(Note: This is an update and adoption of a piece that first appeared in October 2009)
This first full week in October is being celebrated as Mental Illness Awareness Week (MIAW). In celebration, well meaning mental health advocacy organizations are busy hosting events to reduce the “stigma” of mental illness.
But I don't believe there is ‘stigma’ to having a mental illness.
I believe serious mental illnesses, like schizophrenia, are real biologically based disorders that are no ones fault. Serious mental illness or ('consuming mental health services') is not, “a mark of shame or discredit”, or “a mark or token of infamy or disgrace”. There’s no stigma to being mentally ill the same way there is no stigma to being “black”, “gay”, “short”, ”tall”, “lefty”, “righty”, inny, or outy.
There is discrimination. But that’s another story. And ending it takes other strategies. As J. Rock Johnson, a former head of the National Alliance on Mental Illness (NAMI) consumer council once said, “the most stigmatizing thing we do is talk about stigma.&rdquo
I think the efforts to reduce stigma are actually harmful because they are accomplished by diverting attention away from those who need our help the most: the most seriously mentally ill.
The anti-stigma campaigns are premised on the belief that the key to reducing ‘stigma’ is to convince the public that “the mentally ill are just like you and me” and “with proper supports can recover and become productive members of society”. Those two facts are true, if you’re talking about the higher functioning 25 percent of Americans who have a “diagnosable mental disorder”. Or the 50 percent who believe they have a mental health issue. Hey, who doesn’t?
But what about the others? The three percent to five percent of Americans who are the most seriously mentally ill -- like those suffering from untreated schizophrenia or treatment-resistant bipolar disorder, the very people who often need our help the most? And what about the homeless psychotic, eating out of garbage cans, sleeping in cardboard homes, and living with festering wounds under layer after layer of filthy clothes because they have a mental illness than makes them unable to help themselves?
Trying to gain sympathy and resources for mental illness, by only displaying the highest functioning individuals, is like trying to end hunger by showing the well-fed. And new research shows it doesn't work. There is no less 'stigma' today than when these efforts started.
Not everyone agrees with me. Some people believe mental illness is a myth. And there are those who believe strongly there is stigma to being mentally ill. The Alternatives 2010 Conference-a meeting of people with experience in the mental health system-who I would think would be the first to believe there is no stigma to being a person with mental illness, had at least eight workshops on stigma.
The Surgeon General also believes there is stigma to having a mental illness. "The Surgeon General's Report on Mental Health" cited stigma as
the most formidable obstacle to future progress in the arena of mental illness and health.
But in later sections, the Surgeon General discusses why stigma exists:
The answer appears to be fear of violence: people with mental illness, especially those with psychoses, are perceived to be more violent than in the past.
It is well documented that only a tiny percentage of mentally ill people engage in violence. But they tend to be the most seriously mentally ill.
The report notes that in the 1950s, when most seriously mentally ill individuals were hospitalized, only 13 percent of the public associated mental illness with violence, while in the 1990s, 31 percent of the public made this association. It seems clear from the Surgeon General's report, as well as from research studies, that little progress will be made in decreasing stigma until we address the issue of violence. To do so is currently considered politically incorrect by some people, who claim that addressing this issue will cause additional stigma. Yet, if violence is the main cause of the stigma, our failure to address it simply ensures that stigma will continue indefinitely.So whether one believes that there is stigma to being mentally ill; or discrimination against the mentally ill, the answer remains the same: let's help the most seriously ill.
Follow DJ Jaffe on Twitter: www.twitter.com/TheRealMrMe
I appreciate that you spark people to enter conversations that keep us all thinking regardless of our position.
But over the decades the people AA encompassed widened to those who hadn't fallen to the streets, those who still had their jobs and marriages. I've known old timers and read of those gone who say what a difference the program is from its previous years in the type of people now attending.
But its Traditions also recommend that AA groups try to steer clear of dogma, hierarchies and involvement in public issues.
But with mental health advocacy expanding into just these things it begins to take on the characteristics of the very organizations who they decry, medicine, pharmaceutical companies, government. It's the nature of this kind of growth but now you have the form of trough dipping, careerists and marginalization of a sub-group forming all over again. And the professional consumers take over in a very self-serving, self appointed and self centered way. The ones who were the original concern and who truly needed help and advocacy are rarely even mentioned.
As to your comment on 'stigma' versus 'discrimination', you might want to read what Otto Wahl, often considered one of the many father's (and mothers) of the Anti-Stigma movement wrote. While he doesn't go all the way into buying my argument, he clearly understands it and perhaps can explain it better than others. Go to http://uhaweb.hartford.edu/owahl/InMyOpinion.html
As for Huffington Post, they have many people who write on mental illness. Go to the "Living" section at the top of page. There are more writing in "Impact" section.
http://uhaweb.hartford.edu/owahl/InMyOpinion.html
I find your articles a welcome relief from the "professional consumers" and their diatribes that contribute nothing, and so called advocacy that is completely self-serving and ignores the most vulnerable and those truly suffering. It's time to focus on the few percent that truly need our compassion and help and leave the other 15% to their egotistic ramblings.
