“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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“The Violent Ward” – Coping: This is Who We Are Entry 22

By: Leif Gregersen

He had me firmly by the left arm and was twisting it.  It hurt bad, and he was going to take me back there again, to ‘the room.’

“Wade, you don’t need to force me, I’m not resisting you.”

Wade was a good looking guy with shoulder length brown hair and a neatly shaved face with a well kept moustache.  He twisted my arm more as he walked me to the isolation room and looked down at it.  I looked at his face again, and I could see him smiling, trying not to laugh at the fact that his actions were severely hurting me to the point of injury.  He had to be a closet psychopath.  Me, I was only psychotic.

Wade brought me to the side room, shoved me inside and slammed the door.  I could hear the metallic click of the magnetic lock that only opened from the outside.  I was back, and I hated the feel of the white painted walls, the hard floor with the interrupted pattern of small tiles on it that seemed to put messages in my head.  Most of all I hated that nothing I could do would get me out of there before someone on the other side of that door felt like opening it.

I had so much anger, so much pain inside me that when the staff put me in the side room, I would cut loose.  I screamed a string of profanities as loud as I could, and let go as many hard kicks to the door as humanly possible.  I did this until I was hoarse and my shoeless feet ached.  I don’t know what I was accomplishing, but it helped me calm down, and the staff never seemed to be able to give me trouble for it, so I kept doing it.

The room was small, maybe 12 feet by 12.  There was nothing in it, no TV, no padding, no window.  My only companion was the air conditioning unit in the corner built into the wall.  It hummed out a throaty, low sounding waft of cold air for a few minutes every hour.  Still, the air seemed pretty stale in there.  It was institutional air, a lot of other people had breathed it in an out before me and I would likely breathe the same air in again in the near future.

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All I had in that room was a bottle to piss in, a plastic mattress and what they called a strong sheet.  There was no way to hang yourself or injure yourself in any way unless you got creative like I had done, and you kicked at the thick metal door until you felt like your foot would break.  I saw people pick at the linoleum if they were motivated to find a way and take a little piece of the stuff to try and cut their wrists.  It rarely worked.

I had arrived on that ward about five months ago.  I had been living alone, and it seemed like everything was going right for me.  I had credit cards, I took trips, I had a car and led an active life. For some inexplicable reason, I decided that I could lower my medications—not a lot, just a little.  It was a mistake that nearly cost me my life.  At the very least it cost me the next six months of my life that I spent in that horrible place.

My psychiatrist seemed to have no interest in helping me.  I had gotten sick of the doctor’s inaction and the fact that he never talked to me, and I ended up telling the nurses and other staff members that he was incompetent.  They laughed and told me to tell him that.  Little did they know I was just crazy enough to do so.

“You’re incompetent, and I want a different doctor,” I said.

“Get out.” He said in reply.

That was it.  ‘get out.’  The next weeks and months went by so slowly I could hardly stand it.  I didn’t get a new doctor or any help from the old one.  Once he came by to tell me that I would be put in jail if I kept making phone calls to people.  I had called a former girlfriend’s dad one time to ask him a couple of questions, and he had gone ballistic.  No one took into account that I made no threats or insults, and I was severely mentally ill at the time.

My doctor had left instructions that at the first sign of any problems they could put me in the side room without hesitation.  There was no judge and jury process, no need to contact a supervisor, they just had to gang up and throw me in, with or without injecting me with something ominous, and they could leave me in there as long as they wanted.  Over the next five months, I must have been in that room more than a hundred full 24-hour stays.  I tried everything to get back at them for this injustice.  They had set things up so even the ward receptionist could have me put in the side room for absolutely no reason.  One time I filled the piss bottle and then tossed it under the door frame.  Another time I took my mattress and tipped it against the wall and hid behind it making them have to come in and take it away from me.  I like to think that my spirit couldn’t be defeated, that I had a will that would outlast those bastards, but it didn’t work out that way.  I turned into a simpering wreck in the long, tedious, painful and arduous months.  I even made a phone call to the Canadian Special Intelligence Service thinking they had been torturing me for information.  What they didn’t sweat out of me they tranquilized out of me with a long list of medications.

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Then one day my doctor took a short vacation.  I got a chance to see the Psychiatrist, and he had me immediately taken to a ward that didn’t even have a side room.  After all that waiting, all those ‘side room’ visits, I was put back on the medication that I was taking before my hospital stay—but now at the proper dose.  I got better within a month, good enough to walk right out of that place.

The next months on the outside were rough.  I went to a group home run by a penny pinching, self-serving, uncaring old wretch of a woman.  She did things like serve us one potato with watery gravy for supper and took 90% of our disability benefits each month.  One day her sister came over and caused a leak with her washing machine, and she came to me and screamed in my face.  My roommate convinced me that was assault and that I should call the police.  I did, and the cop went right to her, listened to a small web of lies and then came down to threaten me with being taken back to the hospital.  It makes me so angry to think of not being able to say my side of an issue because an oversized moron who is too lazy to do his job has a gun and a taser and will use them.

My life was a mess when I left that hospital.  I never thought I would work again, never thought I would travel or do the myriad of things my heart longed to do when I was younger.  But I found a home.  I found a group home that gave me regular medications, someone to talk with and a comfortable bed.  A group home where everyone dealt with mental health issues as either sufferers or caregivers, and suddenly the stigma of my mental condition was gone, and I could heal.  That was 15 years ago.  The whole world changed since the time I was in the hospital for six months.  There have been wars and stock market crashes, oil booms and opportunities of every kind.  This Spring I made a lifelong dream come true of traveling to London, England and was in awe of the history and traditions.  Five years ago I published a book about my life with bipolar disorder and two years later a sequel.  Life has become a thousand times more incredible than I ever thought it could, and as I finish writing this short essay I wonder how many of those people in that hospital did care, really did want me to get better.  I know I could have been a much easier patient to deal with and that I was pretty bull-headed.  What would anyone do when someone took their freedom away?  How would a person without an illness react when treated so unfairly?  But I also thank the stars that a place like that mental hospital, for lack of a better term, exists that can take someone in when they are seemingly beyond all help.  It may not be a pleasant thing to be drugged and warehoused, but now that I’ve come out the other side I feel stronger for it, and now have a whole new understanding of my loved ones and friends.  Every opportunity I never thought I could have had has come my way.  I don’t know if there is a way to end all pain, but I do know faith in yourself and hard work towards a worthwhile goal can change bad luck into consistent positive results, and bring meaning to any life.

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This incredibly brave and moving piece comes our friend, Leif Gregersen. You can read more of Leif’s work based on his experiences with mental health here, or you can find his mental health memoirs on Amazon: Inching Back to Sane and Through the Withering Storm. Thank you, Leif, for sharing your story with us.

Always know that you are not alone.

You are always loved.

AC

Want to submit to Dear Hope and share your story, art, or article related to mental health? Email us at wemustbebroken@gmail.com.

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Coping: This Is Who We Are dear hope