Mad Pride Movement Meets in TorontoI haven’t written a lot about the “mad pride” movement in the world, because frankly I don’t know what to make of it. I’ve lived my entire life seeing people I love devastated by the effects of mental illness, including a good friend who took his own life because of his deep depression. Contrast that with people who have been forcibly medicated, only to find when they stopped the medication, they could get better on their own, and I’m left scratching my head.

Of course, these are just two anecdotes out of the millions of stories we live and breathe about mental illness. To me, there is no “right answer” about the One True Path to find enlightenment or to relieve one’s suffering from mental illness.

So when I read an article in the National Post that talks about a conference in Toronto about “mad pride,” I’m a little shocked at the tone either the author of the article — or the “mad pride” organizers — are taking…

16 Comments to
Mad Pride Movement Meets in Toronto

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  1. Doc, you take the statements of some of the Mad Pride people too literally. I think they are just reactions to their own real experiences in the “system”. Overreactions, you may say. Just see them that way, not as “invalid” (which you did not say).

  2. John, it is the National Post coverage of the event, after all. There are better write up available for this event. The letters to the editor that have been written (though not necessarily published) about the article tell a different tale.

    The anti-psychiatry contingent defines one end of a spectrum. BigPharma, and organizations like E Fuller Torrey’s Treatment Advocacy Center, the other.At the meeting in Toronto there was representation by people who would place themselves somewhere in the middle.

    They, of course, were not mentioned in the National Post coverage of the event.

  3. Well written blog Dr.Grohol.

  4. Thanks for the thoughtful comments and suggestions — I’ll do some more reading!

  5. One of the issues I have with the “Mad Pride” movement is that like scientologists, they want to deny others the right to choose medications. Here is how two groups are opposing a law in NYS that helps those with mental illness lead better lives.
    http://sites.google.com/site/oppositionanalysis/

  6. To experience a balance to the scales, sometimes it takes hypebole. Words never have the actual result of achieving balance, but they give one the feeling that one is doing something. It is the caged bird singing, loudly.

    Dunbar put it this way:

    We wear the mask that grins and lies,
    It hides our cheeks and shades our eyes,—
    This debt we pay to human guile;
    With torn and bleeding hearts we smile,
    And mouth with myriad subtleties.

    Why should the world be over-wise,
    In counting all our tears and sighs?
    Nay, let them only see us,while
    We wear the mask.

    We smile, but, O great Christ, our cries
    To thee from tortured souls arise.
    We sing, but oh the clay is vile
    Beneath our feet, and long the mile;
    But let the world dream otherwise,
    We wear the mask!

    “Pride in madness,” the hyperbole, the mask, does not, cannot, balance the history of terrible acts of psychiatry, current or past.

    Harold A. Maio

  7. DJ Jaffe, organizations like Mind Freedom which consider themselves to be Mad Pride Activists do not oppose medication if a person freely chooses it. They are against it if it is forced on people.

    And regarding Kendra’s law that you are referring to in the article, it is very questionable whether forced medication improves the lives of people with mental illness.

    By the way, here is how that came about. The person who killed Kendra Webdale, had sought voluntary treatment and was turned away. So instead of instituting laws that would prevent this situation from happening, the legislature enacts laws which take away the civil right of people with mental illness with forced medication. That doesn’t make too much sense to ignore the original problem and then take away the rights of people who didn’t commit any crime.

    Anyway, we need to stay away from what I call smokescreen issues. Maybe if psychiatry was honest about things and stopped claiming falsehoods about chemical imbalances for example, you would stop seeing these movements that people seem to have such a negative reaction to.

  8. Well said AA & Vicky Fox Smith. Before getting one’s exercise at “Jumping to Conclusions”, people need to get the facts straight. The media takes quite a bit of liberty at literary licence. One must research the difference between hype and truth.

    wHEN i WAS A PART OF nami YEARS BACK THEY FOUGHT STAUNCHLY

  9. When psychiatric patients won the legal right not to take their medications we started to see an independence movement of patients who rejected treatment and opted to manage their lives. The quality of life in many cases does not improve. Many become homeless because they can’t manage responsibility like paying their bills. They turn to alcohol and drugs to deal with their chaotic lives. They are unable to control their behaviour and consequently are unemployable. They may become violent if they lapse into psychosis. They may also have other health issues that they neglect and consequently have shorter life expectancy than they should. These are just some of the issues which put patients who need treatment at risk. Helping people make better choices about their lives is more important than allowing individuals to lead destructive lives.

