Words. They matter.
When I was doing research inside the U.S. Penitentiary in Leavenworth, Kansas, for my book about everyday life inside a maximum security prison, I learned to select my words very carefully.
This is because I was in a prison where what you said or didn’t say might get you stabbed.
The importance of words could be seen even in casual conversations. For example, prisoners called their keepers “guards” or something worse. They referred to themselves as “convicts.” Prison employees referred to themselves as “correctional officers” and to their charges as “inmates.”
Using the wrong term in the wrong crowd was considered disrespectful.
The words we choose when discussing mental health are also important. My friend Trudy Harsh wants to banish the term “mental illness” replacing it with – a more stigma free term – “brain disorders.”
I’m not sure why (and I wish someone would tell me) the term “consumer” has become the politically correct word for persons with “brain disorders.” Every time I submit an Op ED piece to USA Today or the Washington Post, an editor will ask me why I am using “consumer.” In most cases, that editor will change ‘consumer” to “the mentally ill” which is, of course, offensive to many because it identifies people by their disorders.
Sadly, I am guilty of using offensive language in my book CRAZY. I chose the title well before the book was written and researched, and I chose it as a play on words since our fragmented mental health system is, indeed, CRAZY. I never meant for it to refer to my son or others with mental disorders. But it ended up offending some of them anyway.
I also used the term “mentally ill” throughout the text because when I wrote the book, I didn’t realize why that term was dehumanizing.
The Hogg Foundation in Texas issued a booklet recently that identifies what it calls words that ” label” and “stigmatize” and words that are “people first language.” Some examples are obvious. Saying someone has a “mental health condition” or a “mental health diagnosis,” is preferable to saying that a person is ” psycho, insane or a lunatic.”
The booklet contains a quote from – who else – Mark Twain — about the importance of language. “The difference between the right word and the almost right word is the difference between lightning and the lightning bug.”
It takes a long time to change habits and language. But it can be done. I remember when it was permissible in newspapers to use the words “policeman” and “postman” rather than today’s sexist-free “police officer” and “postal carrier.”
Changing our language can decrease stigma.
So tell me what you think. Does anyone out there also feel the word “consumer” isn’t our best choice? What word would you use to replace it?
If people who care about mental health reform don’t speak out, then those who don’t care will be the only persons talking. So make your voice heard.
No, that’s not Mark Twain. That’s me. But it’s just as true.
About the author:
If a person with Schizophrenia or Bipolar Disorder or Major Depressive Disorder has a neurobiological illness, then that person is a “patient.” If we are hoping to reduce stigma and help people understand that there are brain disorders and kidney disorders and heart disorders, then the word “consumer” is not a good fit. A person with cancer is not a “consumer” of oncology services. When seeing a psychiatrist, you are a “patient.” If you are seeing a therapist, social worker, case manager, perhaps the term “client” would be OK. Interested to hear what others think.
I completely agree Tgskale. My daughter was in the hospital not too long ago and had a new case manager. She tripped all over herself because she accidentally called my daughter a patient. I said she’s in the hospital, she IS a patient! But I’ve said many times what you just said. My daughter sees a psychiatrist who is a doctor and that makes her a patient. However, when she goes shopping, she is a fantastic consumer…LOL.
I wish we just used the diagnoses without defining them further by saying mental illness unless you’re educating. My daughter has bipolar disorder, period. If someone didn’t know what that was, I might then further explain that’s it’s an illness that affects the brain. But somehow we’re in this thing where we distinguish schizophrenia & bipolar disorder as mental illnesses and other illnesses like diabetes as physical illnesses. I think that distinction is what created the stigma because it has fostered misunderstanding. I think it’s created the misunderstanding that “mental illnesses” aren’t true illnesses and are somehow the fault of the person who is just behaving badly.
As for “mental illness”… in terms of its abstraction level, it is the same level as “physical illness”. So if I am coping with cancer, I usually will say I have cancer not I have a “physical illness”. In our regular conversation, we do not usually say one has a “physical illness” as we tend to go straight to whatever label we have (diabetes, cancer, … etc) as mentioned by Lois Early.
