Changing Narratives: Reflecting on Mad in America’s Mission and Work

This week is a special one for us at Mad in America, as it’s the 200th episode of our podcast. Our first interview was with attorney and author of Zyprexa Papers, Jim Gottstein, back in July 2017. For this and the next podcast, we’ll be talking to the people that make Mad in America what it is, the people behind the scenes, who keep it running day-to-day.

Later in this podcast, we will hear from staff reporter Amy Biancolli, science news editor Justin Karter and arts editor Karin Jervert, but to kick us off today, we hear from Mad in America founder, Robert Whitaker.

Bob worked as a newspaper reporter for a number of years, covering medicine and science. He is the author of five books, three of which investigate the history of psychiatry and the merits of its treatments. Those books are Mad in America, published in 2002; Anatomy of an Epidemic, from 2010, and he was co-author along with Lisa Cosgrove of Psychiatry Under the Influence, published in 2015.

He was also a director of publications at Harvard Medical School for a time during the 1990s.

Bob joined me to talk about how Mad in America got started and how it strives to achieve its aim of rethinking psychiatry.

The transcript below has been edited for length and clarity. Listen to the audio of the interview here.

James Moore: Bob, welcome. Thank you so much for joining me for the Mad in America podcast. You and I spoke some time ago, actually just before the podcast got up and running. So, it’s interesting to reflect on that time. 
To get us started, obviously, most people listening will know that you are the publisher of Mad in America and the driving force behind it. Mad in America got started in January 2012 and it looked quite different back then. I wondered what was your aim or objective when you first got the site underway.

Robert Whitaker: What’s interesting is that there was no grand plan or grand vision for what it might become. The initial plan was very simple. I published Anatomy of an Epidemic and that led people to say, this is a scientific story that needs further exploration and we also need to hear from patients, people with lived experiences, what their experiences are.

I heard this from psychiatrists, and I heard it from many people, that we as a society needed to rethink this whole story of psychiatric care. But, really, our initial vision was let’s report on science, and then let’s build a forum for people to write blogs and personal stories, and let’s put up some resources related to the research literature. That  was it.

There was no larger vision other than to start to set up a channel for a) knowing the science, b) hearing from people with lived experience and c) hearing from people thinking about what might be different, how to change things, how to build a new system of care.  We started initially with a very small number of bloggers.

Mad in America, January 2012

Very few people were working for us, initially. Kermit Cole was a one-man band in putting out the front page. So Mad in America grew organically and I think the thing that’s important to understand, or see, or recognize, is how it began to fill a niche where there was so much demand. In other words, there was a larger and larger public waiting for this type of information, eager to hear it, eager to share their stories and we just rode that wave over time as we expanded.

We then launched Mad in America Continuing Education; you launched Mad in America Radio for us. How did that start? You interviewed me for your Let’s Talk Withdrawal podcast and the next thing you know, 20 minutes later, we were saying why don’t we do a Mad in America radio podcast?. Which, by the way, is how Mad in America has evolved. As we moved along, we would discover opportunities to expand and do something new.

Our expansion lately into art resulted from Karin Jervert coming on board. She had been involved in the arts and the lived experience community.  Mad in America Continuing Education came from when Bob Nikkel became involved. Bob had been the former State Commissioner of Mental Health for Oregon and one of the things we wanted to do was reach professionals with this alternative way of thinking.

I think what’s important is that we stumbled into a niche where there is a great need for information and then talented people stepped forward. One thing that I’m proud of with this organization is that we immediately recognized the potential in individuals who were stepping forward and let them run with whatever their area of expertise was, or interest was.

Moore: Thank you, Bob. It’s been quite incredible in the time that I’ve been involved to see how the site has grown. Here we are, a decade on from the start, the site has grown in size and scope, it has 11 globally-affiliated sites, some five million visitors per year. It not only covers science now, it covers music, art, lived experience and so much more. So, how do you see Mad in America’s role now in terms of the landscape of all things mental health? How does it fit in, do you think?

Whitaker: I think we’ve become quite an impactful voice, to be honest. The growth of the international affiliates has been really important. Now what’s happening is that they are joining together into this international network of affiliates and we’re learning from each other. We’re learning about what different countries are doing and we borrow information from each other. By borrow, I mean republishing articls and that sort of thing, and that is giving us a collective voice on an international stage demanding change.

We are also making it known that we have organized ourselves around a false narrative–that ‘chemical imbalance and drugs are so great’ narrative. I think we are an important vehicle for deconstructing that old narrative and opening ideas to new narratives.

I can talk about the type of impact that we’ve had. When the UN Special Rapporteur for health Dainius Pūras was coming up with his final report, he was relying on Mad in America to inform his reports and he even relied on several of our science writers to help him with those reports.

Same with the World Health Organization, when it published its community mental health report. One of our board members was a consultant to that and several people who’d written for us were consultants as well, which showed they were seeing us, these leading organizations, as an information source, but also a philosophical source, a psychological source for what was possible.

So, I think actually our impact goes far beyond just the visitor numbers, because it spreads the message throughout society, and so much of what we were talking about 10 years ago is now becoming accepted wisdom and accepted knowledge. You see it even in ordinary research circles, people talking about things that we said 10 years ago and now they are accepting it, such as, “Yeah, that’s true, there’s no evidence for long-term benefits with psychiatric drugs.”