  10. The sensationalistic approach to covering the “Mad Pride” movement seems to be claiming that they are against psychiatric drugs. They are not; they are against forcing drugs on someone who has made the decision to reject them. Apparently, many people who have joined this movement have been badly hurt because they were overmedicated, misdiagnosed, and often outright abused by psychiatric professionals “for their own good”. Many members of this movement are in fact taking psychiatric medication, and feel that it is beneficial for them.

    The way I see it, there’s very little you can do to a person that’s worse than denying them the right to manage their own treatment, to the extent they can understand the choices; or to deny them the ability to understand said choices (for example, deliberately not telling people what medications they are taking, or deliberately not telling them their diagnosis or what it means). This is because, when you disempower someone to that extent, you are taking their life out of their own hands; you are turning them into someone who cannot make their own decisions–forcibly making them dependent. And while this may make them an easier person to handle, it will forever deny them the ability to live a truly independent life–unless they break free and start making their own choices. That is what Mad Pride is trying to tell the professionals: We want to make our own decisions. We want to manage our own treatment. This is my life; I am my own person.

    I am not involved in the Mad Pride movement; but I am rather active in the neurodiversity movement, which is rather similar in that its goals are often totally misstated by people who want to be sensationalistic. Neurodiversity started with autism (and has since been adopted by groups representing all sorts of diverse neurotypes); the basic concept is that “normalization” should never be the goal of treatment. That is: If you have autism, the goal isn’t to turn into a typical person; it’s to learn things and develop your skills and to become a happy, healthy individual.

    But the media have often twisted this goal into the claim that the neurodiversity movement opposes treatment! This is patently ridiculous; the vast majority of us have voluntarily had therapy or assistance of some sort or another, and many of us can’t live without it. But the myth still persists… People seem to think that “treatment”, by definition, is supposed to turn you normal. It isn’t–not if it’s done right, and with respect. Successful autism treatment should result in a capable, happy, functional autistic adult. I’ve seen too many neurotic, constantly-vigilant people straining to maintain a facade of normalcy to think that an autistic person can be happy while pretending to be someone with a completely different brain.

    Back to Mad Pride. Here’s the thing: There wouldn’t be a problem if psychology actually treated mentally ill people like capable adults, rather than proceeding on the assumption that they know nothing and cannot make useful decisions. When doctors act that way, they are self-fulfilling prophecies. When someone is treated that way their whole life, they may not even be cognitively able to make their own decisions at first, having been so conditioned to believe they are incompetent. It’s no wonder that people who’ve been convinced of their own incompetence will have a difficult time making their own decisions. Unfortunately, doctors seem to take this as proof that their decisions should be made for them; and the cycle continues…

  11. Callista, what you’re saying was definitely my experience. The more they reinforced helplessness the more helpless I became. One of the things I found most damaging being inpatient was this infantalising of adults that occurred. We were treated like little children who had misbehaved. If we were “good” (i.e. going to groups, taking meds) then we got privileges if we were “bad” (i.e. not going to group, refusing meds) then we were threatened/punished. The whole thing was just creepy. It’s no surprise that adults rebelled against that. Had I remained compliant I would be sitting in adult day care making potholders today, because that was my doctor’s recommendation. Instead, thanks to my sibling who knows me well and a therapist who focuses on wellness as opposed to illness, I got out of it and obtained a graduate degree and work full time, and have worked full time consistently for years. It chills me to think what would have happened to me if the psychiatrist had been given the power to determine my quality of life.

