the organization and the resources that it provided.

There are zero references to the details of the potential results of calling Crisis, or to the abundant horrors of involuntary commitment. There are zero references to medication, suggesting blind trust in a referral process that often causes great pain and harm. The organization claims to run on a mission of spreading awareness, so where are the references to the dangers of antidepressants, benzodiazepines, stabilizers, antipsychotics, and other medications that are a very real part of receiving counseling services, treatment or hospitalization? Do they have no obligation to mention the risks?

How can such a major part of the system be ignored? When I asked Ms. Malmon about this, she avoided the question, stating that “Active Minds does not advertise any specific area of treatment,” even though I only hinted at providing objective resources and alternatives that have been helpful to many folks. So, what gives? Why not speak about some of the most pressing issues within the mental health system that are hurting numerous people on a daily basis?

One possible answer brings us back to where similar organizations and campaigns to decrease the “stigma” of mental illness started. In the 1960s, psychiatry began to lose its merit due to books such as Thomas Szasz’s The Myth of Mental Illness which revealed the bad science behind psychiatric drugs. Szasz observed that while the nebulous science behind the theory of chemical imbalances did not add up, extreme emotional responses to life’s inherent struggles were the root of what is often diagnosed as mental illness. This resulted in the rise of the antipsychiatry movement, unintentionally precipitating swift action from the profitable psychiatric industry in order to save itself.

The American Psychological Association quickly published the DSM-III, adding significant numbers of psychiatric diagnoses that used an arbitrary amount of subjective, often self-reported symptoms to diagnose someone as ill. Loren Mosher’s Soteria project, a house without antipsychotics in which non-clinical staff provided companionship, was defunded as Mosher was ousted from psychiatry. Despite its evident success, it was not within the medical model, and so this alternative method of healing was quelled.

Most relevant to this article, the National Institute of Mental Health (NIMH), caught up within the incestuous relationship between the American Psychological Association and pharmaceutical companies, founded an awareness campaign titled “Depression Recognition, Awareness, and Treatment” (DART). Pharmaceutical companies funded this campaign, providing “educational” resources that the NIMH would run for years. Through this campaign, outside organizations that bought the opaque science behind the medical model were initiated, and organizations that aimed to spread the message began to appear, the first of which was the National Alliance of the Mentally Ill (NAMI) in 1979. The APA teamed up with NAMI, and as a result, NIMH funding rose 84% during the 1980s (these developments are outlined in Robert Whitaker’s book Anatomy of an Epidemic).

Since then, NAMI has received an absolutely astronomical amount of money from the pharmaceutical industry. With pharmacy’s bad science pushed forward by organizations that presumably believed they were engaging in beneficial campaigns, much as I did while president of the Active Minds chapter at my college, the medical model grew more popular than ever.

Since the 1980s, the amount of mental health diagnoses (and ensuing disability numbers) in this country has exponentially skyrocketed. Some argue that this is due to the decrease in stigma over the years; maybe since we are evolving into a more accepting society, the number of those diagnosed are more comfortable talking about their struggles, and the data reflects this? Perhaps, though, the artificial agenda of big pharma precisely planned that this would be the case by funding organizations like NAMI and similar groups.

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Why not reduce the stigma surrounding struggle by moving towards a society that is more accepting of traumatic experiences and extreme emotions, rather than asking people to “own an illness” that does not have scientific validity behind it? The only difference this holds, aside from arbitrary diagnosis, is that pharmaceutical companies are raking in exorbitant profits.

Active Minds is not NAMI. However, the two groups have worked together, as well as with the Jed Foundation, whose founder and CEO is heavily tied to big pharma. Kelly Cox, the Vice Chairwoman of the Active Minds Board of Directors, works for Johnson and Johnson, which absorbed Janssen Pharmaceuticals, known for falsifying their marketing of psych drugs. The Active Minds National Advisory Committee is chalk full of big names from psychiatry, including chairman Steven Lerman, who has donated to the Treatment Advocacy Center, an organization that tirelessly advocates for forced treatment using tactics such as highlighting false statistical relationships between mental health diagnoses and violence. Active Minds has apparently taken money or sponsorships from Eli Lilly and Astrazeneca, pharmaceutical firms that have hidden adverse drug effects through bad data time and time again.

While Active Minds does not haul in money from drug companies the way similar “mental illness advocacy” organizations do, the aforementioned ties to pharmaceutical companies, including an entire framework around medical model language, certainly leave much room for a pecuniary relationship to exponentially grow between the two. Financial ties are already there, so who is to say that Active Minds won’t propel itself into the next NAMI? If there is little attention given to what happens after referral to treatment now, what would it look like then? Would it look more like the Treatment Advocacy Center’s website?