I’ll give you a small anecdote about our impact. We were having a science team meeting the other day and one of our science team members, Samantha Lilly, is in Argentina and she was going to interview, I think, the health minister of Argentina. The health minister goes, “Are you “the Samantha Lilly”?” And she goes, “Well, I am Samantha Lilly,” and he goes, “I just read an article you wrote,” which was published on Mad in Mexico. So, how did it get to the health minister? Because we publish it in English. Then Mad in Mexico republished in Spanish and now you have people in South America reading science findings published on Mad in America, at the highest levels.

I was so thrilled to see that chain of information making its way up there and I think that is an anecdote that really explains how our impact is beyond what you just see in the visitor numbers.

Moore: People that regularly visit Mad in America or listen to the podcast will have seen that science reporting is a big part of what Mad in America does. How do you decide what science is relevant to cover for Mad in America’s audience?

Whitaker: There are so many scientific findings that never make it into the mainstream media. Why don’t they make it into the mainstream media? Because the mainstream media has this idea that good science is that conventional narrative. So when they hear things like drugs don’t fix chemical imbalances, they might just dismiss it. Or, even more important, how does the mainstream media get most of its information? It’s fed to them through the PR of the journals, or say the American Psychiatric Institution, and they have PR channels for promoting conventional stories. The research literature is filled with information and findings that actually contradict that conventional narrative and I wanted us to be an outlet, a forum for broadcasting these findings that the mainstream media never really reports on.

Of course, we are also interested in findings about alternative thinking and alternative programs, but the biggest thing is we’re going to be a forum for scientific findings that don’t make their way into the mainstream media.

Now, that’s the mission. But beyond that, I mentioned earlier that people have domains of responsibility. So, Justin Karter is our science editor and he runs that science team. I will feed him some story ideas or study findings and then he communicates with his team and basically, he has built a template for how to report on these findings. What’s the methodology, what are the limitations and what is the context?

One of the things we do that I think is so interesting is that when you read our science reports, they’ll report the finding, and then often they include  how this finding fits into other findings. So, it’s not just a singular finding. But that’s our purpose and what we do.

And I want to emphasize again how Mad in America runs through the talents of a number of individuals. It’s not a hierarchical type of organization. Justin Karter is our science editor. He built that team up and he runs it. That’s part of our organizational strength.

Moore: I wondered what you felt was MIA’s biggest achievement over the years and was there anything that you feel frustrated that Mad in America hasn’t been able to accomplish yet?

Whitaker: Those are two good questions. The biggest thing that we’ve been able to accomplish, I think, is to continue doing what we’re doing and expand at the same time, even as we are going against the narrative where all the financial influences are on the other side. The pharma money, the mainstream advertising money, we don’t have any of that. We don’t have any of the usual funds. We are a non-profit, grassroots effort but we’ve been able to continue thanks to the generosity of donors. Nobody corporate is paying for us. It is individuals who are supporting us.

So, I think the proudest accomplishment is a) that we’ve kept it going, b) we’re continually expanding. We are continually grabbing new opportunities, like the growth of our affiliates in the last two years. Mad in America Radio, when you popped up. I think we’ve been really good at, when an opportunity appears, seizing it and doing it fast.

The final thing is the loyalty of the people working for us is incredible. People just stay with us. Obviously, they are not making much money but they are so loyal and they are so capable and they are so devoted to MIA. So for me, as an individual, that has been really rewarding to see the dedication of the individuals here. It’s just astonishing.

Now the biggest failure or disappointment is that we haven’t been able to bring forth the voices of people with lived experience who really aren’t heard at all in society. I am talking about poorer people, foster care kids and poorer people of color. We’ve struggled. There are so many parts of our society that are just hidden from the world. Say, the experiences of ordinary black men in the system. The black men in the system, not only are they likely to get more severe diagnoses but they are also often put under state guardianship and they have to continue to take antipsychotic medications.

Our personal stories, which are so important, do not yet convey the diversity of experiences in the psychiatric system that exist across racial diversities and across class diversities. We’ve tried, and while we haven’t succeeded, we will continue to try. Sometimes these populations we’re trying to reach are so isolated from any sort of mainstream approach that it’s been hard, but we’ve tried to it with video interviews and we’ll keep trying, but that’s the biggest disappointment.

Moore: Would you say that the main challenge for Mad in America going forward is trying to be representative of the diversity of the community that it’s trying to serve?

Whitaker: Yes. Here’s the thing. Part of the fundamental mission is making known that this paradigm of care that we have has done a great deal of harm. You see it in disability numbers, you see it in people trapped on medications, and in people out of work, and people who feel they’ve lost years of their life. You see it in the pathologizing of kids who then go on to careers as mental patients. So that’s shining a light on how this story, and the way it’s been applied to basically expand the financial interest of certain groups, is doing great harm and we need to rethink that.

There’s a missing part of that story. We’re missing the voices of those who are foster care kids and just get shunted into this and then by the time they are 18, they may age out of foster care, but now they’ve got a life ahead of them as a mental patient. They grow up on antipsychotics.

