August 30, 2012 at 5:53 am #18103Laura DelanoKeymaster
I’ll be running a workshop at the MindFreedom 1-day conference in Philadelphia on November 1st about this topic, and figured it would be a good idea to start a thread. I’m copying and pasting something I just wrote in a comment on the ‘Launching Beyond Anatomy’ post:
I haven’t used the word “consumer” in a long time, because in my opinion it perpetuates a power dynamic that I see as inherently oppressive and damaging to human dignity. To call a person a “consumer” implies either literal consumption (i.e. of psychiatric drugs), or economic consumption (i.e. of “mental health” services). To be defined by either of these two things is, in my opinion, to be reduced to a role as a passive recipient, a dependent; a person with unfulfilled needs until they are satisfied by whatever it is they are consuming from a “professional” source.
I actually have been struggling a lot with phrases like “mental health”, “recovery”, “wellness”, “peer” (full disclosure— I currently work as one, although I have no “formal” training, i.e. CPS), because I believe they perpetuate a medical paradigm. To me, “wellness” implies “illness”; “recovery” implies that someone has gotten better from a sickness or abnormal condition; and using the word “peer” in this context perpetuates an otherness, as though there are those of “us” who have been labeled, and then there’s everyone else. Of course those of “us” who have been labeled have experienced trauma and oppression that those who are unlabeled haven’t, so we share a common bond, but in my opinion the only “peer” I feel like I am is a human one.
Thoughts on what words, if any, to use? In my opinion, the true dilemma is that we feel a need to label experiences in the first place, but is that an unavoidable part of being human?August 30, 2012 at 1:34 pm #18127mjkMember
The terms / words I’m currently having to “deal with” are: “blonde”, “imbecile” and “lunatic”. This is one of too many reasons why I live alone in a box.
Call me poor, dear darling – there, there. Call me child. Call me loveless and lifeless – they’ve spilled all my blood. Call me sheep or lamb or maybe a pig, who survived the slaughter. Don’t call me a survivor anymore. Call me faceless defaced, nameless disgraced and call me scapegoat. Call me used and denied. Call me twisted, from all the evil lies.
They call Mark “bishop”. That’s this week’s news. They’re calling Mark “bishop”.
I solved a dilemma last night by saying goodbye (again) to Emma.
It is all much too personal. This is so inappropriate of me.
Let me rhyme and string poetic
Let me flow and sway
As I wobble woozy
From the talk sick city
In this state of audacity
3 days dark is an exorcism
I’m sorry Laura, I am not the one who has the answers but I sure can agree: “The Problem with Language” (and then some).
(end of self-expression)
Sigh. Let’s start at point number 1: “get help”, “you need help”.
The person then, is a “seeker”.
From seeker, I find “candidate”. From candidate, I find applicant, aspirant, aspirer, challenger, competitor, contender, contestant, desirer, entrant, hopeful, nominee, petitioner, runner, seeker, struggler. I hope the idea has been communicated sufficiently.
I love the thesaurus. Words that soar, please – no more words that sore, thank you (beep).August 30, 2012 at 3:59 pm #18150
I’m supremely glad you haven’t fallen for the “consumer” tag, Laura.
The word consumer, implies choice, especially in its widespread economic usage in broader society.
If I’m a consumer, or if I ever was a consumer, then someone being assaulted is a consumer of punches in the nose.
It’s all part of the co-opting of the movement.
The British term “service user”, is even more disgusting.
It’s very simple to me now at this point, if psychiatry isn’t real medicine, and its subjects aren’t in a real doctor patient relationship with a real doctor, all the medical language becomes NOTHING but a social ritual, which is what it is.
The phrase “enemy combatant” is used in the Obama/Bush “war on terror” to avoid the Geneva Convention protections when they want to torture someone in Gitmo.
The phrase “involuntary patient” is used by psychiatry to mask what is really going on when a person is forced into the mental patient role. After being saturated throughout society for generations, the word “involuntary” starts to sound like a reflex, an involuntary burp, or sneeze. It’s lost all the punch, it hardly even conveys the fact that aggression has been initiated against the person by psychiatry, and a forced relationship founded of violence has been formed, just as in any violent, dominating abusive relationship that one party doesn’t want with the other, but has no choice.August 31, 2012 at 12:52 pm #18181Faith RhyneParticipant
“I actually have been struggling a lot with phrases like “mental health”, “recovery”, “wellness”, “peer” (full disclosure— I currently work as one, although I have no “formal” training, i.e. CPS), because I believe they perpetuate a medical paradigm.”
