On the Mad in America podcast this week we have Robert Whitaker with us to answer questions sent in by readers and listeners. Thank you to all of you who took the time and trouble to get in touch. You sent some great questions and on this and our next podcast, we will be talking with Bob about Mad in America, the biopsychosocial model, the history of psychiatry, pharmaceutical marketing, and issues with psychiatric treatments including psychiatric drugs and electroconvulsive therapy.
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 again for the Mad In America podcast, and thanks for spending some time answering reader and listener questions.
Robert Whitaker: It’s nice to be here again. Thanks for inviting me.
Moore: The first batch of questions are around the theme of Mad in America itself. Carina sent in the first question and she asked, could you tell us how MIA got started and what your role was in getting it underway?
Whitaker: After I published Anatomy of an Epidemic, I began hearing from people who wanted to talk about what it meant for them, both from people with lived experience and from prescribers. At that time, I already had a personal blog based on my first book, Mad in America, and I began running other blogs. Then it became obvious that it would be really helpful to have a website to provide a forum for people with lived experience to talk about their experiences and provide a forum for people, including prescribers, family members, or activists, to write about their thoughts about how we might change psychiatry.
And, of course, Anatomy of an Epidemic is really a story about how we as a society have organized ourselves around a false narrative of science. One of the key things in terms of reforming or rethinking psychiatry is to provide the actual research to the public. What is known about drugs and what is known about the validity of diagnoses, that sort of thing. It became evident that it would be useful to have a website that provided those three things, a forum for personal experiences, a place for blogs, and research news.
I had known Kermit Cole ever since I published Mad in America. Louisa Putnam wrote to me after Anatomy of an Epidemic was published with some questions. The three of us got together and said let’s start a website, and it was founded by us three. It was a joint project and it launched in January of 2012.
Moore: Looking back now, are you surprised with the way that Mad in America has grown over time? When you started out, what was your vision for the website?
Whitaker: I didn’t really see it growing, and there wasn’t a long-range vision. It was sort of a need at the time with those three elements in mind and really nothing more than that.
We started it, by the way, as an all-volunteer organization. Everybody was putting in their time. I don’t think I had any vision of what it might turn into with this number of people contributing and having all the different elements we have today. The only thing I can say is that from the beginning there was a sense that we would be very agile and open-minded to new possibilities precisely because there wasn’t a real vision for how to expand it. It was just, let’s see how this goes and let’s see what we can build.
Moore: So on a similar theme, an anonymous person asks the following: Mad in America has been going for 10 years; can it keep going for another 10?
Whitaker: Putting this in context, from the beginning there was the sense that we would be an alternative media because the mainstream media is not a reliable narrative of the actual science. And that’s what we’ve become.
You can’t find what’s on Mad in America anywhere else on the web in terms of the information about drugs, research, news, and the variety of opinions and personal stories. We’re now 11 years in and I think we occupy a very important place, not just in the United States but globally, in terms of helping society rethink and consider other possibilities and to do so in an evidence-based manner.
I think it’s important that we continue. However, I will tell you there are challenges and the biggest challenge is financial, frankly. Right now, as you know, we’re hitting a bit of a crisis. We’ve expanded to a place that far outstrips our donations, so we have to rethink how are we going to keep on funding this work.
I can imagine it keeping on going for another 10 years, but we now have this very real challenge. How do we fund an alternative media that can’t tap into any of the usual sources for funding? Even grant sources, because grants, by and large, go to those that are close to the mainstream idea.
Yes, I hope we’ll stay alive for another 10 years, but it’s not easy being an alternative media and finding the funding to do what we do.
One of the things we’re considering now is adopting a subscription model. Under the subscription model what will happen is we’ll have some of our content where, in order to read the complete article, people will have to subscribe. Our thinking is that it will be a minor fee like $5 a month, maybe $40 a year, and we’ll provide some other benefits like free access to all MIA webinar events. And we will include a free option for subscribing. If anyone can’t afford the subscription they can write to us and we’ll set them up as a free subscriber.
What we want to do is make sure that everyone, no matter what their resources, will have full access to all our content.
Now, this year we’re going to have something like six million unique visits to our site. Hopefully, we can convert those visits into a solid subscription base. If we do that, we should have the resources to continue to expand our original journalism, that sort of thing.
Moore: Another anonymous question. Are you ever worried that Mad in America’s reporting and blogs might cause harm? To give a little bit of context here, a few weeks ago Allen Frances on X (previously Twitter) claimed that Mad in America advises people to go off their drugs, which of course is not true. But that’s one example where someone used social media to try and cast aspersions on what Mad in America does.