We have poor people in various cities and in various parts of our country, where people just don’t have opportunities. Their lives are so difficult and because their lives are so difficult maybe they get shunted into the psychiatric system. What’s happening to those people in the psychiatric system? How does it affect them and what is it like for them? Whether they be in psychiatric hospitals, group homes, or living on the street. So, we are trying to be an organization that writ large is telling us how is psychiatry affecting human beings in various societies, in the US and other societies.

So much of what we get right now is the story of people of a certain class having been harmed. Sort of an educated class, a literate class who are able to tell their story or even are motivated to tell their stories. But there are whole groups of people cycling in and out of hospitals under state control, in and out of foster care, or in foster care, that are just being pathologized, categorized, drugged and un-listened to, and that’s part of the harm done. If we talk again in five years, I hope we’re doing better on that.

Moore: Is there a message that you’d like to give to Mad in America’s audience?

Whitaker: Here is the message. I think we have had a failed system of care that was given to us by psychiatry as a guild and by the pharmaceutical industry. It was their story that we’ve organized ourselves around. But if you really look at a bigger picture, this is a story about how society cares for and supports its citizens in two ways: those who do develop psychiatric difficulties, how do we respond to them? And also, how do we create a society that is less stressful, that is more nurturing of human beings, children, people as they become young adults?

The message I would give to Mad in America listeners is that you all are part of the solution. You have the obligation to be part of the solution. You need to help us think about how we as a society can change this paradigm. The only way it’s going to change is through a societal discussion and a societal demand about what is possible and how we should organize ourselves and how we should care for others who are struggling in these difficult ways.

I remember while doing my reporting for Mad in America I came upon this phrase, it’s not going to be an exact quotation, but the person said this: “You can judge the ethical quality of a society by how it takes care of those who are the most unfortunate people or the people who are struggling most in their society. How does it care for those people who are the dispossessed, the poor, the struggling?” I don’t think we’re doing a good job of that right now. So that’s the larger ethical story and what I am saying to our listenership and readership is that your voice, your commitment to this and your activity in this is what is going to help us build a different narrative and way forward.

Moore: Bob, to sum up, thank you for being with me today and I have to say that in the years that I’ve been involved with Mad in America, what’s impressed me most is the integrity of the people that work here and I am pretty sure, having spent time talking with you, that all of that flows from your personal integrity and the way that you approach what we all do and where we go. The integrity of how we approach the science I think is really important and that does flow from you.
I think if you want to know where psychiatry or mental health should be in 10 years’ time, read Mad in America, if you want to know where psychiatry was 10 years ago, read something current in the mainstream psychiatric outlets.
So, just thank you for all you do for all of us, Bob. I can honestly say it’s a privilege and an honor to get to work with you.

Whitaker: Thanks, James. Those are very kind words but they are kind words aimed, I think, at all of the people who work at Mad in America, and we are a growing family. It’s meaningful work and if you have meaningful work in life, consider yourself blessed.

***

Moore: Next, we hear from staff reporter Amy Biancolli. Amy is a journalist and she joined me to talk about her work with MIA and the power of ethical journalism.
Amy, welcome. Thank you so much for joining me today for this special little podcast to reflect on Mad in America and the people that make it all run. So firstly, welcome. To kick off I’d like to ask a little bit about you and your history and what it was that brought you to Mad in America.

Biancolli: That’s a big, interesting question and I’ll do my best to give a concise answer. Everybody who is associated with Mad in America has a story and my story is not one of personal lived experience as a psychiatric survivor, but as someone who has suffered suicide loss.

I lost my sister, Lucy, to suicide in ’92. Her ordeal was years long, involving just the worst sort of polypharmacy. She was hospitalized more than a dozen times and she was on literally dozens of medications of different classes, including some drugs that were prescribed to counteract side effects. Unfortunately, a lot of people listening to this podcast will be familiar with the horrors of polypharmacy.

Our father had actually made an attempt when we were kids. I was 11 and she was 14 and he was hospitalized for six months, but it was an era when people weren’t automatically drugged. As was actually, pretty much the norm at the time, after six months of therapy and healing recovery process, he never was suicidal again. So that was my initial experience with psychiatry, which was not a negative one. My dad survived his suicide attempt and never made another.

Then, in 2011, my late husband Chris died by suicide and that was a shorter descent for him. In my sister’s case, it had gone on for years. In Chris’s case, it was a six-month spiral. It started with insomnia and led to a cycle of insomnia, anxiety, depression, insomnia, anxiety, depression. He was hospitalized a few times and nothing worked. It was the same kind of thing and I witnessed first-hand the failures of psychiatry. Treatment just didn’t work and I remember him saying to me at one point, when he was in a brief hospitalization, saying, “How is this therapeutic?”

Through all of this, I was working as a newspaper journalist, mostly covering culture and local arts for the Albany Times Union, which I did in a couple of different stints and in between I had worked as a film critic for the Houston Chronicle, but I was also writing memoirs of surviving suicide.

When I was at the Times Union originally, I got to know Robert Whitaker, Mad in America founder, who was always just a fabulous and very meticulous health and science writer. I knew Bob when he started writing about this and when he came to his epiphany about the failures of psychiatry. Then I heard about the founding of Mad in America and it sort of happened very naturally that he was looking to hire a staff writer/reporter for the webzine and I just thought this is the universe cracking open and saying, “Hey Amy, you know this issue that’s been important to you your entire life in ways you could never have anticipated and ways that you’ve written about personally? Outside of your personal life, this is an opportunity to do some reporting on a really significant topic.” So, I took it and that was in the middle of COVID, the late summer of 2020.

