Today we are continuing with our look behind the scenes of Mad in America for our 200th podcast. Mad in America got started in January 2012 and so to celebrate a decade of critical comment and appraisal we thought it would be interesting to reflect on Mad in America’s mission and work by speaking to the people behind the scenes, who keep it running day-to-day.
Before we move on to our interviews, I want to pay tribute to the people at MIA who couldn’t join us for these interviews for one reason or another. Susannah Senerchia is our Assistant Editor and amongst other things, manages our Around the Web section. She is always finding interesting articles from the corners of the internet that help to tell of a shift in thinking about mental health. Also, of course, Mad in America relies heavily on the science news team as we discussed in part one of this podcast and for overview, we have our Board consisting of Robert Whitaker, Kermit Cole, Louisa Putnam, Olga Runciman and Claudia Esteve.
So, on to our interviews and later we will hear from science writer and blogs editor, Peter Simons, personal stories editor, Emmeline Mead, community moderator, Steve McCrea, and family resources editor, Miranda Spencer.
First, we hear from coordinator of our continuing education webinars, Carina Ruggiero. Carina tells of her journey off anti-anxiety medication (SSRIs) and finding Mad in America and how we are reinvigorating our continuing education efforts.
The transcript below has been edited for length and clarity. Listen to the audio of the interview here.
James Moore: Thank you so much for joining me today for this 200th episode of the Mad in America podcast. I wanted to start by asking about you and your journey. What was it in your life that brought you to Mad in America?
Carina Ruggiero: Thanks for having me, James. The background to my story started when I was a kid, from about the ages of 9 to 13. I had several deaths in my family and friends circle; then my mother got brain cancer. During this time, I was experiencing panic attacks and nobody knew what they were. It seemed like a medical problem. Now the term panic attack is ubiquitous, but at the time, it was rare to know what was happening.
So I was going to the doctor and doing all these tests. In the end, they diagnosed me with a panic disorder. Unfortunately, they told me that this was a chemical imbalance in my brain, which we all know now is not true and it’s very disempowering. So, I’m this 13-year-old girl that gets diagnosed with a chemical imbalance. They tell me the fix is to take a pill to correct the chemical imbalance and so that’s what I did.
I went on to live a very “normal life.” I had a career, friends, marriage, all that good stuff. But something always felt not right to me. I ended up staying on this medication for 22 years .. . I always felt like I didn’t need it, so I would just try to get off it. I’d taper off as the doctor said, but I would go into withdrawal every time. The unfortunate part about that was that I didn’t know it was withdrawal.
Then I would go to the doctor and they would tell me that I needed the medication so I stayed on for 22 years. About 17 years ago, I started meditating because I was searching and feeling like something just wasn’t right for me. I started to go on this kind of soul search. I went off and on that path for a long time. I would go through periods where I’d meditate and do yoga and all this stuff and I gained a lot from it.
But in the last few years, I started to get deep into it and I had some very profound, spiritual experiences. I knew that the greatest thing that I wanted to do was get off this medication. I just hated being dependent on it. When I was trying to get off before, I had searched and searched and searched for stories of people who had been on long-term and gotten off. I could never find success stories. They were really hard to find.
Anyway, back to this spiritual experience. From my soul, I made a decision and it’s probably one of the most powerful decisions, if not the most powerful, that I ever made. I decided that I do not care if no one else on this earth has gotten off of this, I am going to do it.
Surprisingly, after that, I found a lot of stories and information that I needed and so I found people who had it much worse than me, who had come out triumphantly on the other side. People like Laura Delano, Will Hall, Baylissa Frederick, Michael Priebe, Ali Zeck and Greer Adams. There were all these amazing stories and I learned about withdrawal. I thought, okay, now I know what’s going on. I’m getting off this medication, I’ll probably have to go through some withdrawal, but it’ll be okay because I know what it is.
I tapered off over a six-month period, which now I know is way too fast for anybody listening. I went into a severe and protracted withdrawal that I was not prepared for. But I did it and now I’m on the other side, and I will just say that the other side is so beautiful, so much fuller and I’m so much happier than I ever was on the medication. I know myself so much better.
For anybody going through withdrawal right now, it is hell on earth. It is horrific. I don’t even have words to describe the experience. But I just want to reassure you that I believe that everybody heals. Some people get off easy, they don’t even go through withdrawal. Sometimes it takes years, sometimes it’s in between. But I do believe everybody heals. There’s so much beauty on the other side.
Moore: Thank you for sharing that, Carina. What an incredibly frightening experience for a young girl to have at 13. To see illness within the family and then to be made to believe by doctors that it was something wrong with you on top. That must have been such a confusing mix of emotions for you.
But to get off the drugs after 22 years, I don’t think many people out there who haven’t experienced it themselves know the challenge that that presents. I’m so glad that you made it through that period.