I know. It feels to me that even in my efforts in defined myself as separate from psychiatry and all its trappings, that I end up with words that still define existence in relation to the systems that I am seeking autonomy from.
This is my big issue with the term Peer lately. I really clung to that label for a while, because it felt like a good conceptual stepping stone in my process of redefining the value of my experience.
However, it is still state-assigned and designates a particular role within a system of ideas and practice that I really feel loathe to associate my core identity with. Further, like so many words that seek to capture the shared experience of a diverse group of people, it says absolutely nothing about the people whom the term is applied to, and creates diminished value in signifying one’s constructed place in relation to an oppressive system.
“Peer” is – I suppose – useful for job titles, which do require description of a role and function, but I find that I do not say, “I’m a Peer.” so much as I did, as my role and function within my life and within the world expand far beyond my low-wage work in a mental health setting.
I like “a person with lived experience” as a descriptor. It actually cracks me up, because we all have lived experience, in some form or another.
I am deeply interested in determining frameworks of language and meaning that undermine the tendency to define ourselves in relation to systems*…words that speak to the rich diversity of subjective experience, and which honor people’s individual stories.
“Words that soar, please – no more words that sore, thank you (beep).”
I get that message, mjk. thanks for bringing poetry to this forum.
I think that, in these considerations of language, we are actually discussing the shift from a hierarchical modernist system of imposed classification toward toward the dissolution of fixed meaning. To me, the right to define one’s own experience without coercion and interference from oppressive systems of meaning and action is a basic human right.
*if anyone may be inclined to think that this is lofty or generalist, well, perhaps we ought to remind ourselves that far more than 1/2 of these words didn’t exist a hundred years ago, nor did the systems that created them…and, yet, somehow we’ve been persuaded to take them on as cardinal elements of our vast humanity?
How does that work?
In my mind, it doesn’t.September 3, 2012 at 11:28 pm #18328Ted Chabasinski, JDParticipant
Thank you, Laura, for starting this thread. The language we use is very important, and the system knows this .
Yeah, the word “consumer” doesn’t even make sense. But it is encouraged by the system. If you want to sell out and take a grant from SAMHSA, you better call yourself a “consumer,” or else. The word implies a benevolent system, offering us a choice of oatmeal or cornflakes, a Honda or a Chevrolet . What nonsense!
When I was torn from my family as a child and tortured with shock treatment, was I a “consumer”? I call myself a survivor because it makes a political statement. But ultimately we will be known as…human beings.
A little story about the word “consumer.” I was talking to my girlfriend a few days ago about the movement. She is the kind of member of the general public I think we should be trying to reach. She doesn’t have a psych history, but she is a progressive person who has of course heard a lot about our movement from me. I told her that some people called themselves “consumers,” and she laughed…and laughed…and laughed… I thought she would never stop. She said it was the most ridiculous thing she had ever heard.
And she was right.
Let the system use whatever euphemism they want, but we have to take control over what we call ourselves.
ISeptember 21, 2012 at 11:29 pm #19327Steve SpiegelParticipant
This is an important thread; organizing to change the archaic mental health system is important and language is a key element. I was with a group of people this week who seek to change the system, but several among us were still using terms like “mental illness” and “psychotic break”!
My frustration centers around describing my experience with emotional distress, or was it mental distress? I like the term mental distress; it seems to convey my experience the best, but emotional distress seems to be more popular. Unfortunately, neither term seems to imply the degree of mental pain and the degree of problems with living that the erroneous term “disease” currently seems to imply.September 22, 2012 at 6:44 am #19333BelindaParticipant
The word consumer is the most insulting one I have ever come across. I would much rather be called patient, client or service user. I was a patient, when I was so drugged out I could not do anything. I was a client when I was engaging with them on an unequal basis, and the fact is I did use services, so I was a service user. As for consumer, I NEVER EVER “consumed” services in any literal sense of the word. I used them I did not consume them!!