Moore: Amy, I am incredibly sorry to hear of all that you went through. I can’t imagine what’s required to come to terms with a loss of that magnitude in your family. I think you are incredibly brave to go through that experience but then write about it for others to understand and take solace from. So many times we miss chances to perhaps learn from these experiences. I really admire you for writing about that experience.

Biancolli: I love that you used the word “learn,” because I’ve always felt about the privilege and gift of being a journalist, I’ve always framed it in terms of learning. Whatever it might be, whether it’s local arts or film–and I was frequently taken off my beat to cover other things–but I was paid to learn. I’ve always been paid to learn, paid to be curious, paid to listen and that was even true when I worked as a film critic. It’s funny, this is not the public conception of journalism, but you have to humble yourself to say what is the story being told. Whether it’s a movie on screen or whether it’s a person talking to you and then you have to try to understand it from that viewpoint.

I also feel like something horrible happens, it’s always going to be bad, it’s always going to be a horror, a tragedy, but that doesn’t mean that good can’t come in the wake. Usually, small goods, sometimes big goods, and it’s likelier that those little goods will happen if you’re willing to share your story. It’s definitely helped me in a weird way. I mean, it’s intense to have to retell the story, but it’s the power of connection.

Moore: Thank you, Amy. Could you tell us a little bit about the kind of things that you do at Mad in America? Some reflections on the pieces, perhaps, that you’ve worked on in your time with us?

Biancolli: Certainly. Talk about learning, it’s been astonishing to me the conversations I’ve had with people and all that I’ve learned. I’ve been doing deep-dive stories, long features, interviews and a few podcasts, as you know. I’ve started doing book review roundups as well, doing non-podcast interviews and one-on-ones with people. Also, I should just highlight this, stories about alternate approaches, alternate efforts, alternate groups of people, like those in the Pacific Northwest who do organize around rethinking psychiatry, like the Inner Fire Residential Community in Southern Vermont for people either trying to stay off or taper off psych drugs.

I did a three-part deep-dive series on the mental and emotional well-being benefits of music and that was fascinating. Music is important to me, so none of it was surprising to me on a personal level, but that was really fascinating. And I did a big story on the crush on college counselors and the massive influx of students looking for mental health services, and how those people who work for those services, how they’re coping.

One of the most extraordinary pieces I did was a piece that I helped shape in the voice of this extraordinary person, Carlton Brown, who told his story to me when I sat down with him. We sat down for several hours and he told me his story and then with his approval, I used his words and cleaned them up a little and shaped them into his account of living on the streets in New York City. His interactions with police and psychiatry, hospitalizations, his drugs and his recovery and his arrival, finally, at a literal place of peace where he calls home, which is in a supportive housing community up in Troy, New York.

I just feel like I’ve been so privileged to talk to just so many people, telling such extraordinary stories of survival and beyond that, recovery. I mean, what amazing human beings are out there doing this work.

Moore: I absolutely love the richness and diversity of your writing. It’s a side of journalism that I hadn’t properly appreciated before, to amplify the voice of the person that you are talking to and to give them the platform for them to tell their story, but to guide them in a way that they can really give due diligence to the experiences they’ve had and I think you do that wonderfully.

Biancolli: Thank you. As I said, it’s a privilege and I’m always in awe and I hope I never take it for granted when someone trusts me and tells their story. That’s just extraordinary to me. It’s like this random journalist that they’ve never met and maybe we’re talking via Zoom. In Carlton’s case, I sat down with him in person but it’s a relationship of trust and I’m awed, I really am.

Moore: I wondered if your thinking about all things mental health had changed any since your time with Mad in America. I was struck by how you talked earlier about the situation with your father, where he was taken in and was treated, and then he was let go, and that made a big difference for him. Compared with perhaps sadly with your sister, where she was taken in and drugged and stayed unwell, sadly. So, there is quite a shift there just in those different generations, isn’t there? So, I wondered if working at MIA had made you think differently about mental health, or did it just confirm what you already knew from your own experience. 

Biancolli: Kind of both. It gave me a new vocabulary and you know how you can know something and understand something, but then there is a shift in the light and you see it differently or you see it more fully. I often reflect on my sister’s experience with all the drug cocktails she was on and the neuro-psycho-pharmacologist who was always just throwing whatever new drug was out there at her to counteract this, that or the other thing.

I know there was a movement then, but I wasn’t aware of it, it wasn’t as out there. I mean, there wasn’t an internet for one thing and she wasn’t aware of it, I wasn’t aware of it. The idea of wholesale questioning of the pharmaceutical model wasn’t part of the conversation then, but whenever I read or hear an account of someone’s story, like all the personal stories on Mad in America of people going through basically what she went through, or going through the more compacted version of what my husband went through, I think, oh okay. Yeah, so that wasn’t unusual.

