Guest Editorial by Dr. E. Fuller Torrey
In the current issue of Schizophrenia Bulletin, Dr. E. Fuller Torrey, the nation's leading researcher and advocate for people with mental illness wrote on the debate on what to call people with mental illness:
The Substance Abuse and Mental Health Services Administration (SAMHSA) recently invited a dialog about words that are used for individuals with various forms of mental illness and their treatment. For example, what should we call people with schizophrenia?...
...A logical starting point is to ask what schizophrenia is. ...Schizophrenia is a disease of the brain. It exhibits abnormalities of the structure and function of that organ, just as diabetes does in the pancreas, hepatitis does in the liver, and emphysema does in the lungs. Some skeptics have argued that the brain abnormalities observed in schizophrenia are secondary to medications used to treat the disease, but these same abnormalities are found in patients who have never received treatment. ... Given these findings, it seems logical to follow medical tradition and call people with such abnormalities people with schizophrenia. And if they have received treatment, they can be called patients.
Given what is now known, why should we use alternate terms such as ''client,'' ''consumer,'' or ''survivor''?
...
''Client'' is defined by Webster's dictionary as ''a customer,'' especially of legal or accounting services. It thus implies one who voluntarily seeks services. The term is widely used by psychosocial rehabilitation services, such as clubhouses, where individuals do indeed voluntarily seek services. In that voluntary context, it seems appropriate.
''Consumer'' ...conveys the idea that individuals who are receiving psychiatric services should have choices and should participate in the decision making, an important and useful concept insofar as those with schizophrenia are aware of their illness and thus able to make choices. Unfortunately, ...approximately half of all individuals with schizophrenia, ... are largely unaware of their own illness, deny that anything is wrong, and refuse all treatment. ...'Consumer'' is thus not a useful term for people with schizophrenia because it refers to only the half of individuals with this disease who are aware of their illness and it excludes the others.
''Survivor'' is... a term is used by psychiatric patients, not like ''cancer survivor'' but in a more menacing sense like ''rape survivor'' or ''Holocaust survivor.'' It implies survival of a traumatic event, specifically in this case involuntary treatment for a psychiatric illness. A major goal of (people who use this term), is to abolish all involuntary treatment. Such a goal ignores the needs of those individuals with schizophrenia who are unaware of their illness and who, because they are not being treated, are regularly victimized and end up homeless and/or incarcerated. Thus, ''survivor,'' like ''consumer,'' applies to only some individuals and is not all-inclusive. To use such terms ignores the needs of those to whom it does not apply and is thus a form of discrimination.
...
The latest term being used for people with schizophrenia and other severe psychiatric disorders is ''people with lived experience,''...being increasingly used by groups funded by SAMHSA. ...In reading the literature... it is apparent that most of the time the term is meant to imply that the delusions, hallucinations, and other symptoms experienced by individuals with schizophrenia are merely part of a spectrum of human experience. It is thus an implicit refutation of the medical model of disease. ...
Most individuals with schizophrenia, including those promoting terms such as ''people with lived experience,'' are receiving medical disability benefits such as Supplemental Security Income, Social Security Disability Insurance, and veterans disability pensions. ...Logically, if they do not believe that they really have a disease, they should not apply for, or accept, such benefits....
What about the term ''schizophrenic''? ...It has been prohibited by the SAMHSA word police and by some state departments of mental health that have decreed only ''people first'' terminology to be politically correct. Like ''diabetics,'' ''alcoholics,'' and epileptics,'' ''schizophrenics'' can usefully indicate a group of people with a common condition, and some individuals with schizophrenia refer to themselves this way. Thus, for some, it may be a perfectly acceptable term.
..It seems bizarre for one federal agency -- the National Institute of Mental Health (NIMH) -- to be supporting research projects to understand the causes of a brain disease that another federal agency -- SAMHSA -- is describing in discriminatory and misleading terms, especially because both SAMHSA and NIMH are part of the Department of Health and Human Services. Let us then propose that ''client'' be used only in the context of psychosocial rehabilitation services and that ''consumer,'' ''survivor,'' and ''people with lived experience'' be abolished from all federal publications when they are used to refer to people with schizophrenia. They can be consigned to the junk heap of lexicographic history.
