The Big Lie: About Us Without Us

I know of this attorney in Virginia. His official title is Regional Human Rights Advocate. In such a capacity he serves people in the mental health system in that state. He has been known to give presentations at outpatient and inpatient facilities around the area. He has given presentations, inspired by Stephen Covey’s 7 habits of highly successful people, on what he refers to as The Seven Principles of Effective Self-Advocacy. Given that people within the mental health system often don’t understand the law, and their rights under that law, this kind of instruction can be a very good thing to have.

Often in some mental health literature you will read where people with psychiatric labels are referred to as “voiceless”. You will also see where they are lumped among what are referred to as America’s, or even the world’s, “most vulnerable citizens”. Are they actually “voiceless”? No, it’s just nobody has bothered to ask them about their wants and desires. Are they actually a segment of the world’s “most vulnerable population”? It probably varies from individual to individual. Given enough gumption, no, there are people who are much closer to death and eclipse than most of the people being treated, or mistreated, for mental health issues. The problem here then is one of these people wondering what the heck to do with those people.

There is a saying and slogan among people in the Disabilities Rights Movement that goes, “Nothing About Us Without Us!” When one claims to be speaking for other people, without those other people being present, we have to ask whose interests are actually being served. We don’t know whether this group or that group is truly being represented until we hear from members of the group itself. When any members of the group can express their own concerns, the need for an intermediary to express those concerns for them has vanished. Should such an prophylactic mediation persist, we have to question the motives of the intermediary.

There are many untruths in the current literature on mental health, but I don’t think there is any bigger untruth than this assumption that a psychiatric label magically takes away capacity, or perhaps, more pointedly, that a psychiatric label strips us of our connection to the rest of the human species. The implication is that somehow the very thing that makes a person human has been lost through the act of applying a label to that person. Humans can speak for themselves. They aren’t animals. The capacity to communicate, in fact, is the very thing that separates us from many species lower down on the evolutionary tree. People labeled “mentally ill” are usually not mute, nor are they incapable of intelligible speech.

The less people who have known the mental health system from the receiving end are listened to, the more distance the great lie that somebody must do their speaking for them gets. This is a dangerous lie. People are buried under this lie, real people. The great lie, in fact, takes lives. It takes the best of life, and it takes what makes life important. Your life is reduced to the words of a person who claims to represent you, and a person who doesn’t represent you in actual fact. He or she doesn’t think you should be speaking in your own words and from your own personal experience. He or she thinks he or she should be telling other people how to best respond to you. He or she has replaced you with a big fat lie.

Advocating for the suppression of people’s rights in the mental health system is often confused with advocating for the rights of people in the mental health system. When people who have endured the system themselves become advocates, no such confusion is possible. The system right now is incorporating the use of certified Peer Support Specialists into its operations. Sometimes these Peer Support Specialists are not nearly so rights savvy as they ought to be. We’re not talking patient rights, or even mental health consumer rights, either. Out of that kind of talk you get the right to treatment without a corresponding right to refuse treatment. We’re talking human rights. We’re talking life, liberty, and the pursuit of happiness. All three of these rights are jeopardized by that psychiatric assault known as coercive mental health intervention. When the voices denied these rights, have been permitted a chance to speak in support of these rights, then and only then will you know that progress is being made.

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16 Responses

  1. Para 5…the more distance…

    The increasing distance is a function of time. The longer the shrinks get away with what they do and the more power and cred they get, so the distance will increase. They don’t just want to keep up with population growth they want to diagnose a larger fraction. And they don’t just want to diagnose a larger fraction they want the sane to know that the mentally ill are more mentally ill “than was previously thought”.

    I think we’ve joked about this before. It will get ridiculous when they start claiming that 50% of the population are mentally ill. They’ve got more chance of achieving this if they can more effectively stifle the voices of their patients and cast dispersions about the mental health of sceptics. (Opening speech at taskforce meeting)

    Shrinks and government are exchanging cues. Our prime minister casts dispersions about the mental health of anyone who she finds disagreeable.

    • People who call opponents crazy because the opponents offend their views are no different than the people who sit on the right and pronounce other people’s behavior as “sinful” or “immoral”.