I think the awakening for me, not just specifically with this job but with Robert Whitaker’s work and Mad in America, is  the realization that it’s just part of a huge and catastrophic norm that this happens so frequently and if anything changed for me, it was just saying, all right, so those horrors that my loved ones experienced, or in my father’s case, didn’t experience, that’s just reflective of what’s wrong with this broad paradigm.

For me, it was always like a personal story of suffering and loss, but now I’m much more aware of the movement and the language. So, for instance, I can’t use the term “mental illness” any longer. Before I started working for Mad in America, I was aware that some people wouldn’t use that term. I never used the term in any sort of dismissive way. I was always describing someone I loved who was “mentally ill” or descended into “mental illness.” I don’t use that term any longer, because I’m realizing just the word illness has got so much baggage and it’s so medicalized and the whole problem with this is the framing of people suffering in terms of the diagnostic model.

So that has changed and just my awareness has changed and my understanding. It’s been gradual over the last decade, but especially working for Mad in America.

Moore: Thank you, Amy. Again, before meeting Bob and working with you and seeing the work that you do, I didn’t realize how valuable a journalistic lens was for this work because much of what you see on the internet has a scientific lens applied to it. It all sounds very convincing and it all sounds very evidence-based, but the job of a journalist is to bring out the person at the center of the science, isn’t it? 
So many times, when you speak to the person you realize the science has been corrupted in the way it’s been applied to that person, but it’s only by looking perhaps through a journalistic lens that we can get to that.

Biancolli: Yeah, that’s interesting. That’s ultimately it, telling the stories of people who are affected, that’s ultimately the goal of all journalism. And I am just so grateful for this opportunity to write about these extraordinary people and these extraordinary efforts and literally telling a different story about mental health and wellbeing. 

I realize mental health itself, there is a lot of conversation around that term, as is the case with any movement, there are conversations about how to have conversations because this is an extraordinary movement that we are in the middle of.

So much has changed just in the time since Bob founded Mad in America and I know that more will change and I realize we’re not at any kind of happy ending just yet, but that to me is just, I don’t think thrilling is too strong a word. It’s really invigorating, intellectually, morally, emotionally, journalistically to be covering and in a way being part of that movement. I’m not, as I said, in a sense that I am not a psychiatric survivor myself, but it’s profound.

Moore: Amy, thank you. I consider Mad in America very fortunate to have you working with us and there is such richness, depth and diversity in the stories that you bring to Mad in America. I love the fact that music is so important to you and it comes out in your writing.
I think music, art and poetry actually figure a great deal in an awful lot of people’s recoveries, far more than it’s given credit for, actually. So, I love that you bring music and art into your writing too. I am so grateful you could join me today to talk all about it. Thank you.

Biancolli: Thank you so much, James.

***

Moore: Next, we’re joined by MIA’s Science News Editor, Justin Karter. Justin heads up our science news team, in addition to being a staff psychologist at Boston College University. Justin tells of how Mad in America’s science team became established and explains some of the guiding principles involved in discovering and reporting on science content that often gets ignored in mainstream journals.
Justin, thank you so much for joining me today for this podcast where we’re actually turning the focus on ourselves a little bit to what Mad in America does. You have been such a key and important part of all Mad in America has achieved for quite a while now and I’m just interested to get your thoughts on how Mad in America does its thing, but before we get there, I wanted to ask about you and how it was that you first got involved with Mad in America. What brought you to it in the first place?

Justin Karter: I am really excited to have the opportunity to step back and reflect on the work that we’re doing and where we started and where we’re headed.

So, it was back in 2015 that I initially began working for Mad in America as the news team writer and I was introduced to Robert Whitaker by Lisa Cosgrove who I had met through the American Psychological Association, Humanistic Psychology Society. At that time I had a previous degree in journalism and I had just finished my Masters in Community Psychology. I was looking for a way to prepare myself for a doctoral program and also to work on an activist approach to mental health.

I was really excited to get to meet Bob. In my Masters program at Point Park University, we’d actually read Mad in America and Anatomy of an Epidemic in different classes and the professors there were really adamant about changing the paradigm around mental health. So, Bob’s work was a centerpiece of that and then to be introduced to him was really exciting and then for him to ask me to come and join the team and contribute in some way, I was thrilled.

I remember leaving his office in Cambridge and calling some of my professors and saying, “you’ll never guess, I just met Bob Whitaker and I am going to be working with Mad in America”. So, it was really exciting from the go and my initial role here was to summarize research that was coming out that very broadly didn’t quite fit a narrow biomedical model for mental health. So, it wasn’t just the “new drug discovered for this,” or “a new gene discovered that might contribute to schizophrenia,” the kind of stuff that was being reported most frequently and usually straight out of a press release and into the newspaper in a lot of the mainstream outlets.

What I started doing was just combing the literature for things that I found interesting that didn’t quite fit that model, things that had to do with social determinants of mental health or adverse effects or drug efficacy issues or conflicts of interest in medicine and writing brief summaries of them for the website, one a day for the weekdays for that first year.

That was really an education. It prepared me quite a bit for my future studies and it was pretty fun to do too.

Moore: In recent years, Mad in America has really expanded its science coverage, not just in terms of the amount of material it produces but also, perhaps, broadened and expanded the conversation into many other areas other than just psychiatric drugs or diagnoses and the DSM. You now have a science team that you look after and coordinate. Can you tell us a little bit about how the science team came together and how it works to produce all this content for Mad in America?