Follow DJ Jaffe on Twitter: www.twitter.com/TheRealMrMe
Again, the groups who have undergon psychiatric "treatment" by force ought to be able to choose their own names, without regard to the opinion of "advocates"....
This link puts the reasoning in context -
http://www.madinamerica.com/madinamerica.com/Timeline.html
Duane
Out of concern for anyone who might open the link above, and consider getting off psychiatric drugs... This can be very dangerous, and should be done with clinical supervision. Psychiatrist, Peter Breggin has information on his site at www.breggin.com...
Also, the Icarus Project and Freedom Center have some information at www.theicarusproject.net... The Road Back at www.theroadback.org.
Duane Sherry, M.S.
discoverandrecover.wordpress.com
http://www.treatmentadvocacycenter.org/index.php?option=com_content&task=view&id=621
http://www.ahrp.org/cms/content/view/62/81/
Duane Sherry, M.S.
Discover and Recover: Resources for Mental and Overall Wellness
discoverandrecover.wordpress.com
Many have undergone this "treatment" by force - incarceration, drugging, ECT... and were deeply injured by doctors and a medical community that has yet to recognize that it often causes more harm than good... in fact, much more harm than good.
In my opinion, those who have survived these autrocities are best served by peers, equals, people who understand, first-hand what it means to have been abused by the very people who claimed they were there to help... to heal.
Attorney, Jim Gottstein is a psychiatric survivor, and a true "advocate" -
http://www.law.duke.edu/shell/cite.pl?25+Alaska+L.+Rev.+51
Duane Sherry, M.S.
discoverandrecover.wordpress.com
1 Are you suggesting the only people who should be allowed to serve those who have been treated over objection are "people who understand, first-hand what it means to have been abused by the very people who claimed they were there to help... to heal." IOTW, can other 'consumers' be good peer counselors for them.
2. Would that logic also say that the only "peers" who can help those who have been helped by medicines are those who have also been helped? IOTW, can an anti-psychiatry peer 'serve' one who believes in and is helped by meds? tx
1) I believe that people who have undergone abuse by psychiatry are best able to understand others who have undergone similar abuse, and are not well-served by "advocates" who have their heads in the sand with this issue.... and it is a huge issue! There has been enormous recovery with peer-run programs, unseen by conventional hospitalizations, "treatment."
2) I don't claim to be a spoksperson for anti-psychiatry... I can say that people I've met who are adamantly opposed to drugs personally, and/or have been deeply injured by psych drugs seem to have an open-mind when it comes to the choices made by others... In fact, some of the strongest anti-psychiatrists I've met leave a window open for the benefits of drugs - limited use, short duration, not as a sole source of treatment, to help overcome an emergency situation... the common denominator as I've come to understand it is quite simple - informed consent, and not by force.... If a person believes that "treatment" ought to be allowed by force, I cannot see how they could be of benefit to anyone... In fact, I see such a person as quite a threat to the dignity and liberty of the human soul.
Duane
It began when a teacher told me he thought it was alright for teachers to have sex with high school students. He even told me that the principal of his school had been having sex with a student 12 years earlier when I was a student. When I got accused of punching the creep her told people that I was delusional and denied saying anything. That was good enough for the psychiatrists to say I had schizophenia. One psychiatrist admitted to me that she really had to drug me because she was afraid of getting sued if I got released and commited another assault. She didn't care one bit about my welfare. She was wanted to cover herself. It's disgusting. Involuntary treatment should be banned.
""The very term ['mental disease'] is nonsensical, a semantic mistake. The two words cannot go together except metaphorically; you can no more have a mental 'disease' than you can have a purple idea or a wise space". Similarly, there can no more be a "mental illness" than there can be a "moral illness." The words "mental" and "illness" do not go together logically. Mental "illness" does not exist, and neither does mental "health." These terms indicate only approval or disapproval of some aspect of a person's mentality (thinking, emotions, or behavior).
