Fireworks and heated debate were expected by many when Robert Whitaker recently addressed a group at the National Alliance on Mental Illness (NAMI) annual convention in San Antonio, Texas. NAMI has historically been criticized as a ‘front’ for pharmaceutical companies and Whitaker has been painted by many as ‘anti-psychiatry’ and ‘anti-medication’. The views are understandable. There were several pharmaceutical companies sponsoring and exhibiting at this year’s NAMI annual convention and the organization still receives funding for its operations from pharmaceutical companies, and Whitaker’s work is openly critical of both the American Psychiatric Association and the mainstream approach to psychiatric medication.
So why was Whitaker invited to the national NAMI convention and how did it turn out?
According to outgoing NAMI national Executive Director, Mike Fitzpatrick, “Having Bob Whitaker here was important. It is important to have dialogue about the use of pharmaceuticals. NAMI wants to make sure this dialogue happens. The NAMI tent is big enough for many perspectives.”
Whitaker was introduced by the President of the NAMI Board of Directors, Keris Jan Myrick, to a standing-room-only crowd of over 325 people. He started by explaining what led him to uncover the information that ultimately led to his books Mad in America and Anatomy of an Epidemic. He was seeking to confirm conventional wisdom about treatment for mental illness when he wrote an investigative journalism piece about a clinical trial that was taking people who had been diagnosed with schizophrenia off of their medications to see how they fared. Convinced that this was abusive, he sought to expose what was happening. Through a series of events, he came upon information that pointed to a story that was not being told. One study that he found was by the World Health Organization and it included the following statement: “Living in a developed country is a strong predictor for poor outcomes for schizophrenia.”
This line was pivotal for Whitaker. “People claim that I am ‘anti-psychiatry’ but the truth is that this sentence is why I started studying all of this. I thought it was shameful that we should have such poor outcomes.”
After explaining why he got interested in this topic, Whitaker went on to share research for his talk entitled “The Case for Selected Use of Neuroleptics.” Here is the description of his talk from the NAMI convention brochure:
“The usual standard of care for prescribing antipsychotics for people diagnosed with schizophrenia and other psychotic disorders is to use the drugs immediately and, at least with schizophrenia, to maintain use of the medication. However, a review of the long-term outcomes literature reveals that a selective-use protocol, which would involve using the antipsychotic medications in a more limited fashion, would produce superior results. Such a protocol would involve treating some first-episode patients without antipsychotics for the first few weeks, as well as supporting some patients, after their initial use of the medications, in going off the medications. Northern Finland adopted this selective-use protocol in 1992, and that region now has the best documented long-term results in the western world.”
Throughout the talk, Whitaker emphasized the importance of slow withdrawal and highlighted how most studies only look at abrupt withdrawal which can cause reactions that look like ‘symptoms’.
After presenting overviews of the research, Whitaker asked the question, “Do we as a country want to embrace a paradigm of care that is expensive, ineffective and – for many – harmful? Or, do we want a paradigm of care that supports people who want to come off of antipsychotics with help and support?”
Continuing, he said, “I am coming here with a story that is upsetting. I think NAMI should be congratulated for having me here.” There was a loud round of applause.
At the end of the presentation, Whitaker opened up the floor for commentary and questions.
The first was from a woman who brought up a point about the time that is needed for people to be able to reduce medication safely. She pointed out that in the 1950s, people could stay in the hospital for longer periods of time. Her experience was that people stay in the hospital for 5-7 days and come out with a prescription. In a distressed voice, she asked what is to be done about the information Whitaker presented.
Whitaker responded, “We have so much wrapped up in all of this. We believe that meds can stabilize people fast, so we discharge people quickly. We have put all of our eggs into one basket: meds, meds, meds. As far as ‘what do we do?, we have to continue to discuss this, to look at the painful things…. NAMI is a powerful storyteller in our society. If NAMI discussed this story, it could be game changing. We need to have places where people can go. The original meaning of the word asylum was ‘refuge’, and in the early 1800s, Quakers built asylums in the United States that provided people with a healing environment — fresh air, exercise, good food, and so forth. And historians who have studied Quaker asylums have concluded that their outcomes were better than we have ever had since.”
One man, a NAMI member and member of a NAMI consumer council, spoke up, “As a person with 37 years of lived experience with schizophrenia, what you are saying here about the poor outcomes has borne out in my life. I came up in the time of Thorazine and all those drugs. They were terrible. They were only good for eight months and then you had to find a new one. When I would try to stop taking them abruptly, I would become terribly psychotic, so I had to stay on them. Drug companies don’t look for what they can cure; they look for compounds they can sell you forever.”
Another man spoke of his son who started having auditory and visual hallucinations at age seven. He said that he and his wife were educated people who sought out every option and found that they ultimately needed to opt for medication. He said that even among people in the NAMI organization, they felt that their choice was controversial. He told Whitaker that he appreciated him coming to speak in such a balanced way and that it would be helpful to NAMI and people like him if we could come together and continue to discuss this topic in a balanced way with the goal of finding a unified voice to speak to legislators.
One of the audience members said he had come expecting that it would turn into a “firefight,” but that hadn’t happened at all. Whitaker said, “We all have the same shared interest, to do right by people that we love.”
One woman said of Whitaker’s website, www.madinamerica.com, “I’d like to thank NAMI for having you here… One thing I notice about the website is that people who are attracted to write there tend to be a self-selected group who really hate psychiatry. This inability to speak with a united voice is damaging our community.”
Whitaker said, “Sometimes I am uncomfortable with the overall sentiment on the website, in that we don’t have as much diversity of opinion as I would like. (ref: www.madinamerica.com). It’s a work in progress. We need to have a place for all voices. We want to have voices of people trying to grapple with what all of this means. It doesn’t have the breadth of writers we want to have. In the beginning, we had invited psychiatrists and others with more mainstream views, but critical comments by readers, which at times were overly personal, chased them away. We didn’t have the resources to manage comments so that the discussion remained civil. We’ve gotten much better with that.” He emphasized that historically, the voices of people being treated for mental health issues were not represented. “We’ve opened our website to that voice.”
The following day was the closing event and the annual NAMI business meeting. It was called, “The Many Faces of NAMI.” Myrick addressed the crowd and spoke of the importance of including many voices and hearing all perspectives. “When ‘I’ is replaced by ‘we’, illness become wellness.”
I for one am ready for more ‘we’ in this dialogue. I am a member and employee of my local NAMI affiliate and an avid reader of the Mad in America webzine. On a daily basis, I hold the tension of many points of view and constantly seek to find the places where these two tribes merge and where we can have more influence together than apart. I am seeking more ‘we’ on this journey of grappling with all of this. Are you in?