Ruggiero: Thank you so much, James. I feel very lucky to have done that.
Moore: Could you tell us about the kinds of things that you do with Mad in America?
Ruggiero: My background is in business operations and I do various operational, admin, and HR pieces. But the main thing I focus on at Mad in America is our live online events and our continuing education efforts. I do those in partnership with Kermit Cole, who is one of our founding board members and he’s also our new director of continuing education.
I think the best way to describe it is in two categories. We have our continuing education program and that was developed before my time as a way to get some of the science around mental health that is not so well known out to the public. The target audience for continuing education is professional groups and mental health professionals, although we also have a lot of survivors and members of the general public that use these courses as well.
There is so much science that is not yet used in the healthcare system and there is also a public narrative that does not match up with the science. The continuing education program was meant to get more of this information out.
We’ll have various leading practitioners, researchers, professors, and mental health professionals present on various topics. These events support our mission to discuss a shift in the current paradigm of mental health care because right now it’s so focused on medicating and especially medicating for the long term.
So we have that. And then we also do online events, which sometimes we refer to as town halls, and those are more community and discussion-based, often with live panels. Sometimes we’ll do a film screening or talk about different initiatives.
We aim for one every month or couple of months. We’ll work with the presenters on the format, the questions, the main points. And then I will also do all the coordinating behind the scenes so that the marketing, the logistics, and everything is running smoothly.
James Moore: I’m excited to see the continuing education part of Mad in America get up and running again. I think continuing education is an incredibly powerful tool for stimulating a conversation about change, isn’t it?
Ruggiero: Yes. I think why it’s so important too is because a lot of the continuing education programs are indirectly funded by pharmaceutical companies and so they are very skewed. We really set this up to show a different perspective.
Moore: Given your personal experiences and then discovering Mad in America and other communities, I wondered if you’re thinking about how mental health has changed through those experiences.
Ruggiero: Absolutely. It’s been a whole process, but what I can say at the highest level is that when I was 13, I believed I had a brain dysfunction that needed to be corrected by a medication that I would have to live with my whole life. I went from that to a completely different view now where I don’t believe that anxiety and depression are a chemical imbalance in the brain. I now trust my emotions. Back then I thought, okay I need to manage away all my negative emotions and chase the good ones. Now I have a deep respect for the full spectrum of emotions. I trust them, they have wisdom and they’re pointing me in a certain direction. They are like my inner compass telling me something.
I don’t want to make a blanket statement that medication is never helpful, because I know people who have found it to be helpful, but it is not curing a chemical imbalance. We need to have informed consent and be aware of the risks because it is, in my opinion, very wrong to be putting a child on these medications. I went essentially from this model of dysfunction to something much more empowering.
Moore: When we were talking before this interview, you mentioned that attending an organized retreat had been important in your recovery. Is that something we can talk about?
Ruggiero: I love talking about this because it changed my life. The retreat is called Path of Love. I participated in it twice and I just got back from working at it. It is amazing, I don’t even have words for it, but it was so key in my healing journey. I have never experienced so much powerful love in one place. There are so many people there that are searching for something. A lot of them have been through really traumatic experiences. Some are just not happy with the way their life is going. They are just looking for deeper meaning in their life.
It’s a seven day process you go through but it’s not in-your-head talk therapy. You’re doing a lot of the processing through your body. There are trained therapists there that will be asking what you feel in your body and what kind of emotions are you feeling. You’ll role-play and physically act out things. It’s amazing to watch because a lot of people will have physical releases where their body will start trembling, they’ll have muscle spasms, all these things. Just having worked there watching the people walk in at the beginning and at the end of the seven days, the change is phenomenal. The way the person looks is different. Their body, the way they hold themselves, their voice, everything is changed. It’s almost unbelievable.
Moore: Thank you so much for sharing that, Carina. I think the power of communities is perhaps one of the most important things in so many people’s recoveries. I like to think that Mad in America for some people does provide that community. I hope that in some way it can help people to come to terms with some pretty horrific experiences and hopefully some healing can come from that.
Ruggiero: I agree. Community is one of the keystones for healing and Mad in America does provide that. I respect so greatly that the organization is about seeking truth and listening to all sides. There’s no cancel culture here. Bob has set the tone to invite all parties in and have discussions, so we can come to some kind of shared understanding. I appreciate that and love working with colleagues like you, James.
Next, we hear from Peter Simons. Peter is our blogs editor and science writer. He talks of his dissatisfaction with the story of settled science that he encountered as a post-graduate psychology student.
Moore: Peter, welcome. Thank you so much for joining me for this 200th episode of the podcast. Could tell us a little bit about yourself and how it was you came to know about and join Mad in America in the first place?
Peter Simons: I came to MIA through an academic and research route. I studied counseling psychology, I have a master’s degree in it and I worked as a therapist trainee for many years. I did three years of a PhD in it and published research in the field. But I just kept running into situations which contradicted the story that we were told.