Psychiatrist E. Fuller Torrey, in "The Death of Psychiatry", 1974"
Just as if it were cancer, heart disease or diabetes being discussed, it should be no different: i.e., "People with ...".
As far as the other, separate questions raised and also somewhat confused within the article by its author, the other terms mentioned (e.g., ''Client'', "Consumer" or "Survivor") would appear to speak more to one's perspective as well as experiences within treatment settings or systems of care than to whether people should be referred to as being people or labeled as either things or what disease or illness they are either diagnosed as having or perceived to have.
The fact is the author attempts to compare apples to oranges.
The difference is found within the context as well as the application.
By the way, I am known to independently employ the term 'people with lived experience,'' and, speaking for myself, prefer to use this concerning those profound, "serious and persistent" life experiences others term as "mental illness" *(1), homelessness and the severe abuse received at the hands of others that had preceded these experiences of mine and the resulting trauma, not too mention abuse and additional trauma experienced afterwards, including what was called treatment.
*(1: as if these were something merely either wrong with or broken within me)
Lastly, no matter what is being debated, we all our more than the sum of our parts, including our brains.
One does not have to be directly paid by a pharmaceutical company to be supported by them.
2. You accuse me of bias against the medical model because of financial incentives. Have you ever considered that it is the medical community which has so much more financial incentive to suppress any challenges to the validity of the medical model of mental illness and the use of prescriptions medications?
3. The "science" reaches conclusions which are not borne out by the data. I have written on serious flaws in the trials for Prozac. The FDA cited these flaws and still approved Prozac. I again invite you to visit my blog KICKING THE HABIT: HELPING PSYCHIATRY END ITS ADDICTION TO PRESCRIPTION MEDICATIONS at fullspectrumcenter.org/blog and/or contact me for more examples.
There is also science on my side...a wealth of research on the serious effects of long and short-term use of these toxic medications. There is also much written on the lack of real scientific evidence that psychological problems are actually a medical issue at all.
You are blinded by your need to believe in the competence of the medical community to address psychological issues. You do not have to be scared of change or the evolution of the field of psychological health. Bloodletting and tobacco-smoke enema machines used to be prescribed by medical doctors for almost any physical or mental problem.
Sincerely
Dr. Alexander Bingham
Alexander@fullspectrumcenter.org
fullspectrumcenter.orgblog
My entire family has been devastated by mental illness, and lack of treatment was the issue. My mom has bipolar disorder, as do I. Myself and my siblings were put in foster care when my parents could not function. My brother committed suicide.
I find Mr. Jaffe advocates wholesale whatever NAMI has to say, and past interactions with him have shown me that he has little concern for people who don't have access to services. He prefers to focus on forcing meds on "violent" mentally ill people through policies such as Kendra's Law (he bragged that he helped get it adopted). When you ask him to address the hundreds of thousands of nonviolent people who need services but can't get them, or about the need for psychosocial services, you get crickets. Zero response.
My training is in psychosocial treatment, so I know the merits, but I don't understand why you would reject the entire medical model. For example, doesn't syphilis cause psychosis?
Dr. Deborah Megivern (Foster)
But there are many many advocating for that, including NAMI, MHA, etc. My impact would not be great. Instead, I choose to focus my efforts helping those shunned by other advocates: those with a past history of violence due to going untreated. Those most likely to end up incarcerated with all their rights taken away. Those who you won't find featured in 'anti-stigma' commercials and PSAs. Thanks.