Karter: So the expansion of the science team in terms of what we cover and the research that we look at is really a credit to the team that we’ve put together and the diverse interests and life experiences that everyone brings to the team and what they choose to report on and how they choose to report on it. I feel really lucky to have pulled together friends really, people that I’ve met through doctoral studies, through different conferences, through connections doing scholarship together and people who have approached me via email and said, “I am interested in what’s going on in Mad in America,” or “Hey, I read something on your website for a study that I was doing. I’d like to get involved.”

It started initially with a core group of us from UMass Boston who were all students of Dr Lisa Cosgrove. We were all coming from the same perspective. Then over time, we added a lot of really great young scholars who are now, many of them, are graduated and professors or researchers, or clinicians in their own right and some are still students and who are just producing really high-quality work for us, and bringing different vantage points of perspective to the team.

Everyone gets to select their own research article that they choose to cover. I suggest a number of them every week to the team and people can pick from those, or they can follow their own interests if they find something different. Often, people are doing their own research for their dissertations or for different studies that they are a part of and they use it as an opportunity to do their literature review in a thorough way.

So, over time, these students start to build up their own cache of research that they summarized and covered and really thoroughly explored, which they then can also use for their studies and we publish those summaries separately. The research that people are interested in and that they are doing themselves shapes what we cover on the website quite a bit.

Moore: That’s really important, isn’t it, because you’ve mentioned before that Mad in America, even for yourself in your own work sometimes, has been a valuable reference tool. I guess what’s important is the kind of research that’s often covered in Mad in America is not research which might figure all the time in the big, high-impact journals.
So, Mad in America in a way offers a way to magnify that research and perhaps get behind the paywalls and expose people to wider thinking than you might get if you just followed, say, the BMJ or similar journals.

Karter: Absolutely. In terms of using Mad in America as a research library, I think that’s one of the ways in which Mad in America continues to expand and maybe is currently being underutilized by researchers. Now that we’ve had the research team running for six years and we’ve summarized five articles a week, so we’ve got over 1,000 articles that have been summarized by our research team members. You can search through those on the website and read a summary and then we link directly to the study and provide citations at the end of each research news article.

So you can grab the citation, you can go to the study and read more thoroughly, decide if it’s something that’s helpful for you and your literature review or the paper that you’re writing, and you can really put together a pretty solid start to a literature review or an outline to a literature review by searching through the reviews that we’ve done and summarized on the website.

Moore: You talked about your first meeting Bob and then summarizing articles yourself and then developing into a science news team that broadened everything in terms of their view of the world and their preferences. I wondered what was the impact on you, and particularly, has the way that you thought about the mental health landscape changed in the time that you first joined Mad in America and then through your subsequent experiences with the science team?

Karter:  I touched on this a little bit in the interview I did recently. The two major effects that come to mind right away are; one, just being humbled by the complexity of these issues. So, broadly, the complexity of human consciousness and the mystery at the heart of that, the complexity of the brain, its interaction with our environments and the way that we shape and are shaped by each other. Reading research that’s all taking narrow chunks of that mystery and trying to elucidate it and explore it. Seeing the arguments, the points of conjunction and disjunction, it’s a reminder of the mystery of our existence and the complexity of human experience. That’s a humbling feeling.

The second piece is being exposed to all of the in-fighting, turf wars and different ideological perspectives on mental health that arise in the psy disciplines generally. Within psychiatry, between psychiatry and psychology, between psychology and social work and within each of those fields. The different critical and ideological perspectives that tend to butt heads with one another.

Seeing all of those fights and seeing all of those arguments and seeing all of the different ideological perspectives is helpful in reminding me of how little each conceive from our own perspective. It’s also helpful and it shows you where the points of disjunction are, where the fault lines are and those are the areas that are exciting. Those are the edge of the frontier where we don’t quite have an agreement yet. We don’t quite have a language for how things work and it points us to the most critical issues to explore in the field.

So whether that’s diagnosis and what it means to have a disorder, which brings up all of these huge issues; or whether it has to do with human rights in mental health, how do we think about the rights of people who are diagnosed and some people see them as a threat to themselves or others, how do we balance that threat to ourselves and others with basic human autonomy and dignity and agency. I think these are examples of places where we have wide disagreement in the field and there are a lot of competing perspectives and it points us to what’s most important and the issues that need to be worked on, talked about and thought about with a great deal of nuance.

Moore: If we look to the future and where Mad in America is going, then what would you like to see the science team focus on going forward in terms of its reporting for Mad in America? Is there one particular issue that you think is so important that it needs much more attention, or is it that all of the issues need attention and it’s just a question of trying to cover as much as you can?

Karter: I think that we’re starting to see the pendulum swing a bit and we’re starting to see the paradigm change. Mad in America’s influence, although not always recognized, is clear. Other news outlets are covering mental health issues with a great deal more nuance. They are often interviewing or citing the people that we’ve already interviewed and cited for years.

So I think the conversation is shifting and so where do we go from here? We’ve got a little bit of momentum. People are open to seeing mental health as a more complex issue, particularly with regard to social justice, political issues and social determinants of mental health. How do we push the conversation forward? It feels like the leading edge of that conversation is around the inclusion and participation of people with lived experience. Mental health issues or lived experience of psychiatric confinement, or lived experience of psychosis, there are different ways of defining that.