I went into the field because I believed in it. Then, basically, every situation I was in contradicted the mainstream story about why people are in distress and what psychology and psychiatry can do to help. I was doing a lot of searching for an explanation of why I kept running into these situations that defied the expectations that I had when I went into the field. I think a lot of people only see what matches their expectations.
I have what I think of as my heroic flaw. It’s a failing in that it makes my life a lot more difficult sometimes, but it’s also something that I like about myself, which is that I never stop asking questions. Sometimes that undermines the assumptions that I based my entire life on. This is one of those times where I went into this field to make it my purpose in life, to become a psychologist and help people using the mainstream understanding of psychology. But I couldn’t stop asking questions, and eventually, I asked enough questions that the whole assumption that the field is based on sort of broke open for me.
That’s how I ended up doing a lot of critical psychiatry stuff, particularly in my doctoral program. That led me directly to Mad in America. I read Anatomy of an Epidemic first and it was the first time that I had seen somebody make a coherent argument for anything in psychology and it just happened to be a critical argument. But I had to juxtapose that against all of my classes, which had this extremely surface-level argument, where as soon as you asked a question, the whole thing fell apart.
Then I read Bob’s book and it was an argument where if you asked a question, you got an answer. That was the big step for me was finding any sort of argument that made sense, so that led me to Bob and Mad in America.
My main focus is trying to find that argument. What is the argument that makes sense? And what is the argument where when people ask you a question you have an answer to it? As a researcher and science writer, I am trying to ask those questions, which I think is something that doesn’t happen in journalism for some reason. In science journalism, it’s often just taking at face value whatever is in the abstract of a study, or whatever the researcher about this study tells you. No digging into it at all.
I think a good example of that is I wrote an article recently called the Serotonin Zombie, about this study that purports to bring back the low serotonin hypothesis of depression. But as soon as you read any of their data, it’s just not there. It was appalling to me that this was presented in The Guardian with quotes from the authors as if it’s like this groundbreaking thing that found low serotonin. I always go into this and I think “oh, really, wow, that would be great, please restore my faith in this. Bring me back to like the point where this was my purpose in life and I was going to be a psychologist. If that could happen, that would be great just to have all the answers.”
I looked into the data and they had three hypotheses. One of them was: Do people with depression have low serotonin? The answer was no, there was no difference. Then another hypothesis was: Is it based on the severity of depression. Do people with extremely severe depression have low serotonin? The answer was no again, they did these tests and found it wasn’t true. Then there’s a third hypothesis: What happens if we dose people with this (other) drug–how does their serotonin respond? The data was bad, this is a tiny study where there’s one outlier driving the statistics. But it’s like that’s not even what we care about. Who cares how somebody responds to being dosed with a weird drug? All we care about is do people with depression have low serotonin compared to people without and the study says, “No.” The data says it’s the same.
But it’s reported on as if this is some groundbreaking finding of low serotonin. It’s situations like that, which are appalling to me, that drive me to write about these things for Mad in America. As a doctoral student, I would read these studies and ask “how is that, how are you reporting that?”
Moore: Can you tell us a little bit about your role at Mad in America? You’re a science writer, so can you describe how that process works?
Simons: I came to Mad in America as a science writer initially. I write one science article a week, which is not an opinion piece, but a summary of what a peer-reviewed piece of literature says. The difference between that and science writing that you might see in another publication is that I look at the data first, which is what you’re taught to do in an extremely critical doctoral program. Look at the data, then read the abstract last because the abstract is full of spin. Look at the data, draw your own conclusions, and then go and look at the abstract and their conclusion. How did the authors report this?
I think that’s the big difference between the science writing that we do, and not just me, but all of our science writers have that perspective versus science writing in a less specialized outlet, where the person doing the science writing probably doesn’t have the background to even understand the data. They have to go by the abstract or go by what the researchers are telling them. I enjoy digging into the research data and telling that story.
Then as I’ve worked at Mad in America, my area has broadened so that I’m also the editor for blogs, which bring a different perspective because they are opinion pieces. It expands into what do we do with studies that we see this data coming from. What does that mean for our society, for the culture of therapy, the culture of psychiatry, and the culture of pharmaceutical drugs? How do we reframe our ideology when this is what the data says? I enjoy helping people to tell that story which has a lot more context, I think.
Moore: The blogs are hugely important because that’s where the science meets real-world lived experience. That’s where you can see the impact of good or bad science on people’s lives. Surely that’s the most important thing is not getting published in a journal but is this helping the life of a person in the street?
Simons: Yes, exactly.
Moore: I think we’re tremendously lucky to have you, particularly with your enquiring and questioning mind. Thank you so much for the accessibility that you give to science that might be hard for people to get otherwise.
I wondered in the time that you’ve been involved with MIA has there been a particular piece which has stuck with you? Or a piece that you regularly refer people to, or changed your thinking about things?