I struggle with the concept of survivor. To me it feels like I am still a victim. I don’t want to be a survivor, I just want to be a person. But the fact is I am and always will be a survivor. And not all do survive and come out with a brain still quite functional!
I do not like the word peer. A peer is someone I am equal with and I struggle to believe I can ever be equal with someone who is paid to be with me. How can someone be a peer when they paid to be with me or are seeing me purely to help me. To me a peer is a friend, someone I am equal with. Peers are those in the same class at school, in the same level at collegue or the like. I have never found any useful peers in mental health circles, mind you I have never found any who did not tell me how dangerous it was to stop taking medication. Most were worse than doctors, in their reliance on the system. The lived experience is also something I struggle with. What does it mean. The last person I met with a lived experience had been diagnosed with a General Practitioner with depression and was cured in 6 sessions of CBT. To them it gave them expertise in how to help everyone else. And of course if they had not been cured with CBT they would have very happily taken drugs. They saw nothing wrong with involuntary treatment, hospitals were not prisons, that is a part of my illness talking they are hosptials, just like normal hosptials with doctors and nurses to help you, and are world class!! What qualifies as a lived experience. If I had someone who had positive experience s of hospitlisation I might respect it more, it is a real experience. But I could not classify as what this person had been through as a lived experience of any relevance to anyone I have met or communicated with in the system. To clarify he became depressed when the company he had been working with for 20 years folded. He became unemployed and was ashamed of it. He was referred to an employment service, and since it was not possible to get in work in his previous roles, they needed to find a new job for him. They had recently had a talk about mental illness and how peers helped in the recovery of these people. He had had depression and so he was put forward. He seriously believed that he could do well in this role, and that he was more than suitable for it. It was not about finding any job, he was perfect for this job.
One thing I really struggle with is the constant talk about everything they do as “treatment”. How can you treat something that does not exist. Even psychotherapy is a treatment. Do we need treatment? Are we somehow diseased?? People talk about needing better treatments and more choices for treatment. I struggle with that. I do believe that generalist counselling, having an independent third person, trained to listen to you respectfully as valuable. I find CBT incredibly abusive, and would rather be drugged than given CBT.
And I struggle to call any place that locks someone up against their will and forces toxic substances into them as anything worthy of being called a hospital. I have not been in a hospital for physical means since I was 9 months old. Obviously I don’t remember it. I have recently spent time visiting a friend who had a stroke and was amazed by the constant stream of nurses into the room, the respect of the nurses, which he also praised, the responsive care, doctors regularly around the ward, treating doctor seeing patient at least once a day, etc. My experience of psych wards is that staff never come out of nurses stations except to drag people off to the seclusion room. Bells are rang at regular intervals for us to line up for med’s. Not be present and you are put in seclusion. They never interacted, doctors were lucky to see you twice a week, etc. And of course everyone was stripped naked and sedated before being put in seclusion without any toilet facilites or the like. Just a bare concrete room. If you were lucky there was a mattress on the floor. If you were extra extra extra luck yand getting five star treatment, you got a blanket and a bucket to toilet in. Even prisoners have more rights and better treatment than that?? Couldn’t even call it a prison though, as they have minimum standards they have to meet and psych wards would NEVER meet them.September 23, 2012 at 10:12 am #19458Copy_catParticipant
Doublespeak is language that deliberately disguises, distorts, or reverses the meaning of words. Doublespeak may take the form of euphemisms (e.g., “downsizing” for layoffs, “servicing the target” for bombing ), making the truth less unpleasant, without denying its nature. It may also be deployed as intentional ambiguity, or reversal of meaning. For example in “psych-speak” calling coercion “assistance”.
Mabey adding the natural english word following the “psych-speak” in ( ) .
Example: The assisted outpatient treatment program (forced drugging) is now including people who… to teach the reader the real meaning of psych-speak words.
Sometimes writing here is difficult because of my ADD (hunter genes) and I get distracted by things like rabbits I see out the window.
What was I doing ? Oh ya, how to teach consumers (people) to see through psych-speak for the scam it is.