I think as a news team, one of the things that we’re wanting to push forward is increasing lived experience perspectives on our news team, but also covering research coming out of the mad studies field, coming out of critical disability studies, coming out of psychological humanities and first-person memoirs of madness or experiences of distress. I think increasingly, we want to push forward in that domain, towards greater inclusion of those bodies of literature that are consumer or survivor and ex-patient literature, or psychosocial disability literature. We also want to have more inclusive practices on our team as well.

Moore: Thank you, Justin. Just before we come to the end I wondered whether there is any message that you’d like to give to people trying to see and understand where the science is going on these particular issues.

Karter: I would say a couple of things to keep in mind, is that every individual research article is a small piece of the puzzle that’s pointing us in a different direction, that’s broadening our picture, that’s broadening our conceptualization, but that none of them provides a totalizing account of any experience of madness or mental distress, or mental ill-health. Just my struggle there, trying to find the words for that points to probably the second thing I would invite people to keep in mind, is that as we’re writing these, the language is evolving and we’re on our way to finding better language and better ways of thinking about some of these issues, but the language itself is a limiting factor.

Moore: Justin, I just want to thank you and the science team. The team under your leadership and guidance does a stellar job and applies real legitimacy and rigor to the story and the narrative that we hear so often and that the science team bring those other narratives to the fore, allowing people to really understand and appreciate things that might be quite difficult to find otherwise.
So, I thank you so much for the work that you and the science team do.

Karter: Thank you so much, James. The last thing I would add here is that I know for myself and for many members of the news team when we talk about the work for Mad in America, we see this as an opportunity to promote the kind of work that we’re doing and the way that we’re thinking about mental health issues, but we also see it as a service to the field.

We know that we can publish dense, theoretical treaties in niche journals and have them read if we’re lucky, by our parents, our partners and one other person and a lot of working hours and intellectual labor go into doing that and it’s worthwhile to do that for its own reasons. We also know that Mad in America provides an outlet for reaching a broader public for providing some service to the field in trying to change the field for the better from within.

So, we’re really excited to have the opportunity. I know I am and I’m speaking for others, to be able to do this bit of activist work to provide this bit of service to the field and to service users and to our readers and I just want to express gratitude for the opportunity to be able to contribute in that way.

***

Moore: And finally, for this first part of our 200th podcast, we’re joined by Mad in America’s Arts Editor, Karin Jervert. Karin is a fine artist, writer and psychiatric survivor. She joined me to talk about her work and the vital role that art can play as a means for people to tell their stories.
Karin, welcome. Thank you so much for joining me today to talk a little bit about Mad in America this time. To get us underway, I was really curious actually to ask a little bit about you and some of your experiences and how it was that you came to know about or to find Mad in America in the first place.

Karin Jervert: Yes, thank you so much. I am so happy to talk with you and to catch up on this and congratulations on the 200th podcast.

I was labeled bipolar at 21 and hospitalized several times over almost 20 years by the time I ran into Mad in America. A year or two before the pandemic, I was really starting to see how the actual treatment that I was receiving for this label I received could have been the problem. I was like, wait a minute, I am not sure that this is helping me in the way that they are saying it’s helping me.

It was a slow burn really, but at some point, I actually just Googled trauma from “mental hospitalizations” and I ran into the Icarus Project, which is now the Fireweed Collective. Basically, I just started learning a new language. It was an information dump. I just got all this lived experience of harm through psychiatric medications, harm through gaslighting in therapy and harm through mental hospitalization trauma.

It was all these things that I had never been exposed to prior. But, there was always this needling bit of me that was like something is wrong. I could never quite accept the diagnosis. I could never say, “no, this fits perfectly, this is who I am, this is what I need to do.” There was also gaslighting around that, where it was like, “If you can’t really accept that, then there is something going on with you that’s not right.”

It’s funny because, in the end, the healing that had to happen, was that I had to not accept it and trust that core intuition that something was not right about it. So, long story short, I wrote an essay and after all of this learning, all of this working through what I had learned through the Fireweed Collective, I wrote Can We Allow Suffering. That was the first thing that I ever submitted to Mad in America, but around this time, the pandemic had begun and I had been trying to find work. I had worked at a bookstore but I had gotten laid off during the pandemic and going to work at Mad in America was the next step.

I want to be involved. I want to help bring this information to others because I really felt it saved my life. The information on Mad in America, the lived experience narratives on Fireweed, the connections there. All of this, I felt saved my literal life because I started withdrawing and as soon as I got off the Latuda, which I was on an extremely high-dose, the suicidality that I had struggled with for five years just disappeared. Suddenly, I wanted to live and it was like, what? 

How is it okay that these medications have suicidal side effects? That honestly, James, for me, that’s insanity. If someone comes to you with depression and feeling just completely despondent about life and you give them something that could possibly turn them towards suicidality. That’s insanity and I will say, when I use the word insanity now, I only use it in the context of the well-funded kind. I don’t use it in any other context. I would never call myself insane and I would never call any of my peers insane, but the well-funded kind is the kind of insanity I talk about. So that to me feels like insanity.