Simons: I don’t know if there’s any one specific piece. There was this big article, I think it was in the New England Journal of Medicine, that looked at published and unpublished trials of antidepressants. That’s something I share with people all the time because there’s this idea in the general population that the FDA wouldn’t have approved things if they weren’t shown to be effective, for instance. There’s this trust in government institutions which is a little surprising, but it happens.
This article is a good example of when you look at all of the data, half of the antidepressant trials failed and the other half showed a tiny difference over placebo. It’s not even as if half of them failed and the other half were huge successes either. But that’s the surprise because we only hear about the positive trials. Those are the ones that get published.
It also ties into the way that the FDA makes decisions. It used to be we needed a couple of really good studies showing a positive effect and also it doesn’t matter how many negative studies there are and how many bad effects there are. But at least we needed a couple of good studies first. But now everything is getting approved through a much faster process, which uses proxy outcomes and uses only one study that shows an effect and we’ll use all these other studies that aren’t good RCTs to just provide context that this works. The approval process is getting worse and it wasn’t good to begin with. That’s something that I share with people a lot.
One of the studies I saw early on in my doctoral program was a great example of how the abstract of studies is spun by the researchers. It was a study that compared an antidepressant with St. John’s Wort and a placebo. Three different arms: one of them a placebo, one a natural remedy in St. John’s Wort, and one the antidepressant. The abstract for the study says that they found that St. John’s Wort was not effective, it was the same as a placebo. But then you look it again and they don’t even mention the fact that there was an antidepressant arm. So I thought, I can see an antidepressant arm, yet that’s not reported in the conclusion.
You look at the data, and it says that the antidepressant arm did the worst. It was the antidepressant worst, St. John’s Wort second worst and the placebo did the best. It’s studies like that then don’t even make it into the antidepressant literature because the conclusion doesn’t have anything to do with antidepressants. But the data does. The data shows that the antidepressant was terrible, worse than a placebo.
Moore: Since you’ve been with Mad in America, has your thinking about the whole mental health industry changed, or has it just confirmed the feeling that you had during your studies that things weren’t right?
Simons: I would say it’s confirmed it. I think for me, the sort of aspect that I’ve come to is that I think there’s a reason that psychology and psychiatry exist. People are in distress. No one’s arguing that people aren’t in distress. People want answers, and people want to feel better. I get that and that’s what led me into the field in the first place. And I think that there may even be a space for a version of therapy. But it’s not a science—that’s the problem. I went into it thinking it was going to be a science, and that’s how it’s presented. But the data is just not scientific in any way. What there is, I think, is a philosophy and philosophy can be helpful for people. I think you can make changes in your life because you investigate your own ideology and decide what is meaningful and look for purpose in your life.
I think that if the field of psychological therapy thought of itself as a philosophy more like life coaches than like a scientific or medical field, I think we would all be better off. I think there’s a space for that and I think it can help people. But when you present it as a science, people are going to keep questioning it. When you don’t have the evidence to back it up, it undermines everything that might even be good about the field.
Moore: Peter, thank you. I just want to reiterate how many people out there value the work that you do because you make impenetrable science available and accessible to people. If we’re going to have a societal discussion about where the science fails us, then surely we have to bring people into the tent and your writing does that. Your writing allows people to be part of the conversation.
Simons: Thank you, James.
Now I am handing over to Bob Whitaker who spoke with our personal stories editor, Emmeline Mead. Emmeline has been with MIA since 2014 and she shares with us some of her experiences over those times.
Bob Whitaker: Emmeline, you have been with Mad in America for many years. How did you first find us?
Emmeline Mead: I first came to work with Mad in America in 2014. At the time, I had been working with a radical mental health peer support organization called the Icarus Project for a number of years, first as a volunteer and later in a paid position.
They had a web forum that served as a sanctuary for this little community of lost souls and visionaries who were all helping each other through their struggles. I showed up there like a Prozac poster child with no critique of the mental health system or the illness narrative—no idea that it was something you even could critique. But people in that forum gently challenged my views and I came to understand that all these things I’d assumed to be medical fact were actually highly contested social constructs.
It wasn’t hard for me to make that leap because I’ve always been skeptical of authority, and also, it was pretty clear to me that I was only depressed because bad things kept happening to me. I had lived through some pretty nightmarish stuff like the suicide of a parent, being a foster kid, and being homeless after I aged out. To not be depressed would have been crazy. So all the broken-brain, chemical imbalance stuff, logically it just didn’t add up for me. I believed it but I was never really sold on it.
Somewhere in the midst of this, I stopped taking the Prozac, the last psych drug I would ever take. I hate to say it but I did not taper, and it wasn’t even a conscious decision to quit, really… I just never got around to refilling the prescription ever again. Prozac is infamous for sort of plopping a new personality down onto a person, and that personality might be more cheerful and outgoing and better at functioning in the world but it’s not who you really are. And after a while, that disconnect can make you feel like a zombie, and you want to die because you’re no longer in touch with your own soul. Eventually, some subconscious part of me just rebelled and said enough of this.