Seclusion (solitary confinement) may be used as a control (punishment) tactic in psychiatric treatment settings and includes…September 25, 2012 at 10:16 pm #19655
I’ve also never been quite clear how to refer to myself as for many years – I saw no doctor (therefore not a ‘patient’), used no services (therefore not a ‘consumer’) , had no contact with with my counterparts (therefore not a ‘peer’) and bared no particular grudge against the system (therefore not a ‘survivor’).
I have co-opted a term from the overtly politically correct world of physical disability: ‘sanity-challenged’ which I use sometimes when talking to the ‘doctoral providers.’ I have always enjoyed a term Fred Frese uses to describe people without psychosis experience: “chronically normals.” I occasionally also refer to them as ‘the 99%’ and to myself as ‘the 1%’
And then there is issue of how to refer to the ‘symptoms’. I use at least a dozen different words for ‘delusion’ (just like an eskimo does for ‘snow’).
So yes, the lexicon of the English language unfortunately lacks a suitable term to describe us. But that’s okay, because being the neologicians that we are, we can certainly concoct one ourselves! 🙂September 25, 2012 at 11:07 pm #19656
Oh survivors of human rights atrocities are “grudge bearers” now are we? Nice.September 26, 2012 at 2:48 am #19657Ted Chabasinski, JDParticipant
“Grudge bearers,” yeah, right. While I don’t think we will ever find the exact right word to describe ourselves, survivor seems like the best description around just now. The thing is that some people are afraid to express anger (which the word survivor in this context certainly does). Yet they are very unhappy with what was done to them.
It has always been very common that people in power demand that those they oppress not be angry, else they will be labeled as being in bad taste or somehow just not one of the better class of people. Well, I’m not one of the better class of people and I never will be. I want to change society so others won’t have to experience what I went through. I can’t accomplish much if I pretend that things weren’t really so bad.
They were bad, they are bad, and we have to say so.September 26, 2012 at 7:44 am #19658
This is exactly right. Brain is brain rape, and brain rapists are brain rapists. And anyone who’s ever raped another person’s brain, belongs in prison.September 26, 2012 at 8:40 am #19660EmilyParticipant
Now that I’ve gotten sober from psych drugs I can see that my “severe mental illness” was induced and maintained by my psychiatric care and treatment.
I see myself as a survivor (it was never forced but it sure was coerced under false terms and information), a former patient (I served a lot of time being “sick” when I could have been doing better things with my life), and a post-consumer (I swallowed over 30,000 psych pills, so I was a big consumer). I am a compatriot to all the diagnosed and drugged people out there if not exactly a “peer” because I don’t think my life circumstances, talents, interests, personality or any other defining traits necessarily coincide in that I don’t believe in a mentally ill crowd as definably or distinguishably separate from a sane crowd. I don’t identify with having “mad pride” though I admire those who do. I identify with being lied to about my health, exploited for others’ profit, power, and prestige, and being drugged senseless.
I’m anti-psychiatry as I see it as being a belief system more than a science. And a false one that inflicts great harm on individuals, families, and society at large.September 26, 2012 at 10:40 pm #19783
This is the ultimate problem with the language of the mental health advocacy field – it has no way to account for the majority of the total global population (i.e. those living in under-developed countries and due to a myriad of other circumstances) who have these ‘conditions’ – but simply have no contact with the ‘mental health system’ for them!! (Hence why we cannot be called survivors as we have not experienced the system – or at least not in any way that was perceived to be threatening or traumatizing). What do we call ourselves? Persons with _________. Mental illness? Our diagnosis name? Those are all medicalized terms and presume contact with a medical system. Most pre-modern cultures have their own descriptions for these experiences (which overlap more with the experiences the ‘normals’ can have occasionally as well – such as hearing voices, communicating with the spirits, etc.) Perhaps it is time for English (and the rest of the industrialized world’s langauges) to adopt a more embracing term as well.September 26, 2012 at 10:55 pm #19784
And the definition of “grudge” is:
n. a feeling of ill will, dissatisfaction,or resentment
v. to give or permit with reluctance; submit to unwillingly
Thus a grudge barer is one who has a feeling of dissatifaction or resentment for having had submitted to something unwillingly – which fits the descritpion of a mental health system “survivor” quite aptly.
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