      • It’s true, BetaSheep, that politicians often use the “mental illness” label to slander one another with while running for office. Political commentators do the same thing with opposition targets. Outside of political office the “mental illness” label is used to slander people impacted by the mental health system. I’ve heard people suggest, and I think it true, that what we need to do is to run a ex-patient or two for political office. When an ex-patient can run for president of the USA, then I think we can safely say we’re getting somewhere.

    • Deinstitutionalize, that is, replace mental hospital/prisons with community treatment programs, and you’ve reversed and ended a trend that started more than 200 years ago, and that we could call the age of the mental asylum. I think the hospital system is a real problem, shrinks still serve as the overseers of this system. Further complicating the process of deinstitutionalization, now you’ve got the institution without walls to contend with. This is not just a matter of forced outpatient drugging although that kind of forced treatment is included. Now what we have is coercive treatment being enforced by assisted living facilities, group homes, and Assertive Community Treatment (ACT) teams. Obviously, it is not enough to just deinstitutionalize, you must also repeal mental health law because it is through mental health law that this division between mental patients and the rest of humanity is achieved, and people’s civil liberties and human rights are violated.

      The DSM revision process is coming under increasing fire these days, and I’m more amused by it than anything else. I’m afraid the uproar may die to a whimper after the DSM-5 is released in 2013. If it does, it will still be simmering under the surface, and waiting for the furor over a DSM-6. This matter of labeling social deviance of one sort or another “disease” has gotten way out of hand. The authors and revisers of the DSM can only be said to be getting the kind of flack they deserve, but they still aren’t getting enough flack. Expect more “mental illness” labels in the future, and pitch your copy, if you have one, into the trash. Controversy is good advertising as far as the American Psychiatric Association is concerned, and retired psychiatrist Allen Frances may wind up being one of the best ad man they’ve ever had.

  2. People who have been labeled mentally ill, whether mentally ill or not, do not have to wait to be “permitted a chance to speak” about anything. Those in a position to make themselves heard can go right ahead.

    It is only through their doing this and keeping to it that society will be forced to learn how to listen.

    • Definitely, GM. I would encourage anybody who has been in mental health treatment to call the media anytime they issue a news report about mental health care in their locale that doesn’t include the voice and perspective of somebody who has been on the receiving end of treatment, and to tell them that they don’t have the whole story. Silence is the way disempowerment becomes entrenched, and speaking out is the way we gain ground as a group. The appointed or self-declared mouthpiece is actually an indication of the lack of progress that has been made. The hired advocate from among us, one has to be a little leery about as well. There can be conflicts of interest that arise there, too, but it is a real improvement over the spokesperson who has never known psychiatric oppression first hand. The essiential problem is that you’ve got all these intermediaries who, rather than assisting people at reaching their goals, in actual point of fact are an impediment to the reaching of those goals. When people within the system gain power and position, those goals will be much closer to getting met.

  3. I think making a documentary is something worth doing. Or putting the word out to people to make their own mini-documentaries/statements on camera. Everyone can post them on YouTube. We can push for them to go viral by lobbying people we know to watch them and pass them on.
    Visitors can smuggle micro-cameras and recorders into institutions so people can see and hear what it is really like. And when people go to see their psychiatrists, they can record them.

    An idea I have for you is to buy a share in each of the big pharma companies. I know that goes against the grain, but as a shareholder you would have the inside scoop on what they are up to from a profit driven viewpoint. You only have to have the one share to be automatically entitled to attend any shareholder meeting and you will receive company reports and be advised of any strategic changes.

  4. A documentary made by survivors of the system, edited by them and presented by them. None of that ‘I am using my deep serious voice to talk about these people to show that I am compassionate and concerned and that they are crazy so must be treated like wild animals in the zoo’ crap.

    • Oh, there are documentaries, and there will be documentaries, but it’s a great idea, G. M. The problem with smuggling micro-cameras and recorders into institutions is that that would leave you open to litigation, the institution (and it’s prisoners) would be able to sue the heck out of you. You can’t get past the confidentiality laws for one thing. I know of instances where good films were made, but they were made with the consent of the institutions that was in turn surprised by the result when it showed that institution in a bad light.