So that’s where I was at when Anatomy of an Epidemic came out. That book opened my eyes in so many ways but it also confirmed things that I already suspected. Over the years at Icarus, I had noticed that the people who seemed the most emotionally stable were often people who had left psychiatry behind, whereas the most devoted pill-takers often struggled with crisis after crisis. Anatomy gave me a framework for understanding why that might be.
You were touring with the book and did a reading in my town, and we met and you signed my copy. Then some years later I heard you were looking to hire a new moderator for the comments section, and since I had a lot of experience with moderating the Icarus forums, I applied and joined the team as community manager. I think there were maybe three or four of us running the website back then.
Sometime in 2015, Laura Delano, who was the personal stories editor, left and I stepped up to take on that work. Later I also took on the blogs editing when Kermit needed to step back, and the weekly newsletter when Justin needed to focus on the research news team. I would pretty much step up to do whatever needed doing and eventually found myself in the position of managing editor, which I was pretty proud of. But putting out five blogs and personal stories a week, every week, plus the newsletter and other tasks, by myself, for years… ultimately it was just too much and I wound up needing to take a leave from work. When I came back, I took on a much more sustainable workload. The personal stories were always the closest to my heart, and so that’s the main thing I do now.
Whitaker: Emmeline, these stories are often filled with a great deal of pain, a great deal of loss, a great deal of trauma. I wonder how you as an editor respond emotionally to the stories.
Mead: Overall, I have to say the work is pretty fulfilling… like you said, if you have meaningful work in life, consider yourself blessed!
For me, it’s an honor to be able to help people bring their stories to the world. A lot of these authors have dealt with a lifetime of their reality and their suffering just being dismissed and twisted and misinterpreted. The entire system of psychiatry is just an elaborate form of gaslighting, really. And so, having their story read by thousands of people might be the first time they were ever really heard and validated, especially by a community that understands the struggle. That can be pretty powerful. It’s important to me that each story shines.
But there can be a darker side to doing this kind of work. You once commented how I probably know more about how psychiatry hurts people than anyone in the world. I don’t know if that’s true, but I definitely know a lot about it. And the thing is, you can’t be so close to so much pain and not be affected by it, you know, not have it leave a mark on you. There’s a degree of vicarious trauma involved—for all of us at MIA, I think.
There have been stories I’ve edited that moved me to tears and haunted me for weeks. To work with those stories you have to be able to feel that, and hold that, and kind of sit with those shadows and those ghosts and bear witness and honor them, but you also have to take care of business and write emails and get the next story out. It’s tough. You need to keep your heart open to do this work, but you also need a thick skin.
Whitaker: What would you say you have learned from those stories? What do these stories collectively tell us, the listeners? What do we learn from them?
Mead: Psychiatry ruins lives, I guess would be the main theme. Our personal stories archive, I see it as a body of evidence, a growing record of the harm done. But it’s also a record of what helped, and how people were able to heal and recover. It offers both a warning and a source of hope.
One thing I see in the stories is that, like me, people usually had good reasons for any extreme states of mind they were in. And they usually know what those reasons are, not only after the fact when they’ve had time to reflect on it but also sometimes while it’s happening. Like they’ll be dealing with bullying, abuse, poverty, trauma… sleep deprivation, social isolation… racism, sexism, all the other isms… toxic diets and environments and relationships. Being scapegoated by their family is pretty common. Often a major life change such as a death in the family, a divorce or breakup, or losing a job is a precipitating factor… even something generally positive like leaving home to start college or having a baby.
Basically, these emotional states didn’t come out of nowhere. They were natural reactions to the struggles of life that might have resolved with time, but once a person’s given this hopeless prognosis and a bunch of pills it all becomes chronic and entrenched.
Whitaker: Emmeline, it’s been great having you work for Mad in America for nine years. Let’s hope you are with us for another decade.
Next, we hear from Mad in America’s Community Moderator, Steve McCrea. Steve shares with us how an early experience with therapy led to his interest in alternatives to psychiatric treatment.
Moore: Steve, welcome. Thank you so much for joining me today for this podcast where we look behind the scenes at Mad in America. I believe that you spent time as a psychological therapist, could you tell us about that and then how you first came to know about Mad in America?
Steve McCrea: I’m going to take you back a little further than that. I will say that I first got interested in therapy when I went into my own therapy in my twenties. I had a very good therapist and we looked at childhood issues and current relationships and how I could become more empowered and take charge of my life. It was a really good experience for about a year and a quarter. And my therapist said, “You know, you’re kind of a natural at this. You might be a really good therapist.” So I ended up having that in my mind. I was into science in college, studying chemistry. I ended up becoming a teacher after doing some work in the chemical industry and realizing it was incredibly dull.