There are so many folks, both within Active Minds leadership and throughout chapters, who want to talk about the broader emotional context and experiences that contribute to so much suffering and struggle in this world. In our weekly meetings at Westfield State, we did discuss diagnoses and ran events that were sponsored by organizations that were heavily tied to big pharma, but our favorite parts really seemed to come from when we simply talked about what was going on in our lives. We did not need to talk about “illness” to do this.

Discussing our times of extreme emotion and what mattered to us the most was not pathologizing; it was humanizing. At the end of each of our meetings, we would talk about the best points of our day. After everyone had left and I packed up my bag, I felt relieved that I had the support and love of those around me. Even Ms. Malmon stated in our conversation that Active Minds members do often become friends through working together, and that it was perfectly okay that chapters took this intimate mold as relationships grew stronger.

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Why do conversations about the difficulties behind the experience of living as a human being always have to turn to the medical model to find validity? Why not take pride in our humanity, extreme sadness and despair included? The medical model is so ingrained in our world that it is often difficult to fully take in this point of view, but at the very least, shouldn’t alternative resources be available? Shouldn’t Active Minds talk about the Hearing Voices Network, Alternatives to Suicide groups, the Icarus Project, and other alternative resources as well as traditional ones? Shouldn’t we know what we are getting into when we are calling Crisis? Shouldn’t we know what our medications might do to us?

Ms. Malmon and the rest of the Active Minds crew may want to look at these resources with rose-tinted lenses, but people who have traveled the rocky paths of Crisis and hospitalization have had their lives turned upside down repeatedly. As we accept the medical model more and more, this will presumably only worsen.

When I was struggling, I was ready to believe anything, and I think this principle applies much more widely than myself — especially for those who have not spent time inside the walls of psychiatric hospitals. Active Minds allows college students to start conversations on some of the most difficult struggles we face in life, but it’s important to realize that the medical model is limited in scope and harms many who seek treatment for these struggles.

I urge the organization to lead the conversation away from bad science and towards the common struggles that we endure as human beings — or, at the very least, to include alternate resources and far more transparent information around psychiatric medications. If they don’t, other groups such as NAMI, ADAA, AFSP and the Jed Foundation, even with handfuls of caring, well-intentioned staff, will not. Psychiatry certainly will not. We have a better chance of growing wings than of pharmaceutical companies stepping up to reveal the long-term harm that their products cause.

So, Active Minds, please: take the next step and change the conversation. The new generations of psychiatrists, therapists, social workers, mental patients, and human beings so desperately need the truth that money has effectively quelled for so, so long.

Always remember that you are not alone,

and that you are loved.

DK

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Friendship, Storytelling, and Mental Health – What I Learned After My Friends Recent Passing

I had a close friend with mental illness who passed away recently.  She always talked about wanting to share her story, but never really had the opportunity to do so.  So I’m hoping to share at least part of her story for her, and in part the story of our friendship.  I met Unique when she was 15, as one of her camp counselors.  Somehow a friendly e-mail after camp turned into 14 years, thousands of hours on the phone, and a long-distance friendship that had more an impact on my life than anything I ever could have imagined.

When I first got to know Unique she was living at home in a very difficult situation and dealing with depression.  In the few years that followed, I watched her deal with worsening depression, her first suicide attempt, multiple psych hospitalizations, and moving into foster care, then a nursing home, and then eventually the first of many group home placements.  For the rest of her life after that, Unique moved into a series of group home placements all over the state.  Because she had a physical disability but didn’t have any cognitive disability, those placements meant that she was usually living with people who were much older than her, and much lower functioning than her, which brought along its own set of challenges.

For the first few years Unique was pretty stable.  She had her ups and downs, but she did the best she could to make a life for herself and make the best of the situation.  Eventually things started to go downhill – the suicidal feelings came back, she had her first psych hospitalization in years, and that started a whole new period of her life.  For the next few years it was a constant cycle of hospitalizations, dozens of them.  At one point she stopped making sense, which turned out to be her first episode of psychosis.  It lasted for a few months, and once she got through it and was more back to “herself” again, she had started to hear voices – constant, incessant voices that were shouting at her all the reasons she needed to kill herself and what a horrible person she was.  She was living in a very rural area at the time, and didn’t really have access to the supports she needed – the staff had no idea how to support her, and the hospitalizations just kept continuing.