Whitaker: This was a claim used to shut us down right from the beginning and it goes back to when I published Anatomy of an Epidemic. That was a book that told of how, when you look at the long-term effects of psychiatric medication, you see a form of treatment that worsens aggregate outcomes. You see that people are more likely to become chronically ill with long-term use and more likely to become functionally impaired. Now the very first review that was published five minutes after midnight on publication day accused me of doing great harm with this book. The reviewer likened me to a South African dictator who by virtue of denying AIDS had caused hundreds of thousands of people to die. This book was positioned as a harmful book right from the beginning.
After that review ran, by the way, in my hometown newspaper, the Boston Globe—that’s a great thing to see in your morning newspaper—I had radio interviews cancelled, and frankly, no other major newspaper reviewed the book.
Now we do know that going off drugs can be very risky. That’s a function of being on the drugs in the first place more than due to the disorder. But what’s our job, and what does society need? Society needs informed consent around the use of these drugs. The harm that has been done is by a profession that doesn’t provide informed consent and a media that doesn’t dig into what the research literature actually says. That’s the harm being done because that has led to a misunderstanding of what the drugs do. That has led to many people being on the drugs long term when clearly short-term use would be much better, or even trying to forego initial use. So you have to go back to the initial source of harm.
By the way, all the data says that with this new disease model of care, the burden of mental disorders has gone up. Outcomes have worsened. That’s a story of great public harm. Unfortunately, what is needed is an alternative media that provides informed consent, and that means providing information about what drugs do and what are short-term effects, what are long-term effects, and that’s what we provide.
Now, I will say we’ve heard from so many people who say this information has given them a new life, a new understanding of what happened to them. That’s a story of great benefit from informed consent.
Do we advise people to go off drugs? Never, ever. In fact, if you read Mad in America, it tells of how perilous and how difficult it can be to go off the drugs, and that you may experience difficult withdrawal effects. We never advocate for any particular mode of therapeutic action. We’re just trying to give people the information they need to make informed decisions.
Anybody like Allen Frances who says we’re harming people, you just have to say to yourself, oh, these people do not believe in informed consent. They believe in information being kept from people so they will keep on taking their drugs.
Moore: Next another anonymous question. Mad in America’s mission is to serve as a catalyst for rethinking psychiatric care in the United States and abroad. What would need to happen for you to consider that mission fulfilled?
Whitaker: In a way, I think the mission is happening and the fulfilling of the mission is happening. If you go back 12 years ago and look at the narrative that was spreading throughout the internet and even into mainstream media, it was very different. The chemical imbalance story was still alive then, the disease model was still alive, and there was very little talk in the public media about drug withdrawal effects. There was very little talk about how in essence the whole disease model narrative had fallen apart. Now here we are 12 years later and there’s increasing discussion about withdrawal effects. There’s an acknowledgement even within the profession that the diagnostic categories lack validity. There’s even an admission now that there has been no improvement in outcomes. Now, they don’t want to say that outcomes have worsened in the last 40 years, but there’s that acknowledgement of “no improvement.” Then there are calls for radical change coming from the top, and I’m speaking specifically of when Dainius Pūras was the United Nations Special Rapporteur for Health, he made these calls, and it was a call that was basically consonant with what we have been advocating through our reporting.
Of course, the World Health Organization has twice now issued 300-page documents saying we need a radical change away from the disease model and towards a human rights model, one that recognizes that there are social determinants of health. Disorders don’t just occur inside the individual but in the in-between spaces and in how society organizes itself. These are all themes that tell of a new narrative and these are all themes that we have been advocating for a long time.
Now the question is, will the mission ever be done? Even as these calls for a new narrative have come forth, and even as they’re gaining a foundation in the general public, the form of care hasn’t changed. Forced treatment is on the increase. It’s still basically drugs, drugs, drugs, drugs. There’s a sense that in order for the mission to be accomplished you’d have to have a new storyteller, not psychiatry, having authority over this domain of medicine. You would have to have a larger group recognized by society as the storytellers for the narrative we should follow.
Is that going to happen? I don’t know. Medical authorities have a lot of established authority in our society. It’s really hard to put them to the side and say these people shouldn’t have authority over this part of our lives. But if we have a new narrative in 10 years, maybe I’ll say mission accomplished and we’ll figure out what to do at that time.
Moore: A couple of other questions on Mad in America and its work before we move on. This next question is about working with others. This is from Mary who says some campaign groups have legislative efforts and track laws and regulations other groups lobby. Are there any ways that MIA could play more of an advocacy and change agent role? Is there any effort to join forces with others?
Whitaker: This is a good and important question. We are an activist form of journalism because, as you see in our mission statement, we do see a need to change the narrative. But we see our role as serving as a journalistic alternative media to serve that mission best. In order to retain our journalistic sense, we can’t lobby for anything. By the way, as a non-profit now we’re not allowed to lobby for anything, but we also don’t actually join forces with anyone else.
