What To Do With Advocates Who Refuse To Learn About Drug Downsides

Corinna West
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I get a lot of ideas from other advocates from online forums like the Alternatives Facebook discussion group,  where we have a gathering of about 750 psychiatric survivors who want to find non-mainstream ways to approach emotional distress. We started a thread about what to do about mental health advocates who refuse to hear about alternatives to meds, or Robert Whitaker’s message.  His ideas can be summarized as, “Medications help some people, but not everyone, and they may be increasing the amount of disability in our country.”  I sometimes call this approach the distress model, because I think one element many of us have in common is that we see emotional distress as temporary and transformative.

Right now, I need your help to spread the word and bump up the buzz about making this approach nationwide. Click here to see details of our revolution and help expand our Indiegogo funding campaign.

The Chocolate Fairy at a skate park in Kansas City sharing alternative to meds - like Chocolate!
The Chocolate Fairy at a skate park in Kansas City sharing alternative to meds – like Chocolate!

However, quite a few advocates in our country don’t know about this information, and their message can be summarized as, “Medications and labels are good, and if your life is messed up, get yourself a label and medication, and all will be well.”   I call these advocates disease marketers, because they seem to sell disease and medications and be unwilling tools of pharma.

When these advocates give out information about the benefits of pyschiatric medications and diagnoses, they don’t ever present evidence about alternatives to meds, or of people harmed by those labels and medications. I get mad because I feel like their message is killing my brothers and sisters. So I asked my friends how to handle those kind of people. All people quoted have given me permission to quote them.

Can You Talk to People Who Refuse to Talk?

Hannah Cohen: (one of our Wellness Wordworks bloggers) I don’t know if you can engage with such a person until they come around to a different way of thinking. Usually it’s based on enough life experience. I have a friend who used to be very pro-med and stuck in his life, while I was very anti-med. Then when I got sucked into the system and the “meds,” he went the opposite way – finally got off them. His life is great now.  My friend wasn’t a disease marketer, though. Those people seem to have even more invested in spreading the “disease gospel.” I suspect they have a deep-seated emotional reason for doing so.

 Pamela de Rossette:  Hey – can’t win em all —

Yvonne Z Smith:  Good luck. I dont fight those battles anymore. You should spread the truth.  That is the best you can do.

Debbie S Andersen:   It seems like the thing you both share is a desire to educate your peers.  Maybe suggesting a conversation between the two of you as advocates, about where you agree and how each of you came to opposing conclusions about illness/label/meds, would be a way to begin.  I experienced a sense of empowerment in hearing that what I was experiencing had a name and a treatment, and it was hard to let go of that until I saw how the name and treatment were actually harmful and disabling. Good luck – working with folks who I fear are doing harm through mis-education is a huge challenge for me, too.

Make the Different message as Public as Possible:

Bringing people onboard with ideas for alternatives to meds is a recruiting process, like me trying to get programmers at Startup Weekend KC
Bringing people onboard with ideas for alternatives to meds is a recruiting process, like me trying to get programmers at Startup Weekend KC in November, 2011.

Chris Foulke:  I have held three very positive panel discussions: two at our local library, one at a church where public meetings such as this are held. The topics were ‘Nutritional Medicine and Psychiatry: What, Why, and How?”; “Nutrients Nourish the Brain: Alternative Mental Health” and another on sugar addiction, which has some profound implications for the brain.  You could hold a public forum on Alternatives in Mental Health.  Don’t even invite a drug company rep.  I always give a warning not to suddenly, extemporaneously go off of one’s meds.  That it is a serious thing that should be approached carefully, with planning, guidance, and support. It is easy to be brainwashed by the atmosphere, propaganda, social net, and the drug itself, whether it’s cocaine, meth, or a psych drug with all the backup provided for those antagonistic or pain-reducing chemicals. Guys in particular fall for the science trap.

SD: People have to learn for themselves what is good for them. Why do you think there are people still smoking cigarettes despite all the evidence that says it’s terrible for them. You can’t force people to stop smoking, or stop taking medication. Free will, and right of choice to do what we want as long as it isn’t illegal, exist in our society. So all you can do is educate, as often as possible, with a smile, the benefits of eating healthy, exercise, and taking vitamins. There is so much behavior in our society that’s detrimental to our health, but change is a slow process in a society that is stuck in old ways of thinking. Have patience and keep speaking. That’s the best you can do.

Yvonne Z Smith:  All we can do is sometimes get the messege out about recovery and positive things that can help. Otherwise, you will become a target of the dark forces who truly believe the only path to recovery is medication compliance. I speak painfully from personal experience. If you can be part of a forum, that might be helpful. People do get “temporary relief from some symptoms with medications”. It’s the lack of informed consent and access to other strategies like WRAP, intentional peer support, and trauma informed care, that is dangerous.  Don’t attack people personally! Be positive; give alternatives!

Corinna West:  For me, I think the number one reason this guy gets my goat is that I’ve made multiple attempts to share the research on medications, giving him a copy of Whitaker’s book, sending emails with articles attached, sending explanatory emails, etc, but he just refuses to engage with any of it.

