David Romprey walked up to me one day when I was in the middle of planning the next new 16-bed facility in a community setting for people who were in our state hospitals in Oregon. Progress was in the making.
He asked why I called these places 16-“bed” facilities. Answering matter-of-factly what seemed obvious, I replied that these residences, nicely furnished in pleasant neighborhoods, had 16 beds. Looking me straight in the eye, as he always did, David asked me, “Do you think we’re lying around prostrate all the time?”
“OK, David, you have me.”
And not for the first time with this incredible advocate who had once been locked up in a forensic hospital himself.
The words we use are important in shaping our view of the world, of people, and of residences. This got me thinking more about terminology and the many ways in which we in the field of mental health have seen “them” lying around prostrate all the time.
Let’s start with the distinct difference between a patient and a person. There is no doubt that many will protest that a patient role is exactly what gives dignity to time honored professional relationships. The doctor cares for her or his patients. What’s wrong with that? The answer for a changed paradigm would be that “patient” too often has meant a relatively passive role in which the professional treats, the patient receives. That leads to another distinction.
A raging debate brings another set of words to consider. Do people “suffer from a mental illness” or do they “recover from mental health challenges”? Is this all about a “chemical imbalance” or are what we’ve called mental illnesses more accurately understood as a “normal reaction to abnormal situations”?
When these words come up in discussions—which, in my opinion, are far too infrequent and usually heated–the defensive polarizations on both sides divide rather than open dialogues.
Do we diagnose rather than seek an in-depth understanding with each person of “what happened”? If we listen, we will hear many voices who feel they’ve experienced far more of the first and not enough of the second.
Are we seeking “stabilization” or “recovery?” Do people we’re listening to really have “Serious and Persistent Mental Illnesses (SPMIs)”? Are serious mental illnesses in contrast to comical illnesses? Do “Chronic Mental Illnesses (CMIs)” predict ongoing disability for everyone with a diagnosis of schizophrenia? The best long-term research on outcomes contradict this as a general rule. Even worse, should we refer to real people as “SPMIs” or “CMIs”? Do these terms impersonalize and discriminate? In my last professional positions before retirement, I asked staff to stop using these terms and reconsider them in favor of “people with mental health challenges” who are capable of recovery.
A person active in the process of recovery doesn’t fit very well the image conjured by the almost universal use of the term “consumer.” I still hear many people in the movement toward recovery refer to themselves as consumers. My hope is this will change—I keep visualizing a person’s wide open mouth just waiting to receive the next dispensation, or pill, or other forms of “treatment.” Is our work together all about “compliance” (with medications or other treatment)? Showing up for appointments? Reality for some who have crossed legal lines (usually as a result of alcohol and drug use) is that compliance is written right into diversion agreements to stay out of hospitals or jails or prisons. Aside from these circumstances, would we be better off thinking about “optimizing” medication or other forms of treatment?
For some time, advocates have objected to the term “case management” saying that they are not “cases who need management” with a strong preference again to be considered “people active in recovery.”
One could go on with contrasting terms: “Treatment plan” vs. “Recovery plan.” “Peer supports” vs. “group therapy.” “Auditory hallucinations” vs. “Hearing voices.” “X number of bed facilities” vs. “community residences for x number of persons.” Some of these terms we are going to have to use for various reimbursement and licensing purposes. But could we advocate at some point to revise Medicaid law to shift from “medically necessary” to “health necessity”? Could we be blunter about “stigma” really being a form of “discrimination”?
Finally, is anyone who is uncomfortable with the terms used in traditional and mainline psychiatry “anti-psychiatry”? My hope is that reflecting on the words we use will lead to a productive and ultimately progressive conversation and that we agree to disagree at times. But ultimately find our way toward evidence-based approaches to recovery.
Excellent article. I sometimes have a hard time with this. I have spent hours in anguish after posting something that had a word or phrase that I later on decided was politically incorrect. It would be nice to have a vocab list of best choice words!!!