For example, as you know, I had a role in founding IIPDW (the International Institute for Psychiatric Drug Withdrawal). Now I’m no longer one of the board members, and this is part of the reason we can promote what they’re doing. In other words, we can serve as a forum for IIPDW to announce what they’re doing and as a forum for whatever research they come up with. But we don’t join with them in setting forth an agenda.
We need this editorial independence saying, here’s our job, we’re an alternative media, we’re not a lobbyist organization, but we will report on lobbying efforts. We’ll let people talk about their lobbying efforts in blogs but we’re a forum for change within a journalistic context.
Moore: This question is from Tara. Why are readers of Mad in America welcome to share our stories and concerns about psychiatry, but we are shut down if we try to discuss the similar shortcomings of AA-style 12-step programs?
Whitaker: I’m not sure I know why Tara feels shut down on this issue. In terms of personal stories, we let people talk about what’s been harmful to them and what’s been helpful to them. For example, I’m sure people have talked about help coming from 12 steps, and if people found it harmful and it’s a personal story that’s well written, I don’t believe we wouldn’t include that. There’s nothing saying that criticism of 12 steps is off-limits. In fact, criticism of any type of therapy is not off-limits.
This person can write to me personally, but there’s no sense that Mad in America wouldn’t publish a personal story by someone who’s had an unfortunate experience or a harmful experience with 12 steps.
Moore: This question is from Lynn. I would like to know why you think we’ve not seen a multidisciplinary approach to solving the problem of so-called mental illness. Why is there seemingly little or no interest in the areas of soft psychology, philosophy, sociology, religion, history, and even literature and the arts?
Whitaker: A great question. I think we need a rethinking that involves all those things, philosophy, an understanding of history, an understanding of literature and arts. That is what happens when you broaden into this multidisciplinary understanding. You get a different vision of what it means to be human than is present in the Diagnostic and Statistical Manual. Of course, the image you get of humans is that we’re very emotional creatures, we have difficult times, we have ups and downs and it’s not like we’re in control of our emotions all the time. Even psychosis can be seen as part of the human condition.
I couldn’t agree more that this is the sort of approach that we need to embrace or incorporate into a new narrative. Under our current disease model put forth by the American Psychiatric Association with its DSM, problems arise within the head, there’s something wrong with your chemistry and something wrong within the individual. When we look into these multidisciplinary approaches and we talk about the social determinants of health, we’re talking about things like food, exercise, shelter, equality, and all the things that we know are important. We’re talking about the environment because we know that human beings are responsive to their environments and we’re talking about creating better environments that help people stay well.
Now, this person is asking why isn’t that story incorporated into the mainstream narrative of the disease model. Because, very simply, the disease model was invented by the American Psychiatric Association because that was a model that gave it authority over this domain of our lives. That was a model that turned them into medical doctors in white coats, and that’s an image of branding that has great value.
The drug companies also love this model. The drug companies can’t sell drugs to provide shelter. They can’t provide a drug that provides food, nutrition, exercise, and socialization. So you have these two strong forces, a medical discipline, medical guild, that wants to maintain this disease model, and pharmaceutical money pouring into it.
It also feeds into this idea there are magic bullets out there that can make us better than well, they can alleviate all sorts of problems. We as the public have been conditioned to think that pills are the answer.
Moore: While you were talking, I couldn’t help but think about the articles that we share from our global partners in the Mad in the World global sites who often write and apply their cultural lens which is very different from the Western-centric lens. They are often talking about these issues in a much less medicalized way and it is fascinating to see how different that can be when a different cultural lens is applied.
Whitaker: This is one of the things in terms of our growth that has been so important. We now have 15 affiliated websites in 15 other countries. They come from Latin America and Europe, and now we have one in South Asia. Now there are two things to recognize about that.
First of all, you have to say, why are these affiliate sites springing up? It’s because the disease model is failing in every country after globalization of that disease model. The DSM was promoted not just through Europe but to Latin America, to Asia and so on. There is this growing grassroots resistance.
But the other thing goes exactly to what you’re saying. We can learn from each other, we can learn from what they’re doing in India, we can learn from what they’re doing in Norway, and we can learn from what they’re doing in Brazil. The sharing of information across our affiliate sites, across cultures, is a way to give readers insight into the many possibilities for rethinking these things, and seeing how other cultures have done it, taking inspiration from them, and learning from them.
That’s one of the things that Mad in America is now providing, and one of our real initiatives in the coming year is to further this exchange of information among all sites.
One of the things Mad in South Asia is working on right now is looking at the long history of traditional practices for treating psychosis in India. This is of great interest because when the World Health Organization did a study of schizophrenia outcomes, where did they find the best outcomes in the world? In rural India, which was still practicing these traditional practices. That’s an example of what we can learn from this Mad in the World network.