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Eating Disorder Awareness Week: An Introduction

The next week will be a very special week for Dear Hope; this week, we will see a featured piece every day relating to a topic: eating disorders. Allow me to explain where the idea originated.

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Last fall, I came across a great organization titled Active Minds. Over a decade ago, a wonderful woman named Alison Malmon began this organization after losing her brother, Brian, to suicide. The conversation on mental health needs to become commonplace, thought Alison. Of course, this is not a quote, but rather one of the driving ideologies behind Active Minds. Its purpose, in abbreviated form, is to embed chapters into college campuses, bring together passionate students with the common goal of raising mental health awareness, decrease stigma, and create more accepting, welcoming environments among a demographic where mental illness is rampant.

I started a chapter at my school, and I have loved everything about it over the last year and a half. I have loved being shown the sides of people that would never have emerged had the conversation not been started. I have loved opening myself up emotionally to something that I have never felt fully comfortable with because such an omnipresent stigma exists.

Dear Hope loves to focus on these goals in many different ways, one of which is through personal narrative. Coping: This is Who We Are is such an incredible series because it gives us living, breathing proof that mental illness is so real that it feels tangible. It shows us the true stories behind our loved ones, our acquaintances, and strangers across the globe. There is so much that the surface does not show. And so, the many driving forces behind awareness and reducing stigma, such as Active Minds or Dear Hope, simply want to make what is under the surface come up and gasp an oxygenated breath of relief, free of any shame.

This week, February 21st-27th, is Active Minds’ National Eating Disorder Awareness Week. The events occurring on campuses across the United States will range from speakers, to narratives, to panels, to screenings, and far into the realms of creative mental health education. As I organized for our week, I thought, why not include Dear Hope?

So, we gathered narratives, poems, and other creative pieces to showcase those who have identified with struggling with some sort of eating disorder. Some are anonymous, some are identified. Some are narratives, while others are creative pieces. Regardless of the format or identity, we wanted to dedicate an entire week to showcase stories of struggle, self-doubt, and healing within this specific area of mental health. Every area of struggle deserves its highlight, and we at Dear Hope  want to spread the message that no matter what you experience, you should never feel marginalized or alone.

This is our test run; we only have room to grow. Four pieces: four stories of mountains and valleys with all of the details beautifully scribed to evoke emotions of empathy and compassion is just a start. 20 million women and 10 million men in the United States alone identify with struggling with an eating disorder, with many more unreported. Let these narratives be a seed to relate to, to expand upon, and to spread the message that you truly are beautiful and good enough just the way you are. Even though eating disorders go far beyond a conscious dislike for one’s self-image or diet, encouragement such as this is an abbreviation of “I validate your struggle, but want to encourage you that the person you are is one of a kind, and thus, amazing.”

So, if these pieces speak to you in any way, spread them. We want to hear narratives of more women who have struggled with the concepts of skinny, societal expectations, and self-image. We want to hear stories of those who have suffered from bulimia and other binging/purging experiences. We want to hear from men who have struggled with a category of mental illness that is constantly pounded with the societal hammer of masculine expectations to have muscles and be tough. We want to hear your stories of using food as a coping mechanism and overeating. The list goes on.

To wrap things up, my point is that while these four profound, insightful, and wonderful stories have infinite potential for impact and empathy, they are only a snippet of the experience behind food, body image, and mental health. A journey of a thousand miles begins with a few impactful steps that leave permanent prints in the ground, in this case at least.

Tomorrow you will see some background information on eating disorders. What are they? How do you know when restricting, overeating, or looking in the mirror becomes unhealthy? This information is vital in understanding the symptoms that serve as a baseline, in some way or another, to these stories.  The following four days, we will share these stories with you. As always, feel free to always ask questions, provide support, give feedback, or build upon anything that is discussed this week.

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Remember, you are not alone.

And you are loved.

-DK


This post is a part of our Eating Disorder Awareness Week. Find the other posts here:

An Introduction To Eating Disorder WeekWhat are Eating Disorders?He Called Me the “T” Word”  – An Empty Home & An Empty Stomach: My Lifelong Struggle With Eating Disorders – The Fine Print Doubt: Sarah’s Poem – A Journal on the Imperfections of Perfection – Nervosa


Source(s): https://www.nationaleatingdisorders.org/get-facts-eating-disorders

Note: If you want to read more about Active Minds or Alison, please follow this link: http://www.activeminds.org/index.php . I’ve naturally abbreviated all of the wonderful work that they do, so if you’re interested, I encourage you all to check it out 🙂

Want to submit to this site and share your story, art, or article related to mental health or mental illness? Email wemustbebroken@gmail.com

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