Trying to be persuasive and selling my ideas at a psychology conference in Chicago
Trying to be persuasive and selling my ideas at a psychology conference in Chicago

Maybe I’m enough of a scientist that I don’t understand someone who refuses to look at a science problem that means he is harming people, and not helping them. But also I’ve given this same info to mental health providers and feel OK giving up on them ever getting the message, but this guy is a peer. Maybe science just scares people without that background, but enough of this stuff has been presented in basic terms that it should still be accessible. I think the main problem is that the Whitaker message is too complex and challenging to be delivered in social media-sized bites.

Hannah: I know that many times I just haven’t had the concentration span or ability to think through materials. When you’re really drugged up, it makes it harder. Maybe he just can’t think through these ideas at all? Or doesn’t want to?

Choice and Forced Treatment Are the Key Tests

Frank Blankenship: If he doesn’t support choice, that is a very serious matter. I know some advocates promote forced treatment. Doing so is a bad thing as far as I’m concerned. Some people neither want, nor do well, on psych drugs, and if he can’t see their side of the matter, he can’t be much of an advocate. I’m saying you’ve got people you reason with, but at a certain point, with a certain individual, you might realize that reasoning won’t work. Should he realisze that mistakes can be made in the mental health system, just as they are made in the criminal justice system, then you’ve got someone you might be able to work with.

Susan Schechter:  I think some people just have to find their own way in their own time. It took me a long time, and I’m suffering from it. My family still thinks the meds caused no damage, even though they’ve left me unable to walk pretty much unaided and kidney failure. (And let’s not talk about brain damage from ECT). I do know from personal experience that the friends I had who were like your friend are now going over to our side. I think most people will get there on their own, just need to take time for them to have the “aha” moment. Don’t give up on him.

It's easy to beat someone but very hard to win them. Here Grant Williams spits his ideas at Bold New Poets at the Unicorn Theater in Kansas City.
It’s easy to beat someone but very hard to win them. Here Grant Williams spits his ideas at Bold New Poets at the Unicorn Theater in Kansas City.

Corinna West: This guy keep saying he doesn’t inform people of what to do, just lets them make their own decisions. I tell him that people only get one side of the story, so they’re not able to make truly informed decisions, but he doesn’t see this.  Maybe the reason it bothers me so much is that I’m insecure in how I see my career going, and this guy is making more money than me at the moment.

Debbie S Andersen: Nice job on the conversation edit. I think getting to “why it bothers me” is necessary self reflection, and that is part of the answer to “how do I engage someone who doesn’t hear me?” Feel free to repost my comment.

Roe Royal:  Today is a hopeful day because of this question and the responses. As in any avocation, field or work.. We encounter meaningful situations which challenge us and those around us.  Yes .. What do we do?

Many people who have been before us, many who are presently with us, and those who will lead the future have.. shall .. And will ask themselves this same question. Perhaps, if you asked this person directly to tell you their belief or how they define the word or actions of an ‘ Advocate. ‘ if you haven’t covered that yet, you may discover there within their own worldview the whys and wherefores of their actions. Advocates of any movement during any time in history held differing views.

Your passion, efforts, concern and willingly to share is a glowing testament for all who have struggled with sharing free choice and diverse approaches. Know that you have contributed to this guy.  Whether they engage with an open mind ~ Time will tell.

Corinna: And of course, please help us fund our Indiegogo campaign which only has 20 days left: Connect Power crowdfunding on Indiegogo.

What have you found to work when people won’t engage with the research we know?

6 COMMENTS

  1. An interesting example of the science mindset and the assumptions of cause & effect reasoning, Corrina? Are you examining “his” reactions from an objective, cause & effect viewpoint, without an awareness of emotional systems and hidden needs, in the relationship between you?

    As you say;
    “For me, I think the number one reason this guy gets my goat is that I’ve made multiple attempts to share the research on medications, giving him a copy of Whitaker’s book, sending emails with articles attached, sending explanatory emails, etc, but he just refuses to engage with any of it.

    Maybe I’m enough of a scientist that I don’t understand someone who refuses to look at a science problem that means he is harming people, and not helping them. But also I’ve given this same info to mental health providers and feel OK giving up on them ever getting the message, but this guy is a peer who has done a talk on “Defining the Odds.” His typo not mine. Maybe science just scares people without that background”

    Maybe hidden emotional systems scare people without that background understanding? Consider;

    “Emotion and Emotion Systems Theory:
    Philosophers have pondered the meaning and nature of emotions for centuries. The study of emotion in organizations is primarily a 20th century phenomenon. Until the 1980s, most studies of emotion in organizations were confined to issues of job satisfaction and motivation. Hochschild’s (1979, 1983) explorations in the sociology of emotion were a milestone in looking at emotion in organizations. Since then, the concept of organizations as emotional spaces has been gaining increasing acceptance (Bolton & Boyd, 2003).