But then I couldn’t find a job teaching and so I found this job working at a teen moms’ home that paid like dirt. I was doing the overnight shift at the teen moms’ home for like $800 a month. That got me into the field and I discovered I was very good at it, I was pretty natural at putting people at their ease. Getting them to feel safe talking to me and helping them figure out what they would do instead of what I would do. And I thought one big advantage I had was that I had no training whatsoever in psychology when I started.
So I was thrown back on what did I know, right? It’s like, here are these girls acting crazy and being hostile and angry and whatnot. And I’m like, well, what do I know how to do? Well, I know how to listen. I ask questions, I empathize, and it turns out those are all the kinds of things you need to do to be a good therapist. So that’s how I got into the field. And that was back in about 1986.
And I’ve had a bunch of different jobs since that time. I had a great job as a crisis counselor on a mental health crisis line. Then I ended up going into a job where I was doing involuntary detention evaluations. And that’s where I discovered what went on in the bigger mental health world. I was living in my own little bubble where I’m doing my thing and the people I’m talking to are feeling good and this all seems good. But I started to get to see what happened to people when they went into the hospital. And that’s when I started feeling like I can’t continue doing this kind of work because I was seeing how the system was treating people. And it was very different from what I knew to be helpful.
Moore: Was that a shock to witness that kind of treatment?
McCrea: Honestly, it wasn’t entirely a shock. I had always been kind of a maverick from the beginning. When I first started at that teen moms’ home, there was not one person on any kind of psych medication for anything. It was all positive peer culture.
We were trying to teach kids to think about things differently and to create a community with each other. Teaching them Carl Rodgers type statements, all that kind of good stuff. And it had its moments where it felt like it was pretty effective. But there were no psych drugs back then. Then when I moved to a job at a day treatment center and we started seeing Ritalin show up. There were kids who were on Ritalin and I didn’t see that that was very effective. I had my own views on that kind of thing.
So as time went along, I saw more and more reliance on psych drugs and less and less on actual human relationships. And that I think is what started making me pretty skeptical. But I still kind of felt up to that job. I still kind of felt like I was still doing good things, kind of like behind enemy lines as it were. And I was still able to have some control over the jobs that I had and control of the system. But when I got into that job, it was pretty clear how systematized it was. And honestly, when they went to the hospital, the only thing they gave them was drugs. And they just gave them drugs until either they acted like or said that they were okay now and then they would send them home.
And there seemed to be no concern for their quality of life or what the drugs did to them or didn’t do to them. And, you know, the big emphasis on the social workers was to keep the people taking their drugs. So that just pushed me to the point of thinking like, this isn’t a salvageable situation. It wasn’t stunning to me that it happened. It just got me to the point of thinking that these people aren’t doing this because they don’t understand, that this is how they do business. This is the core of what people do, and I do not fit in with this model. Ethically speaking, I felt like I couldn’t keep doing this.
Moore: And so what was it then that led you towards Mad in America?
McCrea: I had always been interested in alternative looks at the reality of the mental health world. I started looking at websites and I ran into MindFreedom. I ran into one called ‘Death by Ritalin’ or something like that and I started getting the idea that there were a lot of people being harmed by these things.
And I went to a book lecture where Bob showed up and he was talking about his book and I was just really impressed at that time. I had also joined in with a group called Rethinking Psychiatry, right about that same time in Portland. And that group contracted to have Bob come and give a speech. And so I got to know more about Bob and the book.
It was probably right about that time I started looking at Mad in America. And I really liked the community. The thing that struck me most was that it was a space for people who didn’t feel that the accepted paradigm was working for them. And it was okay for them to say that and speak about that. So it was great to see a website where people would just come in and say whatever they thought, and that was all considered okay or encouraged.
Moore: Could you tell us a little bit about what you do for MIA, what is your role?
McCrea: I am the moderator for the comments section. I spent a lot of time in the comments section before becoming the moderator so I had some relationships with some of the people who were regulars in there. And so it was a fairly smooth transition to take over that role. I retired in 2016 and I was looking for something that was very part-time and online where I didn’t have to commute or anything. And this just seemed perfect to me. And it has been, it’s been a wonderful place for me to land.
Moore: It strikes me that moderating comments is one of the most challenging tasks to do at MIA because there’s such breadth and depth in the discussions and it’s a role that requires tact, diplomacy and empathy. It’s difficult to balance so many differing points of view but you do it so well.
McCrea: Well, thank you. I appreciate that. I do a second side job as a soccer referee and the skillsets are similar.
Moore: Hopefully not too many red cards in the forums!
McCrea: We tend to avoid the red cards but every once in a while you’ve got to throw one out there.
Moore: Has your view of the mental health landscape changed over the years or have your experiences just confirmed your early suspicions?
