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David Oaks: Let’s Stop Saying “Mental Illness”

Let’s Stop Saying “Mental Illness”!

It is helpful to use other phrases for people who have in the past been described as “mentally ill.” This is a living essay, and the author updates it periodically. If you have any feedback or suggestions let the author know c/o the MindFreedom office. [Last modified 12 Decembrer 2010.]

short link to this article: http://3.ly/NotMentallyIll

Let’s find language more inclusive than the phrase “mentally ill”!

by David Oaks, Director, MindFreedom International

David W. Oaks is a human being

David Oaks of Mind Freedom International

I simply ask in this essay:

  • How can we be more inclusive with our language in themental health field?
  • How can we show those who have been marginalized by psychiatric labels that we are listening and welcoming?

This essay is not about being “politically correct.” What is “correct” changes with the winds and tides and individual.

This is a call to stop the use of the term “mentally ill” or “mentalillness” and find replacements!


Here are some suggested alternatives:

  • Mental health consumer
  • Psychiatric survivor
  • User of mental health services
  • Person labeled with a psychiatric disability
  • Person labeled with psychological disability
  • Person diagnosed with a mental disorder
  • Person diagnosed with a psychiatric disorder
  • Person with a mental health history
  • Person with a psychiatric history
  • Psychiatrically-diagnosed
  • Person with mental health issues
  • Consumer/Survivor/eX-inmate (CSX)
  • Mental health client
  • Person who has experienced the mental health system
  • Person with psychosocial disabilities
  • Person who identifies as a survivor of psychiatric atrocities
  • Psychiatrized
  • Neurodiverse
  • Person in mental health care who is on the sharp end of the needle
  • Person experiencing severe and overwhelming mental and emotional problems [describe, such as "despair"]
  • Person our society considers to have very different and unusual behavior [describe, such as "not sleeping"]
  • Your Name Here [e.g. Jane Smith]
  • Person.
  • Citizen.
  • Human being! Period!
  • Etc.? Your creativity is welcome, add to this list!

This essay is not about perfection!

These suggestions about language are not about finger wagging or shaming anyone into “perfection”! Too much of our society is too harsh already!

I love word origins, and the root meaning of the word “perfect” is “finished.” Are we ever really finished with a living language?

In fact, can we ever perfectly describe reality, at all?

No!

The term “mentally ill” is very much a narrow medical model.

If you want to use that term about yourself that is one thing. But when anyone uses the phrase “mentally ill” about others, including me and other psychiatric survivors, the implication is that since an “illness” is the problem then a doctor ought to be part of the solution. “Mental illness” also says since the problem is like a materialistic physical illness, then perhaps the solution ought to be physical too, such as a chemical or drug or electricity.

Please note a subtlety here:

My call is not about opposing the medical model, or any other particular model.

My call is about opposing domination by any model in this complex field. My call is about opposing bullying in mental health care.

So let’s also drop the use of other words that tend to confine us in the dominant model. Let’s stop legitimating the use of words and phrases like “patient” and “chemical imbalance” and “biologically-based” and “symptom” and “brain disease” and “relapse” and all the rest of the medical terminology when we are speaking about those of us who have been labeled with a psychiatric disability.

Yes, this essay has gotten a little long for the Internet, but exploring the complexities of language is far better than just tagging people with a judgmental and harmful label.

Do not brand us.

The emergence of the medical model as psychiatry’s dominant ideology has a fascinating history, such as in the 1800′s in England when “mad doctor” elites jostled with one another to create the early journals, regulations, associations, licensing, government funding and large institutions. The medical model was simply a tool then to consolidate the power of the dominant psychiatrists, and was not about science. After all, the main “medical model” during the rise of that ideology was phrenology, the study of bumps on the head, which even then was beginning to be discredited. (I highly recommend the book Masters of Bedlam to understand how a few hundred elites in England helped construct the medical model domination system we see today.)