    When I read abivi’s comments I’m reminded of my relative with paranoid schizophrenia. Her quality of life when on medication was terrible. I don’t know where this idea comes from that if all these people would just stay on their meds they would get a job, they wouldn’t turn to alcohol or drugs, they would be functioning members of society, and life would just be grand. That’s not what I saw. I saw someone who drooled, who has permanent mouth twitches due to the antipsychotics, became morbidly obese, her hands shake so badly she can’t hold a coffee cup, her eyes are glazed over, and she sleeps most of the time. This is the quality of life meds have given her. I guess some would argue that’s an improvement. I don’t agree. It’s very easy to decide what risks someone should take when they’re not the ones taking those risks and ending up with permanent damage. Treatment should remain a choice.

  12. This piece is incredibly unfair of Dr. Grohol. That article in the National Post by Joseph Brean is one of the most egregious examples of media bias on mental health issues I’ve seen in my 34 years as a community organizer in the mental health field. Consider this: Mr. Brean actually referred to a participant in this mental health conference, who self-identifies as a psychiatric survivor, as a “crackpot.” In his own words. As a journalist. Covering a mental health event!

    If you’re curious, just google the words:

    joseph brean mental health bias

    Already, our “gateway” about Brean’s Bizarre Bias is already the top “hit” on Google for that search, and others are catching on.

    Dr. Grohol said he himself had a positive experience with therapy. MindFreedom International also has many members and even board members who have had positive experiences with therapy. The difference is, they are willing to stand up shoulder to shoulder with the many people who have experienced severe and overwhelming human rights violations, and speak out with them.

    I grew up as a Catholic, and know many people who have had very positive experiences as a Catholic. But it would be so horrible to then deny the experiences of those who have been abused by Catholic priests.

    Remember, the problem in Catholic priest abuse isn’t just those abusing priests, it is those WHO ARE PART OF THE ESTABLISHMENT WHO REMAIN SILENT.

    For years in this field, as a direct or an independent nonprofit coalition, I too have had a “live and let live” philosophy about Dr. Grohol’s work on this web site. He has provided many useful pieces of information. We have not denounced his work.

    But from the above, it appears Dr. Grohol has taken a position, and that position is not in solidarity with our members who identify as survivors of abuse in mental health care. I ask Dr. Grohol for an immediate retraction and apology.

    Sincerely,

    David W. Oaks, Director
    MindFreedom International

  13. For the record, I unfortunately note no public reply to my 18 May 2010 post by Dr. Grohol asking him for a retraction and apology for his inaccurate and biased position on the Mad Pride work our social change movement has done. – David W. Oaks, Director, MindFreedom International

  14. And, another week later, still not even the dignity of an acknowledgement o response from Dr. Grohol. Those interested in better coverage of the historic PsychOUT event, can look at the MindFreedom web site.

  15. Nearly a month later… and still no reply by Dr. Grohol. You know, for years I know Dr. Grohol has covered mental health… and hasn’t been particularly interested in the voice of those who have been abused by his profession. Fine But when he directly verbally attacks that movement, and refuses to dialogue about it, then there’s a significant issue. Those who have been harmed by Dr. Grohol’s profession deserve to be heard. That doesn’t mean all mental health professionals are being verbally attacked.

    But silence by those in the industry, and defense of that industry, is a problem.

    Those interested in the other side of the story about mad Pride can just google these two words:

    mindfreedom psychout

    SUPPORT the voices of those who have been harmed by the mental health industry. MindFreedom is careful NOT to throw out the baby with the bathwater. Just google MindFreedom Scientific Committee, or MindFreedom Academic Alliance, to seem some of the caring courageous psychologists who ARE willing to speak out about human rights issues. We work well with these mental health professionals.

    Please ask Dr. Grohol why he refuses basic civil dialogue on this matter?

    David Oaks, Director, MindFreedom International

  16. David, when you demand an “immediate retraction and apology,” that doesn’t particularly appear that you’re seeking a reasonable and thoughtful dialogue on the issue, now does it? Instead, it appears to be a judgmental reaction to a piece that I noted that I had to do some more reading on.

    I agree with the commenters here who noted the bias of the article and that the writer had his own agenda. I now see that, and had I read more/different accounts of the event, I believe I would have written a different entry.