There are millions of people out there whose lives are disrupted by these extreme crisis states. There are families who are desperate for help that does not pose substantial risk to their children or themselves. There is a grave need for affordable alternatives to hospitalization and pharmaceutical treatments. There is a need for substance abuse programs, drug withdrawal programs, peer support programs. I don't consider these to be "egotistic ramblings". They are very real needs that need to be addressed.
Thank you for your comment. You misstate what I believe. Please read the Treatment Advocacy Center Policy on Assisted Outpatient Treatment to see what I do and don't believe. I believe you will find that many of the thoughts you attribute to me are not in keeping with facts. Thank you for your comment.
I am going to assume that every schizophrenic is someone's child; someone's parent; someone's spouse; someone's sibling; someone's aunt, uncle, grandparent, friend. When we are seeking compassionate and respectful care for ourselves or the people we love, we want them to be helped by that, not harmed. We don't want them to die. This is why I actively promote treatment programs that use minimal or no medication. The surprising thing is, they also produced astonishing rates of recovery -- right in the ballpark of 85%.
This is what we want for those we love. We want them to be healthy, happy, loving, engaged with life. If we can help them do that with no medication or with only minimal medication, we are helping them return to life. Thank you (and the Huffington Post) for the opportunity to speak to the issue.
Enjoy your evening Mr. Jaffe.
~ Namaste
I wonder how many of these "seriously mentally ill" you have taken into your home, befriended or come to know well enough to actually be in a position to advocate for them? To advocate for what is another's interest, requires the advocate to actually know what the individual desires, needs, and requires leaving one's own preconceived notions and biases out of the effort entirely.
You and your type of advocacy scare me, it is not representative of my values and does not leave room for me to determine for myself what is in my own best interest. I have experienced psychosis, I have a diagnosis of bipolar disorder that with professional help and support, I quit treating with medication more than 5 years ago. Even more than my fear for myself, you and your brand of advocacy scare this mother, for my son who has experienced the most horrifying of of human rights violations in his 22 years because of the efforts of you, the TAC, and NAMI who have pushed your advocacy agenda down my my son's throat, pushing for legislation to make sure the right to choose whether or not to take harmful treatments, and his human rights are denied; his Constitutional Rights to Due Process are not even part of your agenda for him; so are not protected by the laws passed by your advocacy agenda. For shame, Mr Jaffe!
Thank you for your comment. Your comment, " his Constitutional Rights to Due Process are not even part of your agenda for him" is incorrect. Please read The Treatment Advocacy Center Model Law on Assisted Treatment at http://www.treatmentadvocacycenter.org/index.php?option=com_content&task=view&id=49&Itemid=78 . Specifically I point you to Article 8. Appeals;
Article 9. Safeguards; and Article 16. Patient Bill of Rights.
The law includes extensive due process protections. Many of the people involved in writing the law are consumers and would never support what you say the law does. Neither would I.
Thank you for your comments.
I have read your Treatment Advocacy Center Model Law on Assisted Treatment. I have read the entire chapter of the applicable law in my state, they are in fact similar and horrifying to me. I have read the policies and procedures effected to implement the law, that mental health professionals are to adhere to. I am horrified, to be honest with you. I think that in practice, the law is seldom adhered to.
The fact that you believe that the Model Law is complete does not mean that in practice an individual's Constitutional Rights are not violated. I find your attitude strange to say the least. Having written also a Tip Sheet that advocates lying to police, and turning over furniture to facilitate commitment of a person, it should not be surprising that other dishonest tactics are then utilized.
URLs to my reports: if you are interested:
http://involuntarytransformation.blogspot.com/2010/09/in-re.html
http://involuntarytransformation.blogspot.com/2010/09/it-took-one-minute.html
I realize that my responses to your writing seem personal, it is not my intention to offend you; but for me it could not be more personal. It is my intention to speak to what I have experienced and witnessed; as it is far removed from what you seem to think the effect of these laws are. In practice, this process often causes harm and breeds mistrust of professionals both in those treated and family and friends who bear witness.
1.
a mark of disgrace or infamy; a stain or reproach, as on one's reputation.
2.
Medicine/Medical .
a.
a mental or physical mark that is characteristic of a defect or disease: the stigmata of leprosy.