McCrea: I wouldn’t say that it’s changed my viewpoint on things. If anything, it’s solidified just how bad it really is for someone who is stuck in that system and doesn’t have any outside perspective. I don’t mean to denigrate people who do use the system and find it helpful. I think that’s fantastic for them and I’m glad they’re able to make that work. But I think the main problem is that you’re given a certain story and you’re expected to believe that story. And when people start stepping outside of that and saying “Well you told me this was going to work and it’s not working,” people are mistreated and abused for trying to figure out what’s going to work for them rather than being treated with respect.
I’ll give you a quick story of when I was on the crisis line. I had this woman call up and she was frantic. For well over a year she had been trying different antidepressants and it just wasn’t working. She said “I just, I feel horrible. I feel like there’s no hope. I feel like I tried this and I tried that and I keep being told well just wait. It takes a while and then we’ll try a different drug et cetera and I just feel like it’s going to be like this forever.”
And so I said, “Has anybody ever told you that there are other things you can do for depression besides drugs?” And she is silent for a moment then she says, “No.” I said, “Well, there are.” She says, “Oh, well that’s good!” And so we immediately went into a long discussion about various other options that she might have. And I thought, how sad that this woman has been banging her head against the wall for a year. And nobody’s ever bothered to tell her that there are support groups, there’s therapy, there’s stuff you can read, there’s meditation. There are actions that you can take that actually could help you that don’t involve taking drugs. And she had no idea that that was a possibility because that’s what she was told.
Moore: That’s so sad, isn’t it, when the mainstream messaging is dominated so much by the psychopharmaceutical complex that people can’t see the wood for the trees because it’s all the same wood and the same tree.
McCrea: Exactly, and there are people who come on who are positive about their experiences, and we have no problem with those people having their voice too. But sometimes they get upset when they encounter disagreement from the community, however respectfully that might happen.
Moore: Steve, thank you. Was there anything else important that you think we should share with people listening?
McCrea: I guess the one thing I would say is that even within MIA there is this constant tension between the professional person viewpoint and the survivor-person viewpoint. I think that that conflict is central to why the whole system kind of doesn’t work. But even within MIA, you see that people get sort of higher marks when they do a blog because they have some credentials, right? And they are sort of held as being more credible somehow than the people who are just reporting on their own experiences.
And some of them [the survivors] have done a tremendous amount of research and know more than a lot of the professionals about what they’re talking about. But it’s that power imbalance there that I think MIA is trying to address. But there’s a point at which the survivors themselves have got to be the driving force to make this whole thing change.
I think MIA is a great place and I love the fact that this education happens for people who don’t know anything about this. I love the fact that it’s a great forum for people who have been harmed by the system to talk about what happened to them and how they feel and look into alternatives. But as long as we have this power imbalance where people who are degreed professionals or whatever get more credit than the people who are supposedly trying to help, I think we are going to keep having this struggle. It is one of the main things I had to address in learning how to be a good therapist. And like I said, I was fortunate I didn’t have any training, so I had no sense that I knew something that these people didn’t know.
But stepping down from that power position and being willing to listen is hard sometimes for professionals to do. We see people come into the MIA community as professionals and they end up leaving feeling a little battered. But there are a few people, Brett Deacon being a good example, who have taken advantage of the experience and have altered their worldviews significantly because of their interactions with the groups. And that’s where I think the real answer lies in that people need to just step down from their power position as professionals and say, “Hey, you know what? If we want to help these people, then maybe we should ask them what’s helpful.”
Moore: Yes, who are the experts in the room? It’s the people dealing with the condition or dealing with the treatment. Those who have experienced what harm looks like and what trauma looks like.
McCrea: Sure and maybe ‘normal’ is a little bigger and broader thing than most professionals have been brought up to believe.
Moore: Steve, I can’t thank you enough for spending a bit of time today to talk about the fantastic work you do. Anybody who’s visited the discussion section of Mad in America can see how lively it is. I think you do a great job of marshaling that and it’s a pleasure to see the discussion moving almost in real time.
McCrea: Well, thank you, James. It is always a pleasure to chat with you for whatever reason, and I appreciate you taking the time to listen to what I had to say.
Next, we hear from Mad in America’s Family Resources Editor, Miranda Spencer. Miranda joined me to underline why giving parents easy access to alternative information on mental health challenges in kids and youth is so important.
Moore: Miranda, welcome. Thank you for joining me today. Could tell us a little bit first about yourself and maybe how you first became aware of Mad in America?
Miranda Spencer: Yes. So, I had experience in the mental health system as someone who’s struggled with anxiety on and off since I was a teenager and I found a lot of help going to therapy and such. Then, when I was middle-aged, I went through kind of a personal crisis and went back to the mental health system and I discovered it had dramatically changed. The emphasis was on just drugs as the first line of treatment and they were trying to give me diagnoses I’d never had before that were more serious than seemed warranted.