      Part of the problem with pharmaceutical corporations is the problem of corporatocracy in the first place. We’ve got the Stock Exchange Casino on Wall Street to contend with where the house always wins. People become stakeholders because they want a stake in the product that is being sold. I, on the other hand, don’t want to advance the earnings of pharmaceutical companies one penny. The internet is a better and an easier way to access information, and more reliable information at that, than some lying companies sales blurp.

      There are plenty of ex-patients on You Tube right now. Suggested words for You Tube searches: mental health, mental health recovery, anti-psychiatry, psychiatric survivor, mad pride, tardive dyskinesia.

  5. I know there have been documentaries, but have there ever been any made solely by ex-patients? As in people being filmed and interviewed by ex-patients, the presenters being ex-patients, the results being edited by ex-patients, and the whole thing being directed and produced by ex-patients?

    I hear what you say about litigation. If it were produced in another country, what then? We see secretly filmed footage all the time of events taking place overseas. So if the footage were taken out of the country, to Canada or Mexico for argument’s sake and produced there, how could US litigation be enforced? It seems to me that the law protects institutions from interference as much as it protects patients’ confidentiality.

    The idea of a documentary that is as unbiased as possible is first and foremost; secret filming notwithstanding. Although, you know, a movie is better. That way the scenes people describe can be recreated without any issues about getting into institutions with cameras and it is not just ‘talking heads’. If ex-patients want to play themselves or their imprisoners, it can be a cathartic experience for them. The thing with a movie is it will be watched by more people and a wider cross section of society; providing it is a good movie, of course.

    Do you think there is anybody you know who would like to share stories, skills and ideas? Anybody reading this right now?

    I figured that might be your response about the share buying idea(!) The thing is this: It is not a “lying company’s sales blurp” that I am saying it would be good to get your hands on at all. That is what we get from them on a daily basis through company public relations teams. The information I am talking about is that which they share with their shareholders, who are in it for the money. There are things to be found in corporate presentations to shareholders that do not come out in day to day media, is what I mean.

    • Ex-patient is not psychiatric label, G.M. I would say there are films done by ex-patients in one capacity or another. There are certainly enough videos about Mad Pride celebrations out there, ex-patients are behind most of those. Ken Paul Rosenthan, the director of the documentary Crooked Beauty, featuring psychiatric survivor artist Ashley “Jacks” MacNamara, from what I heard is a member of the Icarus Project. Psychiatric survivor and poet, Leah Harris, has made a short video on the life of legendary psychiatric survivor activist Judy Chamberlin, and another short video on a crisis respite center in New York state, both of which I have seen. This is sort of a Do-It-Yourself kind of thing. Want to make a documentary? If we could get together, G.M., I’d be happy to work with you on the project.

      I’m kind of partisan, and I don’t really think there is any way to be completely unbiased about this type of thing. We’d have to represent one perspective or another if we’re not to look like guilty bystanders.

      When I said litigation was a problem, litigation is only the half of it. You’re not going to get away with sneaking cameras into an institution and filming. Litigation and, distribution considerations, would keep the film from ever being shown. Every patient in the documentary would need to sign a release, a consent form, and I don’t think you’re going to be able to get those. The law itself would keep any such film from being shown, and it would probably be suppressed entirely.

      We could certainly use a video activism website of sort or another. Have you considered taking a film class yourself?

      I can live much more easily without a share of their blood money. thank you, kindly. The truth about these drugs are things the companies must hide from their share holders as well. The kind of stuff that came out in the Zyprexa files leaked to the public a few years back. These researchers jockey stats to make harmful drugs look beneficial. They bury studies that don’t support their product, and they play up any angle that does. People, as a rule, don’t know any better. Zyprexa recently lost its patent but, not to worry, Eli Lily is busy pursuing more drug research in the interests of developing another big seller on the market. No, the problem is the drug, drug, drug paradigm, and buying into it is not the answer. I’ve got this sign I always want to be carrying, and it says the truth, “Big Pharma Kills!” I don’t want any share in their blood money what-so-ever. 2 wrongs don’t make a right, and neither do 15,000,000 just to throw a random figure up there for you. Buying stocks in drug research and development is compounding a wrong, and I, for one, won’t have anything to do with it.

  6. I hear you. I baulk at it myself for exactly the same reasons.

    I do not think of ex-patient as a psychiatric label – I am not sure what you mean.

