Disliking the Mental Illness Label: A Psychiatric Survivor’s Perspective

Welcome to From Insults to Respect. 

In a recent post, I shared some of my views about the pros and cons of the mental illness concept. I’m retired now, but derived my way of looking at these issues when I was employed in various settings as a PhD level psychologist.

During my career, I often interacted with people who, upon accessing mental health services, came away believing they were diagnosed as having a mental illness. I found that some of these people were just fine with this, while others felt the label, which went into their personal health record, was disrespectful and misleading. Although I believe my experiences provide a useful perspective, I also believe it’s important to hear directly from people who have been labelled in this way. Today’s post gives voice to one such person.

David. W. Oaks

David William Oaks is a co-founder and former executive director of MindFreedom International which rejects the domination of the biomedical model of most current psychiatrists. He became interested in this issue because of being, himself, institutionalized and forcibly medicated in the 1970s while studying at Harvard University for what was “diagnosed” as schizophrenia. In his view, he recovered by rejecting the label, along with the psychiatric drugs, and by getting support from family and friends. To see what his take is on this labelling issue, below I provide with his permission an abbreviated version of his “Let’s Stop Saying ‘Mental Illness’” article which you can read in its entirety HERE.

An Abbreviated Version Of “Let’s Stop Saying ‘Mental Illness’”

David W. Oaks at a a Psychiatric Survivors Rally

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.

By the way, have you been noticing a few “quotation marks”? Since 1969 when the movement began, mad activists have questioned language. What some activists do to provide just a little bit of breathing room between us and mental health industry language, is the generous use of quotation marks. For example, for decades some in our movement have changed, People with schizophrenia, to People with “schizophrenia.”

Quotation marks like this help the activist writer a bit, to show that it’s not the writer’s word, that he or she is just quoting someone else….

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?”….

I understand that many people define themselves as “mentally ill,” and accept a medical model. If you do this, that is your choice. I respect you.

However, at this time, the “medical model” is dominant. The medical model has become 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….

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!….

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 in 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….

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. Look at all the permutations of language for African Americans just in the past century.

Linda J. Morrison, PhD

Mental health academics, such as Linda Morrison, PhD with her dissertation-based book Talking Back to Psychiatry, have even written treatises exploring the history of our movement’s ongoing wrestling match with language.

Why bother to replace “mentally ill” with something else, with anything else?

• We can show we are at the very least trying to listen to psychiatric survivors (like me!) 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 because of the current dominant paradigm in mental health.
• We can show we are trying to care, and that we too seek a nonviolent revolution in the mental health system!

So please, become a pioneer, and together 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 what is called “normal,” are not forced upon us God-given by the heavens, but are constructs that we mortals all co-create, in our imperfection, in our freedom, together.

David Oaks is currently working on a revision of his “Let’s Stop Saying ‘Mental Illness’” article which will soon be found on his davidwoaks.com blog.

My Reaction To Dave Oats’ Perspective

Mr. Oats is by no means the only one who dislikes the mental illness label.

Emma Barnes

We can see this plainly when Emma Barnes, the author of the article, “Neurodiversity Is a Scientific Revolution,” asked a group of people who view themselves as neurodiverse, “What do you feel when someone suggests you’re ‘living with a mental illness?’” They replied:

“Eye roll until my face turns inside-out.”

“That makes my stomach drop, extremities tingle, and ears ring.”

“I feel discounted, belittled, shamed & surprised.”

“I feel the RAGE.”

“It makes me feel like I have to explain things very slowly with very small words. I tense up, I experience irritation.”

“I’m never gonna talk to you again if you say that.”

“Shut down, like the lid of a box is closing on my head.”

“Frustrated, alienated, defensive, tense.”

“I feel dread, a sense of tightness and unease in my body.”

“Angry, rejected, tired as all hell.”

“I feel discredited and written off, like all my accomplishments are nothing. Like I’m just some crazy person.”

“Nauseated. Critiqued. Dismissed.”

“Oof, immediately activated and sick tummy, like I want to run.”

“Nauseous, pissed, unseen, dismissed, bullied.”

Ms. Barnes goes on to say:

These people are writhing against “the Personal Tragedy model” of neurodisability. I share their discomfort at being labelled “ill”. Although I experience distress acutely, I don’t have a disease, a bug, or an error. I have a body. I have a nervous system. And just like everyone else, when my circumstances are untenable, my body protests.

Jeffrey Rubin, PhD

To me, if I hear that someone views themselves as being neurodiverse rather than having a mental illness, I have no problem with that. I look to find ways to treat people with respect rather than to demean them with terminology they abhor. But my personal dislike with the mental illness terminology extends well beyond the respect issue.

Most people who have come to believe they have a mental illness believe so because they were given a mental disorder “diagnosis” by a psychiatrist or other licensed mental health professional. In our society, a mental disorder and a mental illness are largely viewed as synonyms. My major objection to the word “diagnosis” when used to label someone as either having a mental disorder or mental illness is that the designated patient typically comes away thinking the doctor now knows what is wrong. They think, “The reason I’ve been feeling depressed is I have Major Depressive Disorder,” or “The reason I have high levels of anxiety is I have an Anxiety Disorder,” etc.

This is terribly misleading. The “diagnosis” system was created by psychiatrists funded largely by the pharmaceutical industry which has a financial interest in labelling as many people as possible. Rather than a real diagnosis system, it is just some medically sounding words that these psychiatrists agreed to use whenever a patient answers a series of questions in a particular manner. The label does not indicate the mental health professional now knows why the patient is dealing with the expressed concern that led to seeking help. It is just a label masquerading as a diagnosis, in contrast to when a doctor declares a diagnosis after determining, for example, that someone with high fever and sore throat has a covid virus in his or her system. In this example, the diagnosis is a covid virus infection. Here the doctor knows the reason for the high fever and sore throat.

In my opinion, whenever professionals think they do know why the patient is experiencing the concern that led to seeking help, the professional properly would say, “My theory of why you are dealing with this concern is….”

Human beings are way too complicated for anyone to declare with certainty knowing the reason why someone is experiencing the kinds of concerns people seek help from mental health professionals. The language I advocate for, by being framed as a theory rather than a diagnosis, would go a long way from preventing the dishonest type of communication now regularly employed in our mental health system.

My Best,
Jeff

Some people will enjoy reading this blog by beginning with the first post and then moving forward to the next more recent one; then to the next one; and so on. This permits readers to catch up on some ideas that were presented earlier and to move through all of the ideas in a systematic fashion to develop their emotional and social intelligence. To begin at the very first post you can click HERE.

David W. OaksMental illness diagnosisPsychiatric survivors