Ironically, today, psychiatry’s own official label bible, the Diagnostic and Statistical Manual, does not refer to “mental illnesses,” but tomental disorders. Even inside the DSM, which psychiatry generally believes albeit falsely to be scientific, they do not use the phrase “mentally ill” in diagnosing, so it is actually scientifically impossible, by psychiatry’s own standards, to be officially “diagnosed mentally ill.”

Words matter, especially when they have the force of law. Psychiatric diagnosis has a tremendous amount of undue power.

I was diagnosed schizophrenic and bipolar, and found myself under the catch-all label of psychosis. To admit one has been officially labeled psychotic is perhaps one of the deepest closets to come out of, because the discrimination against those with that “p-word” label is so immense.

I prefer to talk about “discrimination,” rather than “stigma,” because discrimination is something we can actually challenge and change, such as through legislation. The word stigma, of course, comes from “branded,” and implies that my identity as a psychiatrically-labeled person is inherently negative, which is not always the case.

I would rather ask, “Who is doing the branding?”

Who benefits by seeing extreme or even mild mental and emotional problems as primarily a “biologically-based” issue? Those who primarily promote a narrow medical model approach — such as the pharmaceutical companies — benefit by a medical model language.

Certainly, in the long run, taking away the unfair legal power that a few hundred psychiatrists have in literally voting on what courts and legislatures consider “normal” is an important goal. USA psychiatrists are currently working behind closed doors on their fifth revision of the DSM, which has international implications. For years, despite our many requests, the organizers of early meetings on these revisions, such as the influential USA psychiatrist Dr. Darrell Regier, refused to open those doors, or to even respond to civil inquiries.

Illustrating the complexity of language, the APA has found itself terribly divided internally about this next edition, and therefore they’ve delayed publication at least a year, to 2013. The main editor of DSM-IV, Allen Frances, has denounced the APA’s work on DSM V. After public pressure, including by MFI, the APA opened up a bit, and has created a DSM 5 web site to gather public comments about its draft.

We want far more than input on a web site to the few hundred privileged professionals who literally vote on our labels.

In the long run, we must stop all “Psychiatrization Without Representation.” But in the short term, we can at least try to change the language we personally choose to use. I know many of my friends in our mad movement — including psychiatric survivors, dissidentmental health professionals and authors — freely use the term “mentally ill,” because they think it’s more recognizable by the public. However, in the field of Intellectual disabilities, many groups now have campaigns to get rid of the frequently-used “R word.” And of course civil rights activists have largely effectively fought the “N word.” Frequency of word usage does not eliminate the pain that is caused, and does not make change hopeless.

This call is about values of inclusion, diversity, respect and empowerment!

I understand that many people define themselves as “mentally ill,” and accept a medical model. If you do this, that is your choice. However, at this time, the “medical model” is dominant. The medical model has become a a bully in the room. Language that somehow encourages that domination isn’t helpful to the nonviolent revolution in the mental health system we need, a nonviolent revolution of choice, empowerment, self-determination.

What about the many other people who define their problems from a social, psychological, spiritual or other point of view? And what about those who don’t see their differences as problems, just as differences, or even as qualities?

In fact, what about the subject of defamation? According to an attorney we work with, to falsely claim an individual is officially “mentally ill” with intent to harm them has been used in law schools as a classic example of defamation.

We’ve come up with some of the suggested alternatives listed at the start of this essay, using good old-fashioned plain English. Each phrase and word has difficulties of its own. There are many creative ways to address this. Perhaps you have some suggestions yourself, let us know.

I’ve heard that some feel that using alternatives to medical model language somehow diminishes the seriousness of people’s personal pain, that, for example, being diagnosed with “clinical depression” underlines the gravitas of a crisis better than, say, “sad.” But there are words in the English language more fierce than “sad.” How about, for example, “extreme and catastrophic life-threatening anguish”? That phrase has a lot more gravitas than any clinical language I’ve ever heard! (The origin of the word “clinical” by the way, is simply “bed.”)

So speaking of everyday English, what about slang words for us? As with any oppressed minorities, these words can hurt, and sometimes the words are meant to hurt.