Well I guess you must have a different definition for stigma. With that definition I would have to say that having a sever and persistent mental illness would be stigmatizing. I think any time something leads to discrimination the persons reputation is compromised in some way.
It really sounds like you have an axe to grind with the Alternatives conference. I was able to attend the conference the past week. I received an opportunity to go to the conference from my employer. I do not have a mental illness but thought it would be a good way to see what the consumer movement is about. In no way did I get a feeling that people there did not feel that mental illness is not a real thing. Yes, there was a wide array of philosophy as to what is mental illness, and how is recovery best facilitated. Sessions were aimed at how to provide peer support to other consumers who may not be as far along in recovery. I think if you are going to make so many comments on the state of alternatives and the consumer movement, you should do good journalism and go check it out first hand.
I have avoided flagging your posts as abusive as I am required to do when they attack an individual. Could I ask that you limit your posts to the issues addressed in my posts, rather than your opinion of me? Thank you for your consideration. (I would also ask anyone else tempted to flag King Brown posts as abusive, to hold off for now. Thank you)
My level of 'functioning' is not a medical fact Mr Jaffe, nor is anything you say a medical fact. It is down to hard work fighting psychiatry's lies about me, and not taking toxic psychiatric drugs that I owe my 'level of functioning'. I have the 'schizophrenia' label, and I don't take tranquilizer drugs, I don't want or need the violence and violation you label 'help'. You don't speak for us.
"And what about the homeless psychotic, eating out of garbage cans, sleeping in cardboard homes, and living with festering wounds under layer after layer of filthy clothes because they have a mental illness than makes them unable to help themselves? "
Not demonstrating to you the act of helping themselves does not constitute hard evidence of inability to do so. I would move onto the street and into a garbage can tomorrow if it meant I could stop living in terror of coercive psychiatry. Maybe these people have brain damage from the toxic drugs the state placed in their never proven diseased brains. I've experienced states and distress you would label, without a single biological as 'psychotic'. You haven't. Just because you find someone's lifestyle offensive, you have ZERO right to institute horrendous forced drugging laws that will terrorize many other people. I'd rather be homeless than have my brain raped by the state.
That's why you lobby for state force and violence to push your beliefs on those who don't hold your beliefs is it?
Nodoby I've ever met in my life believes extreme states of distress are a myth. They are just a little concerned by the glaring fact psychiatrists do not even examine their patients' biology in deciding who 'is' you say, 'neurobiologically diseased'. You clearly require a much lower threshold of evidence, and you're even willing to forcibly hand of over your neighbor's body to the state against their will on the basis of your nonexistent patient specific evidence of 'neurobiological disease'.
"And there are those who believe strongly there is stigma to being mentally ill."
I absolutely despise the way you cast aspersions on some of the most brave survivors of state sanctioned violence alive in the world today, courage you'd no nothing about since you hide behind lies and disease mongering, violence highlighting, government force and false advocacy.
The Alternatives 2010 Conference-a meeting of people with experience in the mental health system-who I would think would be the first to believe there is no stigma to being a person with mental illness, had at least eight workshops on stigma."
You admit it right there at the top of your piece when say 'I believe'....
Your beliefs, should be backed by the force of law, we will fight not to have your beliefs imposed on us.
Capital letters indicate missing word from typo...
"I'll believe I have a brain disease when you can send me the number of a single psychiatrist in the world THAT examines their patient's brains and proves them to be diseased."
"should be NOT backed by the force of law, we will"
The people who pay Master Jaffe to write about how upset he is believe in slavery, too, but only under certain circumstances; only for certain people.
Mr. Jaffe employs the metaphor "the" mentally ill. He errs to do so, think "the" Jews, World War II, or here, "the" Blacks.
Our attitudes are reflected in our grammars, though we may well not want them to be. Our language is often reflex not will.
I recall very vividly our responses to "the" Blacks, Rosa, because of our insistence her skin was a "stigma," was relegated to the back of the bus, concretely and metaphorically. On that day the US Supreme Court ordered it, our prejudice against her, we insisted it was a her "stigma," ended, and she, like the rest of us sat where she chose.
The "stigma" of Jews disappeared long with millions of lives, those fighting to end World War II and those who went up the chimneys. The "stigma" of Blacks disappeared, along with untold lives, once a US Supreme Court commanded us to end it. Other US Supreme Courts had promoted it.
Our prejudices in the area of mental health will end when we are commanded to do so, we have not the will ourselves, nor presently does the US Supreme Court, which itself practices it. For example of that practice, see "Heller," 2008, and "McDonald," 2010.
Harold A. Maio, retired mental health editor.
khmaio@earthlink.net
This biologically based stuff is nonsense. DJ Jaffe continues his ____
Oh, forget it. For those interested, read the comments section of Jaffe's last entry. It was extremely enlightening.