Moore: A question from DB who is asking about the biopsychosocial model. They say psychiatry insists it practices a biopsychosocial model, and so often expects the public to accept that as a given. But do patients report the same? Has there ever been a big study on psychiatric patients ranking the emphasis placed on bio/psycho/social in their experiences of psychiatric treatment?
Whitaker: The biopsychosocial model is basically a branding message from psychiatry. It’s a way for them to say, oh we’re not just pill prescribers. As much as anything, it’s something they say to themselves to feel good about what they do, because they know that there are psychological aspects and social aspects. But really, going back to the 80s, they started calling themselves psychopharmacologists, they said, we’re going to be prescribers of pills and we’ll leave this other stuff to the psychologists.
If you listen to patient experiences, over and over again they tell about how there’s little interest by psychiatrists in their psychology, little interest in social issues, and little support for even exploring them. Of course, in the United States, you get like 15 minutes with your psychiatrist, so they’re basically pill reviews.
Moore: A question from Larry, who says, has your work resulted in any kind of a vision for what mental health care in America or across the world could become if it were devoted to making people well? How would it finance itself? What range of practitioners would it include? What range of treatments would they use? What benefits to society might accrue?
Whitaker: Well, if we organized ourselves around a narrative that that did incorporate our understanding of human beings through literature, art, religious tracts, and we also understood that there are social determinants of health, then of course, we would have to do a couple of things to organize ourselves around that narrative. One, if someone was in distress, we’d have to think about how can we improve their environment. In what way can we provide support? But even beyond that, you’d have to say as a society, how do we better organize ourselves as a society to nurture the health of our citizens? It might be in terms of helping them engage socially, find meaning in life, improving equality, better housing, better food, better exercise, and so on.
I think the question is, will we ever have that? I don’t know, James. In terms of society rethinking itself, capitalism is a powerful force. Capitalism is about making money and providing opportunities for funneling money to certain people in positions of economic authority. There is a sense that our economic system is at odds with a society that nurtures mental health. Are we going to get rid of capitalism? I don’t think so.
That also goes to this question of financing. Our current psychiatric system generates huge profits. It is, though, largely funded by the government. For example, in the United States, if you look at spending on psychiatric drugs, about 60% is funded by the American government through Medicaid and Medicare. The rest is mostly funded through private health insurance that people are paying for. The problem is how do you finance a form of care where you’re not making a profit from it?
Now, if you could have a government that said, okay, let’s fund respite houses, or let’s fund medication-free care and let’s do so because it will save us money in the long term, that would be great because then you can make an economic argument for such change. So for example, if you can have this sort of good care right from the beginning that focuses on psychological and social determinants of health, and helps people get back on track and not become chronic mental patients, that’s a great savings, right?
Moore: This question from Laurie is along similar lines. Laurie says do you honestly think psychiatry could ever change to become an industry that truly helps people in society as a whole?
Whitaker: Here’s the problem in psychiatry today. To become a psychiatrist you go through medical school so you adopt medical thinking, and you adopt a medical identity and you’re invested in that. Now, you can want to help people, you can be a very caring person and go through that process and you can choose psychiatry for that reason, because you want to help people, and you want to help them get their lives back. The problem is, and again, I keep going back to this narrative, it’s not just a medical problem. It’s sort of a whole living problem.
What psychiatry would have to do is rethink itself. Rather than have authority over this domain of our lives, they’d have to give up their position as the leader of this whole story. Because right now, as the medical specialty, they’re on top of this whole pyramid we talked about of psychologists, sociologists, and so forth. They are the ones that, when the media calls up someone, they call up psychiatrists. Will they give up that power, that domain, that authority, that sense of self? That’s really tough. It’s tough for people who go through medical training not to see themselves at the top of that perch.
You know, we have a younger generation coming through that is more humble about being a doctor than before. More aware of a need for humility. There are more women doctors now in the United States so that old image of the male doctor that we all know is diminishing. I hope I don’t get in trouble with this, but I think the younger generation, and also women professionals, are more willing to share power. Could we move to a place where psychiatry sees itself as a part of a power-sharing arrangement? That’s the hope.
The thing that we’ve learned about mental disorders is that the brain, of course, is so complex and mysterious, and of course, the brain is attached to the body. You have to have humility about that to ask what’s going on with people who are depressed. What’s going on with them when they’re mad? What’s going on when they’re psychotic? That humility so often says we don’t know what’s going on, and therefore we have to be open to saying there might be a lot of different approaches. Remember, medical training is about saying “we know.” Psychiatry needs to adopt this position of humility saying “we don’t know, and how can we join with others in creating this sort of holistic system?” It’s a big ask. But that’s the hope.