I find the tabla rosa of the screen difficult to navigate. If only there were a retract button. My guess is I am not alone in this. sometimes our word choice is not well thought out and bloopers happen. We know what we want to say but phrase it in a poor fashion.
Even as a wordsmith I run into this. I value words but still run amok as we all do at one time or another. Being able to speak about personal reactions to others’ word choices if done in a gentle way can be a good learning experience for everyone.
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Good article. I agree that terminology is very important. That’s why I prefer “forced drugging” over “involuntary treatment,” etc. Too often, bad policies are smoothed over by politically correct terminology. I think we’re all better off if we say what we actually mean.
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Bob, thank you for addressing this important issue (and for the great illustration via David Romprey). And I too hope more people stop refrring to themselves as “consumers.” Anyone who is at risk of being taken off in handcuffs by the police when they’ve committed not crime is certainly not a “consumer” of anything.
I would add: if there is no “illness,” what are people “recovering” from? Or are they healing from abuse and growing? If there’s no “mental illness,” than how can there be “mental health?” So my own language choices come from the fact that I don’t think people experience “mental health challenges,” I think they experience extreme states or they learn to substitute coping strategies thta bring them unwanted negative attention with coping strategies that work better for them.
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Excellent article. Thank you for articulating a critically important point; the terms we use in mental health care define the issues. Certainly describing someone with “chronic mental illness” is harmful in erroneously implying a neurological dysfunction and moreover that it is irreversible. I also agree that it is harmful to consider oneself a “consumer” of mental health services; this implies a passive role in addressing personal problems. Furthermore, erroneously defining (natural) emotional distress as a mental illness promotes a stigma that is discriminatory; thank you for equating stigma with discrimination.
Best regards, Steve
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Indeed, these terms all seem fraught with often shameful and damaging associations.
I’m all for colloquial terms: “Having a hard time at the moment,” “My head is a complete mess,” and,”My life is just all over the place and has been for years,”
Once you get beyond the discription of how someone feels, how they act, thier sutation and how it arose, as Lucy Johnstone descirbes in her articles on Formulation, what can you use? Mental distress is what I most often use and that is what another writer on here uses too.
And what of, “Recovery?” Well it sounds a bit suspect to me. I’ve got post viral fatigue at the moment and I’ve had it for over two months. I don’t say I’m, “In Recovery,” I say I’m doing quite well and things are slowly getting better. I might say that I’m slowly recovering and it’s a drag how slow it is. But then I suspect, “Recovery,” was developed by service users/survivors as a reponse to professionals who told them that they had life long conditions and they would have to get used to it. My mental distress if usually mild to moderate but fairly persistant but I wouldn’t say I was, “In recovery,” from obsessive worries, or constantly falling out with my colleagues or feeling on edge a lot of the time. I’d say, “I was learning to cope with,” “thinking things through,” and other action orientated phrases.
I have a similar feeling about Peer Supporters. I don’t care who listens, tries to understand me and offers encouragement with whatever my perticular problems are just as long as they are able to understand and offer appropriate encouragement (Duh! how obvoius is that?). I’m not too bothered if they learnt how this from reading it in a book or having gone through something similar themselves.
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Amen!
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“Do you think we’re lying around prostrate all the time?” I think this is often expected. For example, it was explained to me by my psychiatrist when I was hospitalized in 2010 that I couldn’t go outside for a break because “if I was well enough to go outside, I was well enough to leave.” I was lying around all the time in my bed, because I was too drugged to get up. Patients who were prostrate were the desired type of patients there. I agree that words matter because the words we use can lead to people being treated with more care and respect. I think removing the term “bed” as if psychiatric patients were bed fillers would be a good idea, or at least recognizing that it’s a trigger for people who have been treated as nothing more than bed fillers. I’ve heard rumors that hospital administrations use “bed” as term for a unit of profit and employees are often pressured to quote “fill the beds.” I’m initially coming up with “a facility to support 16 people.” I looked on the Betty Ford Clinic website (first upscale place that popped into my head) and they call them “residence halls.” Nice article!
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