I sent out an email to Bob and I was like I really want to help with this. I guess because I had a background in social media and I had a background in arts and all this stuff, it was a moment that was perfectly timed — the introduction of hey, here I am.

Moore: Thank you, Karin. Could you then tell us a little bit about the kind of things that you do for Mad in America?

Jervert: More and more, as I’ve settled into the Arts Editor position, I have realized that really all I am doing at Mad in America is creating opportunities for people with lived experience to share their stories and to facilitate the feeling of worth and the validity that I feel for a lot of psychiatric survivors. The validity and worth of our personal lives or personal experiences have been stolen from us and I’ve experienced that personally.

So, I think that’s the core of my work at Mad in America. Although I’ve done other things, such as the Suicide Hotline Project and things like that, but more and more—because I’m an artist, through and through, that’s the core of my work. I was born this way. I’ve realized more and more that my goal at Mad in America is to present as many opportunities as I can for people to tell their stories and feel safe doing that and receive feedback that their life matters and their story matters.

So, the work I do is I manage the gallery, which is always an open call. Anybody can submit at any time to that and then there are several other projects like online exhibitions that are separate from that that we do periodically. So they’ll have themes like we have one running right now around Beyond Labels and Meds: What It Feels Like to Be Me, which is the teen focus for teen artists.

So, expanding a little bit more the arts content that we do around that stuff, it’s a goal.

Moore: Karin, what you add to the site, what you bring to the site is so important and so needed, because we know that Mad in America has been a place for survivors to voice, their experiences and what they’ve been through, and that kind of thing, but not everybody wants to write. Some people really do want to express themselves through music or through art, or whatever it might be. So, it’s pretty incredible to see the artworks that people send to the site and through you, they get to express themselves in an artistic way. That’s so important, isn’t it?

Jervert: Yes, absolutely. In the end, I think a part of that becomes an access issue. Some people can do some things, some people can do other things and if one person can’t necessarily write but can draw, there is a level of accessibility that opens up for that person. So, making sure that there is just this open opportunity and an open invitation for all kinds of artwork is important, I think.

Moore: So, for anybody listening that did want to know more, how can they actually submit art to us? How would they go about doing that?

Jervert: If you’re on the Mad in America site, under the Editorial menu you’ll see The Arts tab. There are links there on the top of the Arts Corner page, you’ll see Submit Here.

Basically, just give us the title. You can write a little bit about it if you want to tell us a little bit about the theme of the artwork or anything like that. If it’s poetry, humor, we do memes now too. So you can submit memes and artwork.

We’re trying to figure out a better way to do music, original music, as well. So, we’re working through that, but you can submit sound files as well. So, performed poetry or even original music. We’re figuring out better ways to present that.

Moore: I am so grateful for everything you do for Mad in America, but I am so sorry that you had to go through the experiences you did in order to find Mad in America. 
That’s difficult to contend with, isn’t it, that people are having to endure such horrible things to then find a tribe and a community that they can express through many different ways, but I’m also glad that Mad in America exists to allow people to express those things.

Jervert:  I think that in the end, what is so essential about Mad in America and why I love being here and I love working with all of the people here is that we all share that vision. We have been so silenced and Mad in America provides a way to speak, a way to share, and it’s so, so important.

Moore: I must also say Karin that I think you’re being too modest. You’re not just the arts editor, you do a load more of work for Mad in America, really important behind-the-scenes stuff and work with our global affiliate partners and anybody that knows anything about these kinds of sites knows that behind the content, there is a whizzing machine of stuff that needs bolts tightening and leaks fixing every now and again. We depend on that and it’s a really important part of having the content front and center, isn’t it?

Jervert: Oh, yeah.  I think that was one of the great things about when I came to Bob and said, hey, here I am. I had web design experience, web management experience, the social media experience. So, I was happy to use those skills towards Mad in America’s mission and the affiliates are just a wonderful group to be working with. I enjoy that quite a lot, being able to work with people around the world with similar visions and help them get started by helping them launch their sites. As you said, we’re like a little tribe and we meet every month and talk and go over things. It’s like all the things I do for Mad in America, I am super-honored to do, but I always start, I guess, with the arts editing because the arts are the love of my life.

Moore: Before we say goodbye, Karin, was there anything else important for people out there to know about Mad in America or know about you, or know about the work that you do for Mad in America?

Jervert: One thing I was thinking about was when we run into media outlets in the world right now, it seems more and more that the neutral is becoming not offending sponsors or not offending mainstream culture, that’s become what we call unbiased — that we’re not offending mainstream.

I think Mad in America is important because it doesn’t fall into that groove. It says, we’re standing outside of that and we’re going to operate with the knowledge that it’s important to highlight content that is up against the mainstream and you just don’t find that as much. I think Mad in America does an amazing job with that and bringing information to the fore that like me can save people’s lives and has saved many, many people’s lives.

I think the last thing I’ll say about Mad in America is I’m so grateful for what Mad in America is because I get emails all the time saying, “Mad in America saved my life,” and I feel similarly.

Moore: Absolutely, me too. Karin, thank you so much for spending a bit of time with me today to talk about how important this all is and what you do, and equally, I think that we’re tremendously lucky to have you on board with us. So, thank you for all you do.

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