Some activists, including me, at certain times have sought to reclaim the words society has thrown our way. I realize others may not choose to ever use words like “mad” or “lunatic” or “crazy” or “bonkers” to describe themselves. We probably ought not use those colloquial terms in certain contexts, like arguing our rights in front of the United Nations or a court hearing. But now and again, some of us like to have some fun and be outrageous, such as at MAD PRIDE events, where it is okay to be creative and reclaim language that has been used against us.

We even have a parade entry with the sign, “Crazy = Normal, Normal = Crazy.”

But this is us laughing with us, and with all of society, to further our goals. That’s different than someone exploiting us for their own private goals.

In the right context, I love to recapture some of the words used about us. We do, after all, get a lot of the fun animals such assquirrelly, crazy like a fox, bats in the belfry and loon.

When we have a mad potluck, I have been known to bring nuts, bananas and crackers in a cracked pot. Here at the MindFreedom office we have two whistles that make the sound of a loon, and a loon stuffed animal! I have hesitated at getting a cuckoo clock, since one never knows who might be on the phone.

I love it that the word origin of “mad” is essentially change, similar to the two letters “mo” in “motion” or “emotion.” You bet some of us want change, and often change is considered “mad.” Perhaps you’ve heard someone whisper about a mutual friend going through emotional turmoil, “She’s… changed….”

Questioning our language can lead to fascinating discussions about words related to madness

For instance, the three words “stark raving mad” create one of the ultimate descriptors of an individual considered psychotic. Word origins could translate that phrase into “staring in hungry movement,” in other words, similar to that focused look a wild animal has in the final second of landing on its lunch. It’s revealing that society has described that particular “extreme assertiveness,” which can be as natural as any scene in a documentary about lions or any scene from the Iliad, as inherently always a sickness.

Moments of extreme assertiveness do not have to be inherently violent and destructive. MindFreedom has a policy of nonviolent action, but nonviolence can certainly include extreme assertiveness. Martin Luther King and Mahatma Gandhi often said that civil disobedience was not a form of passivity, but of soul force or satyagraha.

Any discussion of the language of madness needs to include a mention of how Martin Luther King, Jr., in over ten of his speeches and essays, said he was proud to be psychologically “maladjusted.” It is highly recommended that everyone who cares about change in the mental health system become familiar with Martin Luther King’s use of this term “maladjusted.” For at least a decade, he said in a variety of ways, “Human salvation lies in the hands of the creatively maladjusted.” In fact, he even repeatedly said the world was in dire need of a new organization, the “International Association for the Advancement of Creative Maladjustment” (IAACM).

Take Back Mad Words

I feel words such as “crazy” can actually be positive in certain contexts. Consider, “I’m crazy in love,” or Apple’s early motto for their computers, “Insanely great.” The word origin for crazy is “cracked,” and in Japanese art the pottery with a beautiful imperfection has a special Wabi-Sabi value. On the other hand, a newspaper editorial or journalist disparaging certain citizens as “lunatics” ought to be opposed.

To this day, when I give public speaking engageements, I ask people if they have heard of racism or sexism. Obviously, everyone has. But then I ask if anyone has heard of sanism, and few people have. The phenomenon of “Isms” is often caused by exaggerating real or imagined differences to such an extent that one creates an irrational chasm. To this day I am still exploring the depths of the chasm of “sanism.” and I have still not found its bottom.

And shouldn’t we expect “sanism” to be especially deep? Humans differ by gender, age, racial heritage and religion. These differences, when distorted, have led to discrimination. But how do human beings tend to define themselves? When a typical person is asked to describe the difference between themselves and non-human animals, I can imagine he or she would say, “Humans are the rational animal. The thinking animal. The animal that can do math, fly a plane, engage in commerce.”

Since we humans typically define ourselves by our minds, then those who are considered fundamentally different in their minds can encounter a type of discrimination that is on a profoundly different level than other “isms.”