    I think you could get the footage and get it on to the Internet, but it would be a lot of hassle and yes, it might be suppressed. A movie is the best way to deliver scenes of the interactions we know go on. There would be no restrictions on what could be shown.

    A film course would be good. Maybe a short documentary is the way to start. Realistically, I think that I can take a look at this next year. Yes, thank you for your offer, I shall take you up on that.

    I shall have a look at the ones you mentioned in the meantime.

    • Ex-patients are just like everybody else. Some of them could even be film makers. I think it would be a little intimating to interrogate film makers about whether they’ve had psychiatric histories or not. I believe if you looked you’d find a few people with the bipolar disorder label, or ‘Britney Spear’s disease’, working in Hollywood. I tend to think of that ‘condition’ as being mostly drug induced.

      That’s an idea though, maybe what we need is a wikileaks type website for psychiatry and psychiatric oppression. All you’d need is somebody in the right position to do a Bradley Manning. Bradley Manning is a hero to some of us.

  7. Of course they are, you are missing the point because you are getting spiky about labels again. We have to call people who are ex-patients something that indicates they are ex-patients so we call them ex-patients, right? It is a term I picked up from you anyway so you can hardly pull me for it.

    I think it is fine to invite people who have experienced problems within the system to apply. Nobody has to interrogate anybody. The goal is to bring together people who have had difficult experiences in order to produce a piece of work that they feel comfortable with and have editorial control over. That way there can be a truth to it that can only be achieved through the people who are controlling the project avoiding exploitation for cinematic glory. I believe that in this way, people will be able to be more open about their experiences.

    Let me break it down for you:

    People being filmed and interviewed by ex-patients: The director of photography is going to have to be someone people are comfortable with pointing a camera at them and a person who truly understands the experience is going to make for a more sympathetic interviewer.

    The presenters being ex-patients: This avoids the “us and them” air of most documentaries.

    The results being edited by ex-patients: I think it is imperative that the people in the documentary have editorial veto otherwise they are just subjects for the camera again. With editorial veto, they can actually say they want a certain part of what they said left out if they wish. This empowers people. They are in control of the project. The editor normally has a lot of control over how the final piece looks so I think it is important to make sure that their sympathies are in the right place.

    The whole thing being directed and produced by ex-patients: The director and the producer are the people who are going to get the project up and running, so the idea is that they be ex-patients who have an interest in making a documentary in this way.

    Not every member of crew needs to be an ex-patient but the ex-patients must have the power.

    I do not think manic depression is necessarily drug induced. It may be in certain circumstances but I think it is more than likely stress induced. Let’s leave our differences of opinion on this one for another day.

    Yes, Bradley Manning. What a brave young man.

    • Spiky? Ha ha. Could be, but I don’t think so. Peers, that’s the word some people use, do plenty. Professional documentary makers, well, agencies with money are more likely to pay/hire them, and then the talking heads talk, usually it’s bought and sold heads, too.

      I’m not against ex-patients making videos. They’re making them now, and, yes, they could use it to interview other ex-patients to good effect. This idea is something like that of launching an oral history project, also a good idea. We need people to tell their stories. The suppression of this history, as in the case of former slaves and other oppressed peoples, is why this is such an important task.

      Usually one or two people will end up doing most of the work, that’s how this kind of thing goes, but that’s not to put it down. Another thing is the little matter of getting the funding, technology, and other resources. It’s easier to talk about doing something, of course, than it is to actually do something.

      Some of this kind of thing is being done now. For example, Aki Imai, has a thrown together website of personal stories, Life After Labels, that also includes videos made by individuals. This seems kind of like a Do-It-Yourself sort of thing, providing you have a whole lot of connections to do it with.

  8. Peers then.

    Funding does not have to be high. The technology required is reasonably inexpensive – there are no special effects or complicated post-production issues. Skills are not an issue; there are plenty of people starting out looking to expand their reels and experience, and there are people, like the ones you mention, already doing it who would be happy to be involved. Yes, one or two people end up doing most of the work.

    Doing creates its own momentum. Let’s talk again about this next year.

    A little light relief, see August 13:

    http://www.davinciinstitute.com/speakers/futurist-speaker-thomas-frey/top-10-photos-of-the-week-by-thomas-frey/

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