Thank you for your heartfelt reply. I am very sorry that you and your family have suffered so much from the effects of psychological distress. However, this does not mean that you all have suffered from an incurable, genetic, and biological illness requiring dangerous medications which only the medical profession can prescribe...This is the assumption which DSM diagnoses such as schizophrenia perpetuate...You ask"What is schizophrenia then if not a medical illness?"Schizophrenia is simply a label used by psychiatry to corner the market on treatment...it has not been proven to be a medical illness by any valid scientific research. Research which supposedly proves the medical model of mental illness, including autopsy analyses...does not hold up to critical analysis. It is all speculation hiding behind statistical manipulation and biased funding. Of course, psychosis is a real experience, but it can be induced by so many different causes, like syphilis, as you point out..including the very medications prescribed to reduce psychosis.
Finally, you say"I don't understand why you would reject the entire medical model."I do not reject it...I simply find it dangerously ineffective and unnecessary to use it and its products because there are safe and effective alternatives. I do reject those who,like DJ, refuse to even consider that they might have been misinformed...
Dr.Alexander Bingham
e-mail:Alexander@fullspecrumcenter.org
website/blog: Kicking the Habit:Helping Psychiatry End Its Addiction to Prescription Medications at fullspectrumcenter.org/blog
You continue to expose your dogmatic adherence to your blind belief in the competence of people such as Fuller Torrey who illustrate the influence of the kickback money, flawed research and manipulated marketing information paid for by pharmaceutcal companies, you would realize that the medical model of mental illness is simply not defensible anymore. I am both a psychological researcher and clinician and I can tell you from my professional experience that the use of psychiatric products such as prescription medications, the medical model of mental illness, and pathological diagnoses such as schizophrenia is dangerous and uneccessary. Psychological health can be restored and maintained even the severest cases without medication and eventually without professional help.
I challenge you to two actions:
1. Find and send me one valid, unbiased, scientific study proving the existence of schizophrenia as a medical disorder. As a critical evaluator of psychological research, I have yet to find one after years of searching through medical journals and textbooks. If you do find one, I commit to a public apology.
2. Stop embarrassing yourself by ignoring the wealth of literature challenging the medical model...find out how rotten the foundation of theory and practice has been in the field of psychiatry since its inception. If you are interested, i can give you a list of pertinent authors.
I am interested in dialogue, not diatribe...hopefully, you are,too.
Dr. Alexander D. Bingham
Fullspectrumcenter.org/blog
Alexander@fullspectrumcenter.org
As for your second point. You are a psychologist, not an M.D. and have financial incentives to not believe it is a medical illness. To do so could require you to send some patients to an MD for treatment. Apparently you believe every organ of the body (heart, liver, lung, etc. and every part of the body, hands, arms, etc) can have a medical illness except for the brain. Science disagrees with you. Scientology agrees with you.
As for Dr. Torrey, he accepts no pharmaceutical money for his research or for speeches, and the fact that you suggests otherwise, makes me have difficulty thinking a dialogue is in order.
Thank you for your comment.
Thank you for replying. My reply is too long to fit in one comment. I hope you will take the time to respond to both segments.
1. It would be good if you could write without such a condescending tone. Just because you have been given an unchallenged pulpit here to preach your biases and assumptions, this does not give you, the medical model or your rhetoric automatic validity.
2.It is you who have chosen to ignore my invitation to dialogue and explore the literature challenging your position. By suggesting articles supporting your position taken from the very person whom I have already described as an invalid source, you are simply avoiding addressing my point. However, I address yours briefly here.
If you were an expert in critical analysis of bias in psychological research, as I am, you would know that anything published in a "Schizophrenia" bulletin is guaranteed to be biased towards believing in the existence of the disorder. I am familiar with Torrey and his need to convince people of the medical nature of schizophrenia. among other things, it allows him to feel righteous in supporting the forced drugging, hospitalization, and warehousing of thousands of people instead of giving them the care they need so badly. I have read more than enough of biased, shoddy scientific research sponsored by the NIMH, which only sponsors pro-medical model research and fans the fires of fear set by organizations such as NAMI, CHADD, and others promoted by Torrey.
less serious problems. What's in a name is important when the Dollar pie is divided. Our agencies
do not even like to treat those who are in denial and therefore non-compliant. They are the people who end up in jail, committ high rates of suicide, and are shunnd by family and friends. The labels are sad. However, what is even sadder is that the person who suffers from schizoprenia is the biggest victum in the mental illness business. And, it is a business. I am not embarassed to say that I have a ffew friends who suffer from schizoprenia. Their lives (the ones who are still alive) are a
series of tragedies and sadness. Thus, I agree that the label is important. Thanks to Dr. Torrey and
DJ for the work they do on their behalf.
