I sometimes am stupid with words. I forget how important it is what you call things and am frequently guilty of using what others tell me are the wrong words. Mental illness is one of those words.
Part of the problem is that the word doesnt mean the same thing to everyone. I know many people who dont understand what the problem is. In their eyes that is what it is. The see terms like “mental health challenges” and similiar terms as being “political correctness” and dont really see the point. In their eyes the key distinction is between having a mental illness and being mentally ill. Many consumers have told me they have a mental illness, but feel strongly that having a mental illness does not define who they are. In their eyes, the key is not what it is called, but rather or not it is seen as defining who they are.
I have met many people who see the term as a non stigma term. In their eyes it removes the scorn normally accorded emotional problems, because the term means that they are not to fault. Mental illness is something that happened to them, but not something they are to fault for. Its like saying addiction is a disease. The paralell is real clear. And in their eyes, since mental illness is something that “happens to them” then it is possible to do something about it. The key becomes not what you got, but how you cope. These folks define themselves by their recovery and not by their illness.
I had one person tell me there was no such thing as mental illness because there were “no hard signs” and no tests. He said that it was an unproven assertion by a medical/pharmacological community intent on the control of the people it “serves.” I told him that he was right on one assertion and wrong on the other. Saying mental illness is a myth because of lack of some test is a little like saying there was no AIDS until they found the HIV test. There a whole lot of folks miserable for some reason and arguing about what to call it doesnt make it any less miserable or any less real. As a friend told me, “It’s like saying there is no such thing as bullets, because you have never been shot.”
On the other hand when you move from the area of personal meaning to the social meaning it is clear that the term is used for control. Whatever way you describe it the truth is basically clear. To be told you are “mentally ill” is to be told that you are somehow a diminished person. It is said in a thousand ways, both said and unsaid, but it is said. Every mental health consumer I have ever met can identify the look they get when someone finds out they are “mentally ill” and everyone can identify how it has changed the way they are treated.
Many people have told me contrary to what others believe the term mental illness means no hope. It says that you have something that can only be “medically treated” and that regardless of what you do it will always be there. They particularly object to the idea that medication will forever be part of their lives. They further point to the ways that the label mental illness has been used to justify mistreatment and the loss of someones rights as a human being.
It seems clear to me that labeling someone mentally ill has consequences in their life and almost all those consequences are bad. So what does this all mean?
I talked to a friend who “has bipolar disorder” and he explained his viewpoint:
“We need a new word, but I dont know what it is. I hate the politically correct people. What I face on a day by day basis is far more than “challenges”. It is an invasion, an armed invasion that puts my life and everything that is important to me in danger. And I want people to know that. Whatever the new word is I dont want them to make it sound too “clean” because it is not. It is way past real….On the other hand, I hate the whole idea of “being crazy.” The problem is bad enough, but the “solution” that many people like makes it worse. Like I have heard you say before we are all more than what we are called, but if you are called “crazy” that is all people thing you are. I have a real sense of hope in my life, not because I think it will be easy. It never has. But because I think it is possible if I learn enough and I use what I learn, if I become an expert on me, for me to have a lot better life. Larry, I read something you wrote one time and that is really what I want people to know. You said people with mental illness were “ordinary people coping with extraordinary circumstances- some of it internal and some of it external.” That is what I believe I am. An ordinary person coping with extraordinary circumstances who must do it every day to have the kind of life I want to have and the kind of life I believe I can have.
I think mental illness is a ruined word. For many people I know on a personal level it implies the seriousness of their personal predicament. But the same people despise the social role it places them in. I dont know the right word. I would like a term that describes the seriousness of the problem, but at the same time shows dignity of those who struggle and the real possibilities they have for a good life. But at the same time I would like for people to realize that no one is simply what you call them, and that there is no magic term. Labels are not true or false. They are useful or not. And we need to find another word. I dont know what it is. So probably I will use several words depending on what aspect I am talking about. I have a friend who describes himself simply as “having mental health issues” and right now that probably makes as much sense as anything else.
So for me I will try to do better. I will try to use words that are not so ruined. From time to time I will probably mess up and use the word mental illness, but my intention is to do better. Many of the most courageous people I have known are mental health consumers and I certainly have no intention of stigmatizing them in any way. I would love to hear your ideas about better words and I hope you will share them with me. And I hope that whatever we call it we can all work together to build a system and a culture that helps those who deal with misery in their life to know that they count and that the promises of a better life can be real for them too.
August 16, 2009 at 7:41 pm |
[...] when I wrote a comment discussing two posts: ‘What diagnosis depends on‘, and ‘On the words we use‘. The subjects were diagnosis and semantics in mental illness. Important subjects. Since I [...]
August 17, 2009 at 4:10 pm |
This may be among the top 3 issues we, as a group, face. ‘People with mental illness,’ ‘consumers,’ ‘survivors,’ or whatever term we use has consequences. The splits we have among ourselves over what words to use has allowed our causes to be undermined and the progress we’ve made in the last three decades to be blunted. We are squandering that progress and the efforts of so many who have come before us.
The term ‘behavioral health,’ for example, is one of the more insidious labels to come to use in common memor. Despite obvious strong feeling among our community, Virginia has decided to recast its mental health programs as behavioral health programs and its Mental Health agencies as Behavioral Health agencies.