    Hochschild referred to her work as “emotion systems theory” because it is comprised of “a system composed of individual acts of ’emotion work,’ social ‘feeling rules,’ and a great variety of exchanges between people in private and public life” (Hochschild, 1983, p. ix-x). Emotion management is defined by Hochschild (1983) as the active attempt by an individual to change, in either quality or degree, an emotion held by that individual. She identifies two primary types of emotion management-suppression and evocation. Suppression of emotion occurs when an individual tries to eliminate or, at the very least, subdue an emotion that is present. Evocation is just the opposite. This type of emotion management occurs when an individual tries to draw forth an emotion that is not present.

    The second major component of Hochschild’s work is that of “feeling rules” (1979, 1983). Feeling rules are the “socially shared, albeit often latent (not thought about unless probed at)” (Hochschild, 1979, p. 563) guidelines that govern how individuals wish to feel. They guide the expression of emotion, and they guide the attempt to internalize what is an acceptable emotion (as defined by the situational rule). Feeling rules are embedded within a culture and thus constitute an important part of the affective culture of the organization.”

    http://zencaroline.blogspot.com/2010/11/emotion-and-emotion-systems-theory.html

    IMO Its hidden feeling rules which govern our reactions, and no cause & effect science approach can understand these rules, without an appropriate education? Perhaps your too much of a scientist to be able to understand, just how this guy gets your goat? Do you presume a cause & effect deduction in your external observations of “objective” facts, without awareness of hidden emotional “affects” within? For me, what seems to be left out of your observations, are the hidden emotional needs you both have, which cannot be addressed with objective logic.

    Warm regards,

    David Bates.

  2. Corinna,
    I wholeheartedly agree with David. You won’t win this one by approaching the “problem” as if it were merely an exercise in scientific logic. It’s not. It’s like trying to tell another person to lose weight and giving them dietary advice, or to stop smoking because the scientific research shows it’s detrimental to their health. People have complex emotional needs and all we end up doing is making them dig their heels in. I wouldn’t lose sleep over the person you are describing. There are plenty of people out there who are responsive to your message, some on a logical level and some on an emotional one.
    Best regards,
    Rossa

  3. I generally try to get interested in how they came to their conclusions, and tailor my response appropriately. I’ve long ago learned that most people are not swayed by science per se. A lot of people tend to be swayed by “authorities” whom they believe to be “scientific” and would like to rely on those people for information without having to figure it out themselves. So I have to address the question of “could the authorities be telling you incorrect information?” before getting to any meaningful discussion of psych drugs. Of course, this discussion is positively TERRIFYING for some people, and there are many who simply can’t process the possibility, even when I share with them that receiving medical care is the third leading cause of death in the USA, primarily due to death from properly prescribed and administered prescription drugs.

    Then there are those with a vested interest in believing in the “disease model” hypotheses, such as people in the field who have built their practice on this assumption, or parents who need to feel protected from guilt feelings for having possibly failed their children in some way. This is a very different discussion, and also often leads to barriers that can’t be overcome.

    Bottom line, people believe what they believe for a whole lot of reasons that have nothing to do with science. Finding out how they make the decision what to believe is an essential first step in either understanding how best to approach them, or realizing that they will simply not be receptive for reasons we can’t control.

    —- Steve

  4. Well, regulars around here already know where I stand on this issue. Reasoning didn’t stop then nazis, nor did people just stand around waiting for them to have an “aha” moment as someone put it. People should not have a right to exercise their opinions when it is causing harm to people, especially to children.

  5. Deprogram them !

    When you deprogram people, you force them to think…But I keep them off balance and this forces them to begin questioning, to open their minds. When the mind gets to a certain point, they can see through all the lies that they’ve been programmed to believe. They realize that they’ve been duped and they come out of it. Their minds start working again.

    http://en.wikipedia.org/wiki/Deprogramming

    What is Deprogramming?

    Exercising and re-training the mind with the intention of abandoning or relieving ones self from rigid beliefs that were developed from outside sources… Ex: really good marketing !!!

  6. It is a difficult question Corina, and one that everyone who is engaged with this work eventually comes across. How do you talk to someone who believes everything the Dr’s say when you have such good evidence that what the majority of what the Dr’s say is rubbish?

    Well I say just talk to them and explain your point of view, see if you can chip away at their believes, even if it is in only one little area, and then go away and find people who you can talk to. Then get audacious in your actions so more people find out about what we have to say.

    Often in social movements we concentrate on those who oppose us far too much. A lot of them will not change. But they rely on the rest of society for their view to flourish. So to win we need to concentrate on all those others who are undecided and see if we can convince them of our viewpoint, or or those who are believe a lot of what we say and see if we can move them towards what we believe. The civil rights movement didn’t win by convincing the Ku Klux Klan to become radical anti-racists, they won by convincing the majority of the population that racial segregation is wrong and that black people deserve full civil rights.

    When a large enough chunk of the population moves towards what we believe then we have a chance of winning, because then almost no one will be listening to the people you are talking about in this article.

    Essentially I believe this is what Robert Whittaker is trying to do. He is going round giving talks and promoting his book where-ever he can and people who believe in his work have started this website so that a broader range of people can debate these issues and then, with luck, reach out to other communities.

    So good luck in being loud and audacious