Also, while "friend" may be useful as a salutation, when I go to a doctor for the specialized knowledge she hopefully has, I want to be sure they know I am a person with leukemia, depression, heart disease, or whatever I am being treated for. I would hate for that information to remain hidden from my clinician due to political correctness. Ditto when I try to raise awareness of mental illness, schizophrenia, etc. I would hate to have to do it with the PC handcuffs of refusing to identify the group.
Pehaps most importantly (to me) is that the use of PC non-medical language diverts resources from helping those who have zero problem saying they have schizophrenia, bipolar, etc. Thanks for your comments and thoughtful expression of them.
I call them friend because I have made it a point to be friendly and find that in return I get the same--respect and friendship. Did you really believe I meant it as a salutation, with no basis other than a friendly greeting? And as to What do we call people, I believe that what we call people should be out of respect, what they ask us to call them, whether it be a nickname, a given name or how they personally through Self-Determination define themselves. I think this because I really was taught what respect really is: it is not just being civil and polite. Ref Alternatives: you do not stand by your own statements when thoughtfully challenged.
Psychosis Due to a Medical Condition also includes a large number of different medical conditions. Neurological conditions that may cause psychosis include brain tumors, cerebrovascular disease, Huntington's disease, multiple sclerosis, epilepsy, auditory or visual nerve injury or impairment, deafness, migraine, and infections of the central nervous system. Endocrine disturbances include thryroid conditions, parathyroid, or adrenocortical system. A decrease in blood gases such as oxygen or carbon dioxide or imbalances in blood sugar or electrolytes are causes of psychosis. Autoimmune disorders have also been known to cause psychosis.
A substance-induced psychotic disorder, by definition, is directly caused by the effects of drugs including alcohol, medications, and toxins. Psychotic symptoms can result from intoxication on alcohol, amphetamines, cannabis, cocaine, hallucinogens, inhalants, etc. and other or unknown substances. Psychotic symptoms can also result from withdrawal from alcohol, sedatives, hypnotics, anxiolytics, and other or unknown substances.
Some medications that may induce psychotic symptoms include anesthetics and analgesics, anticholinergic agents, anticonvulsants, antihistamines, antihypertensive and cardiovascular medications, antimicrobial medications, antiparkinsonian medications, chemotherapeutic agents, corticosteroids, gastrointestinal medications, muscle relaxants, nonsteroidal anti-inflammatory medications, other over-the-counter medications, antidepressant medications, and disulfiram . Toxins that may induce psychotic symptoms include anticholinesterase, organophosphate insecticides, nerve gases, carbon monoxide, carbon dioxide, and volatile substances.
The media has made such horrific jokes about it that the person who suffers from schizophrenia and
the stigma that goes with it would probably rather be called anything. These other names are just a smokescreen by groups waving their own flags or causes. The terms consumers and survivors do make sense to people who have been mis-diagnoised or abused by an insensitive system. As someone who was mis-labelled as a "young schizophrenic " many years ago, I prefer to be called by my name. I do not think this is the biggest problem in the mental illness world.
I've noticed that it's usually the people who are in denial about their condition who generally protest certain labels the most. With serious mental illnesses like schizophrenia and bipolar disorder (my husband's diagnosis), then, I can see how---unfortunately---the terminology would become a focal point.
I completely agree that the time spent debating this issue would be better used finding new ways to treat/manage these diseases.
If you're interested, I blog about the impact of mental illness on marriage: http://heatherwhistler.wordpress.com/
by doing a lousy and sometimes "political payback" job.