The more I partook of this new mental health system, the worse I became and I just said “What happened?” I started researching and I came upon a website called Furious Seasons that was written by a journalist [Philip Dawdy] who had mental health issues. It was chock-full of articles and research, books, lists, and links about what’s going on in the current mental health system and with the extreme emphasis on medication. That opened my eyes and I started reading it every day.
At a certain point, I found out about Robert Whitaker’s books. I read Anatomy of an Epidemic, and it opened my eyes. Then I guess I found out about the website. I don’t think I knew about it until a couple of years after it was created but once I did, I started reading it. Then someone that I knew from one of my mental health reform listservs mentioned that MIA was looking for someone to do freelance journalism. I wrote to Robert Whitaker and he said, “Yes, you can do that, but we’re looking for someone to be an editor for our new Parent and Family Resources section.” I got the job and here I am now.
Moore: Thank you, Miranda. Let’s move on to talk about the Family Resources section of Mad in America which is such an important part of the site. Can you tell us a little bit about that and the work that you do to keep that running so well?
Spencer: Oh, thank you. I kind of do everything with a lot of help in coordination with others. The Family Resources section [then called Parent Resources] had already been started, I believe, by a critical psychiatry therapist named Eric Maisel, who was very involved in it. The idea was to help get it further off the ground. One of the first things we did was create a couple of online parent support groups for parents whose kids were in the mental health system and not liking what they found.
I helped Kermit Cole and Louisa Putnam, who are the group leaders, get that off the ground, and also two people in Europe who are on our board, Claudia Esteve and Olga Runciman. I now help plan the whole [Family Resources] site and have helped build it up over about four years that I’ve been here. We have blogs, a podcast, Q and A’s for questions that people might have about kids in mental health and psychiatry. A lot of personal stories, videos, and Town Halls.
We also cross-publish relevant science news from the main front page and news that is relevant to parents and families from our Around the Web section. All the time, we’re trying to come up with new things that might help people more. We also just started a newsletter because we’re trying to get more feedback from the people we’re trying to serve. That’s just the tip of the iceberg.
Moore: It’s so important, I think for Mad in America to have that communication with parents and young people, because with the soaring rates of young people being diagnosed and with the rates of prescribing, I imagine that parents out there are in a whirlwind of information when they first come across a diagnosis. Having somewhere like your section of MIA to go to, to try and untangle some of that and to try and get some non-mainstream steer, that’s incredibly important, isn’t it?
Spencer: Yes, people tend to come to us after they’ve gone through the mainstream system and it hasn’t satisfied them and harm has come. So they’re looking for alternatives. Although, what I’m hoping is that it will get to the point where people will maybe come to us first and see what all the options are before they decide what to do.
I’ve two little things to add to that. One is that I think there’s a real hunger for this type of information. I’m particularly concerned about harm because one of the personal stories that we had recently was a tragic story of a couple who lost their daughter based on her being extremely over-treated over several years in a hospital. That story got almost more readership than just about anything we’ve ever published. To me that says that people want to know, and people are very concerned.
The other thing that I’ve got to mention is that we are currently running a teen art exhibit where we’re soliciting contributions. I hope that anyone hearing this that is a teenager or knows a teenager will encourage them to create any kind of art about their experience in the mental health system and who they feel they are and what they have to say.
Moore: I wondered with the work that you’ve done if your thinking about mental health has changed any?
Spencer: I could go on for a long time on this. I mean, I eventually found wonderful practitioners who were very holistic and compassionate and who helped me dig myself out of a very deep emotional hole a number of years ago. So they are out there, but it’s not the norm, I find.
Sadly, the more I learned about the science and the more personal stories I read and so on, I just think we are going in the wrong direction. There is too much emphasis on pathologizing absolutely everything, drugging absolutely everything. The only good thing is that I do see that changing. Even the New York Times just the other day published a series of essays asking if mental illness is as much a social problem as it is an individual problem. I think that people are becoming more aware, but it just makes me more committed to the mission of Mad in America.
Moore: Thank you. Was there anything else that you think we should touch on or anything we should tell listeners to look out for in future?
Spencer: I would say if you haven’t given the site a good look we have a great search function and there’s so much information in there. You can go down a wonderful rabbit hole and learn so much about so many different things. The message is positive, people are resilient and there is hope, you can withdraw from psychiatric drugs if you do it right and you can heal from trauma. It’s just that the way that our current system wants people to do it is one-size-fits-all and that is not what we need. Please come to our site and read and think and talk about it.
Moore: Thank you for all the effort you put into the Family Resources section. I’ve made use of it myself, and it’s good to know that it’s there.
So last but not least, I want to thank you for being with us to listen to the podcast and read our articles this year. Thank you for joining us for these interviews, for your comments and for sharing and getting involved.