When major global organizations such as World Bank and World Health Organization have needed to study the impact of mental and emotional problems on society, they often use a measure that is called “days out of role.” This method of measurement may work fairly well for, say, automobile accidents. One can come up with a number of days people harmed by automobile accidents are not fulfilling their chosen role of worker, parent, student, etc., and then give that a monetary value. However, as we now know, mental and emotional differences and difficulties are far more complex than a car accident. It is revealing that the ultimate definition of a mentaland emotional problem by these international bodies is when you are not fulfilling your “role” in the great system of commerce that is a dominant force in the world today.

Once more, we can learn a bit from word origins. The word origin for “role,” it is thought, came from the fact that actors in the 1600′s were handed a “roll” of paper with their script for being a character a play. In other words, one’s “role” is the part played by a person in life, as one dictionary puts it. Again, this may work for something as simple as measuring the impact of car accidents. But when itcomes to measuring mental and emotional well being, shouldn’t we have a measure of the number of days in one’s life that one fulfills the role one has written for one’s self? How many days are we living the life of our dreams?

Sometimes I’m told that things are getting better, because so many people are “labeled.” There are celebrities and co-workers who candidly discuss their diagnosis of depression, anxiety, or attention deficit disorder. However, in some ways things are worse for one of the most serious diagnoses, “psychosis.” As I’ve noted, technically “psychosis” can include many of the people who are labeled schizophrenic and bipolar.

So you know those many young people being diagnosed “bipolar”? Well, they may want to know that many of them are also being diagnosed “psychotic,” a particularly-offensive label that can stick to them for life.

Imagine moving into a new house, and your neighbors discover you have a diagnosis of “psychotic.” You will probably discover that this label still carries a lot of power.

Ironically, though, the word origin of psychotic is simply “soul sickness.” And is there anyone who doubts that our society today has one heck of a lot of soul sickness?

Complicated, isn’t it? You bet.

Care to go deeper?

If I may get a little “big picture” here, in the modern scientific field of “complexity theory” (also known as emergence theory, chaos theory, systems dynamics, etc.) life and the mind appear to be a phenomenon emerging from the edge between chaos and order, far from equilibrium. I highly recommend the little book by Fritjof Capra called Web of Life for an elegant description of this enormous scientific revolution.

For me personally, the environmental movement has helped our “mad movement” a great deal. That is because in recent decades, environmental scientists have produced convincing evidence that what is called “normal” behavior in our society is leading to the destruction of our planetary ecosystem, and an untold number of species. In other words, the similarities between so-called “normal” people and so-called “mad” people may be far greater than the differences.

Of course, a teenager threatening suicide, for example, is in a terrible crisis and we as a society must provide humane, compassionate, and wise assistance on an urgent basis. However, we also need to remember that all of humanity — in its self-destructive adolescence — is far more similar to that suicidal teen than they are different. Sometimes realizing our commonalities can play a big role in providing empathy. In a way, one can see the label as “crazy,” as essentially saying that someone else’s behavior or thoughts are simply so non-understandable, so non-predictable, that they are beyond the realm of your imagining why they might do this.

A classic example is a person running screaming naked down the middle of the street. For many people that’s a very good example of “crazy.” That is, until they listen more closely and discover that this is a mother who is screaming about her burning home, and that her child is trapped inside.

As attorney Susan Stefan put it in a keynote address to the National Association for Rights Protection and Advocacy, perhaps our best response to the over-simplicity of the “chemical imbalance” theory of the mind is to respond, “We are more complex than that!” The psychiatric survivor movement has a special role to play, because there is no evidence of any “chemical imbalance” or physical difference.

But all of these issues also apply even when there are significant and proven physical differences, such as for people who have experienced major brain trauma, such as from strokes or car accidents. Those who have sought recovery point out that over-labeling and over-medicalizing can often hurt their empowerment, which is a key value for true long-term recovery.

Many deep thinkers in the broader cross-disability movement, that includes people diagnosed with visible ‘physical’ disabilities, also wrestle with many of the same language questions raised here. In fact the prefix, “dis,” inherently is itself a negative. Some clever disabled folk are calling themselves “The Dis-Labeled.” Famously, many people with hearing “differences” say they are not disabled, that because of their alternative-language skills they are their own special culture. And what of those missing legs who have newer prostheses that allow them to run faster than any so-called “normal” person? In a flat our race, who is now the “disabled”? There are many books and films on the rich topic of normality and disability in general.