    Contrary to your assertions, David, I have been a huge consumer mental health advocate online since I’ve been on the Internet in 1991. I was providing education about major mental health disorders on newsgroups and commercial Internet services’ bulletin boards at that time, giving ordinary folks access to information that for some reason had been deemed “too much for patients to handle.” I think that kind of paternalistic view in mental health and psychiatry has been extremely detrimental to the field — and most importantly to people receiving decent, respectful treatment.

    We are all entitled to our opinions. Live and let live.

  17. Thank you Dr. Grohol, for responding. I’m glad to hear you would have written a different piece, had you known what you know now (which is a brave thing to say, and similar to a retraction). And I’m sure you have spoken out as a mental health advocate for many years. Yes, my asking for an “immediate” retraction and apology is indeed strong language. On the other hand, the original article that you cited — calling one of our participants a “crackpot” — was also strong language. After 34 years of this work, here is where I think the main disagreement is: We in MindFreedom feel there is widespread, overwhelming abuse in the mental health system. I can’t speak for everyone, and MindFreedom is pro-choice, so we don’t say ALL mental health care is harmful. But we do say there is an extreme, inherent, pervasive amount of abuse. Others, on the hand, endorse reform, saying it’s mainly a few bad apples. Dr. Grohol, you suggest that those experiencing coercion just get a lawyer, or ask us to ‘hook them up’ with a lawyer. Imagine someone addressing racism in the 1950′s telling someone that about the civil rights movement? It’s okay to disagree. We ought to be civil with our opponents. But let’s be clear where the line is apparently drawn: We say the mental health system has astoundingly deep human rights abuse issues; others way it’s mainly okay, and needs some tweaking. By perhaps a coincidence, the latter often are individuals who actually work in the mental health industry itself. Dr. Grohol, you said “providing education about major mental health disorders” was an example of mental health advocacy. That’s a start. But consider the fact that, today, even three year olds are being put on neuroleptics (also known as antipsychotics) because so many now believe a “chemical imbalance” theory has been proven, when it’s actually just a theory. Consider the fact that for years we’ve been told the atypical neuroleptics have far less tardive dyskinesia (twitching caused by neuroleptics that is usually permanent). Now we hear a study that the rate is “more similar” to the TD rate for older neuroleptics. I ask those reading so far to simply go to youtube at http://www.youtube.org, and search for the words TARDIVE DYSKINESIA. Take a look at some of the videos young people are making of themselves with what is probably permanent muscular twitching. Realizing we’re pro-choice, and many of our members take psychiatric drugs, we think there is a tsunami of problems here. We’re not throwing out any baby with the bathwater — we work with plenty of good mental health practitioners. But take a look at those YouTube videos, and decide: “Are problems in the mental health system enormous, or are things mostly okay.” I hope those who decide on the latter join MindFreedom, just google us. Thanks again for the dialogue. I look forward to your next reply.

  18. I think you’re clouding your message a bit.

    I understand the abuse, and indeed, have written on this very blog about the insanity of drugging 3, 4 or 5 year olds.

    But pharmaceutical companies lying or covering up negative data or minimizing the impact of certain symptoms of newer drugs is a very different kind of abuse, one of corporate and ethical malfeasance. These cases are being uncovered and prosecuted to the fullest extent of the law (and again, we’ve also covered these issues on this very blog for years).

    Meanwhile, though, millions are helped everyday by similar medications, and millions more visit outpatient and inpatient psychotherapy clinics to receive voluntary psychotherapy treatment in an ethical and compassionate manner.

    So yes, there are problems with the mental health system. There have always been problems with the mental health system. And I suspect, dare I say, there will always be problems with the mental health system. We can work to reduce the severity and amount of problems, and indeed, by shedding spotlights on abuse and scandal (as we did with the Texas abuse incidents, and organizations like the Carter Center have been doing for years in Georgia), we can perhaps even bring some justice to the system and those who have been harmed by it.

    Who’s to say the scope of the problems, whether they’re “enormous” or not? Without a systematic study done, we just don’t know and can’t say with any empirical certainty (opinion’s fine, but opinion won’t help us better understand).

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