Despite claims to the contrary, this change was shoved down our throats while several arguments ensued among us over what we shall call ourselves. These arguments gave cover to the state. It could claim there is no agreed upon terminology so it was able to just make changes as it sees fit, though it did go through the motion of conducting a false survey on its website. I call it false advisedly. The vast majority of consumers were unable to take part in the sham survey either because they didn’t know it was going on or they didn’t have web access. Of four pre-selected survey choices for the name-change three contained the term ‘behavioral health.’ On the face of it, it was not a true and fair survey.
I consider myself a ‘survivor/ex-patient’ but use ‘Consumer’ for purpose of group identification because there is a lot of strength in the term. The point is that there is a difference between how I identify as an individual and how I identify as a member of a collective group. I don’t think we’ve clearly made the distinction among us. We’ve fallen into the very trap we insist others avoid. We see terms as being exclusive. If I am a consumer I cannot be a survivor. If I am a survivor I can’t be an ex-patient. I must always be addressed as my chosen description whether the addressor knows what that choice is or not. I become exclusively what I will be called so I must be called what I declare.
We take great exception to a poorly chosen term and rightfully so. We also strive to honor how others choose to identify themselves. We are loath to even suggest to others what terms to use. This attitude is borne on the history of others’ labeling us and imprisoning us in those labels. Memory of the terrible, almost unspeakable things done to us as ‘lunatic,’ ‘mad’ or ‘insane’ give enormous power to our wanting to protect ourselves from ever being such victims. But almost every day one of us is shot or otherwise killed because of the fear and ignorance of who we are. We are killed by those whose job it is to protect us. Because of fear and ignorance, their first instinct is that others must be protected from us. Despite our best efforts, they still have their own disparaging labels for us, though they would never publicly acknowledge them. We all know that.
It’s why many of us feel stigmatized even by the benign and more descriptive term ‘mental health.’
‘Behavioral health’ is a term that allows this ignorance to flourish and to rule. It is used to describe us and we simply accept it. Despite whatever the intent of the ‘behavioral healthists’ may be, the implication for most people is that, if we just learn to behave ourselves, we’ll be fine. The next thought is that behavior is controlled by morality so we must be morally fixed for our own sake and the sake and safety of others. If we won’t control our own behavior it must be controlled for us. This philosophy has returned repeatedly throughout the history of mental health treatment and has led to the most horrible things we remember about the ‘old methods’ of that treatment. Ironically, despite being the converse of the ‘brain function’ approach, behavior healthism goes hand-in-hand with ‘brain functionalism’ in that it leads to a control approach that flies in the face of true recovery. Of all the terms bandied about this is one I fear.
So I believe we do ourselves a disservice when we remain passive in order to not to appear to force labels on others of us. While I honor whatever one chooses for identity, I find labels like C/S/X to be counterproductive. It immediately expresses a diluted influence. Of the three groups, which one can be said to be speaking at any single moment? In fact, much of the language is being changed to describe us a the ‘individual’ seeking or receiving services. I am a unique individual, as is each of us. But this language doesn’t honor me. It isolates me. It allows the rejection of any individual voice because an individual is one person. One person can easily be ignored.
I see some who put themselves forward as leaders of our movement (and it is still a movement) failing or refusing to enter the debate for whatever reason they may give. I believe the debate has been poorly framed and therefore unable to move forward. The question is not what we should call ourselves. It should be, under what banner do we come together for cooperative action?
While we all honor and seek to have honored those things we call ourselves individually, we should stop the dilution of our collective influence by insisting only on narrow self-identification. We should re-embrace the name Consumer for our collective efforts and join ourselves to those efforts as ‘survivors,’ ‘ex-patients,’ ‘benefitting from lived experience’ or whatever each of us feel is right.
We achieved unprecedented gains as members of the group called ‘Consumers.’ As Consumers we have a strong image whose influence exceeds even our total numbers. As Consumers we have forced those who would ignore us to pay attention. As Consumers we have been able to be inclusive so our achievements could be shared with the broad array of individuals that we all recognize as being part of the whole. As Consumers we draw from the strength of all who would join us whether they call themselves consumers, psychiatric survivors, ex-patients, non-chronically normal or any other name. As Consumers we created the environment that brought legitimacy to all those names.
I have no affinity or affection for the word consumer. In fact, the name Consumer doesn’t describe anything about me, my recovery or the issues I deal with everyday. But, to me, the collective name Consumer signifies a group I’m part of and one that makes me feel safe. It’s already established, respected and assumed to include us all. As a survivor/ex-patient I wouldn’t force any label upon anyone. I would defend anyone against anyone who would. But I know the power of an established identity and the difficulty to replace it with one of equal, or even similar power.
So, rather than impose anything upon anyone, I’d call for all of us to embrace individuals for who they are and how they want to describe themselves. I would call for all of us to join the group we call ‘Consumers.’
Invite them all to become part of a group called Consumers because words have power. What we call ourselves has consequences.
August 17, 2009 at 6:28 pm |
This is absolutely great. Your points are well taken. I like your distinction between group and individual identity.
August 19, 2009 at 11:16 pm |
[...] of the Hopeworks Community blog. (One of his posts talked about diagnosis, and the other about semantics.) If one were to compile Larry’s work with my essay and the conversation between Marian and [...]