The point is we are not going to find perfect or correct or language.

Our “mad” social change movement has wrestled with language for decades, and there is no consensus. There may never be. This fascinating, frustrating, ongoing discussion is in fact the solution.

Diverse speculation is a wonderful antidote to the falsehood of certainty.

So, we can all show we are trying.

The immensity of psychiatric industry oppression is so great, on so many levels including physical, emotional and even spiritual, that itcan often be overwhelming. That is how even subtle psychiatric oppression tends to mute those who are impacted.

But most of us can still control our tongues, our fingers, our language, our writing. An oppressed group often seeks to redefine themselves as a first step toward liberation. For instance, many leaders of people we have known as Gypsies are asking to be called Romani. Mental health academics, such as Linda Morrison, PhD with her dissertation-based book Talking Back to Psychiatry, have even written treatises on the history of our movement’s ongoing wrestling match with language.

Through our choice of words we can show we are at the very least trying to listen to psychiatric survivors and others who have strong preferences for what we call them.

We can show we are trying to include a wide diversity of perspectives, including those who have often been excluded.

We can show we trying to care, and that we too seek a nonviolent revolution in the mental health system!

So please, let’s drop the use of the phrase “mental illness,” and search for more inclusive and creative phrases. This is a reminder that our words and even our whole social reality of normality aren’t forced on us God-given by the heavens, but are constructs that we mortals all co-create, in our imperfection, together.

Feedback on this essay is welcome: news (at) mindfreedom (dot) org

[12 December 2010]

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5 comments to David Oaks: Let’s Stop Saying “Mental Illness”

  • Tom

    “Chemical brain disorder” is a phrase I saw lately in a NAMI newsletter, used by a consumer to describe himself. I think it has the advantage of putting things on a more physiological basis, which seems to me to be less scary to people. It seems to put in more on par with thinks like a heart disorder, liver disorder, lung disorder, thyroid disorder.

    • Corinna

      Hi Tom! Great to hear from you. I hope you are now working as peer supporter. NAMI has always has an important stake in sharing the biological explanations for emotional suffering, some of which is due to their pharmaceutical funding sources. It’s important to remember that extreme emotional states might come from spiritual emergencies, loss of social role, loss of dreams, trauma, lack of support and connections, or any number of alternative explanations. This research article shows that calling our problems “a disease like any other” has increased the amount of treatment people seek, but actually made people LESS likely to want to interact with us in their communities, families, jobs, or schools.

  • Tom

    Corinna, I see what you mean. I don’t know what the answer is. If a person, whether medicated or not, has a long history of being unable to fully support himself by work, and if professionals make the determination that the reason for this history is a disorder of the brain, what’s that person supposed to do, really? Seeking or declaring his or her independence from medications and psychiatry really doesn’t solve anything, since he or she still finds him- or herself unable to fully support himself by work. People in the mental health system do have limited lives, and are sometimes overmedicated because that serves the interests of pharmaceutical companies, doctors and others, yet, the fundamental problem of the person in the system is that, when not in the system, they were not able to fully support themselves by work. Isn’t that the fundamental problem? It is pretty difficult in today’s America to fully support yourself by work, even for “normal” people, and even more so if you have some sort of chronic “mental” impairment (erratic emotions, paranoia, delusions, or whatever you want to call it). If American had a true social safety net for all, like the Norway, Sweden, Finland, Denmark, etc., then the situation would be different. But in America, we let our fellow citizens fall into homelessness and sleep in parks and so on. See what I mean? Whatever you call it, “mental illness,” “consumer of psychiatric services,” etc., the basic problem seems to be that some of us Americans have a chronic diminished ability to fully support ourselves by work. What are your thoughts about this perspective?

  • [...] it will be a lot easier to make the “Disease Model” of emotional distress go away.  David Oaks wrote an essay called, “Let’s Stop Saying ‘Mental Illness.’&#8221… where he explained why and how it was important to make inaccurate words go away. This essay [...]

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