So instead of coming up with something to replace “mental illness” we might just not use the term and go straight to the diagnosis as suggested in the earlier post.
I don’t get the “consumer” label at all, for the reasons above. No other kind of doctor has a “consumer.” Although @ Lois, I understand that studies show stigma has increased during the two decades that we have understood there is a physical cause behind psychiatric symptoms. Perhaps that’s because if it has a physical basis, the symptom is not an eccentricity or a transient misbehavior, but a permanent and fearful flaw in personal identity, the one thing we most need to rely on as a means of knowing one another.
I couldn’t remember an article on this subject, I think it was in an anthropology, social linguistic, or nursing journal somewhere.
Anyway, regardless of what term we use, interesting questions to ask are:
* What does the term highlights?
* What does the term hides?
* What is the intension of the term?
* Any unintended images communicates by the term?
* Any better terms that can communicate similar intent?
The intent of “consumer” is to convey power. Not as a passive patient (now the image of the term “patient” is actually changing given the power of the internet and it is losing some of it’s passive role where a patient just say yes to his/her doctor).
There are some problem with “consumer” however. One, it hides the suffering experience that a person go through and a term like “patient” highlights it instead. Although it highlights the power aspect, it can give an unintended message that a health care provider should respect a consumer b/c s/he has power, or power to pay for his/her paycheck. Now the obvious problem is that the health care provider might treat a consumer who has no insurance, a consumer who has medicaid, a consumer who has really good insurance, a consumer who is really rich very differently base on the ability to pay (and how easy it is to get pay as some insurance is harder than the other).
“Client” tends to highlight more on the partnership aspect of recovery as it is usually used in a therapy context. Talking about context, “patient” is more appropriate in hospital as it’s focus should be on relieving suffering. “Client” is more appropriate in a therapist office as partnership is usually highlighted. “Consumer” is appropriate if one is writing for a mental health organization as that is accepted jargon and everyone knows what it means and what it intended.
In the support group I go to, we prefer the term “coper” and “supporter” instead as we feel these terms are more descriptive since the families/friends are “supporting” their love ones who are “coping” with an illness.
In political correctness, we have to watch our attitude. We don’t want to set ourselves up as the supreme moral language police who judges everyone’s heart. Grace and humility should be primary instead b/c we too can make language “mistakes”. Humility is important because sometimes there are better terms than the current acceptable political correct term.
What else, take cancer for example, there is the term “survivor”. What does it not do? It does not highlight the recovery part where one wants to do more than “survive”, where one wants to go beyond “survive” and get on the road of recovery and build life. I am bringing this up b/c there are some movement to use the term “survivor” in mental health context also.
The best, in my opinion, is not insist on how I want to use a particular term, but ask the person or the organization what terms they prefer to use. Also explore what they want to highlight in their experience and explore any unintended images as a result of whatever language they have chosen to use.
Always “people first”. My first experience with “consumers” was when I worked with people with mental and physical disabilities. Consumers usually choose to consume. People with disabilities and illnesses do not make these decisions. They should be referred to and treated respectfully as people.
I am sorry that you are apologizing for your book title. I found it so refreshing! Is it the word that makes the ill person suffer or is it the illness? Since the 70s we have avoided all mention of mental illness.This has not changed things for the better for the sufferers.
My son was finally committed by a judge to the state mental hospital 2 years ago, after being ill for several years. My husband put the words ” asylum” in his GPS to identify his location. He pointed out that asylum is a good thing, a safe place. That was an apt description as it turned out. My son has hallucinations and delusions that cannot be controlled well with medication. In the state hospital he felt safe because he was in a very controlled environment. Unfortunately he could only stay 6mos-the maximum in TX.
I don’t care what words anyone uses. I only want help for my son. As for his feelings- he lives in his own world and communication to earth from there is extremely spotty.