What Should We Call People with Mental Illness?

11/09/2010 02:35 pm ET | Updated May 25, 2011
  • DJ Jaffe Executive Director, Mental Illness Policy Org

Guest Editorial by Dr. E. Fuller Torrey

In the current issue of Schizophrenia Bulletin, Dr. E. Fuller Torrey, the nation's leading researcher and advocate for people with mental illness wrote on the debate on what to call people with mental illness:

The Substance Abuse and Mental Health Services Administration (SAMHSA) recently invited a dialog about words that are used for individuals with various forms of mental illness and their treatment. For example, what should we call people with schizophrenia?...

...A logical starting point is to ask what schizophrenia is. ...Schizophrenia is a disease of the brain. It exhibits abnormalities of the structure and function of that organ, just as diabetes does in the pancreas, hepatitis does in the liver, and emphysema does in the lungs. Some skeptics have argued that the brain abnormalities observed in schizophrenia are secondary to medications used to treat the disease, but these same abnormalities are found in patients who have never received treatment. ... Given these findings, it seems logical to follow medical tradition and call people with such abnormalities people with schizophrenia. And if they have received treatment, they can be called patients.

Given what is now known, why should we use alternate terms such as ''client,'' ''consumer,'' or ''survivor''?

''Client'' is defined by Webster's dictionary as ''a customer,'' especially of legal or accounting services. It thus implies one who voluntarily seeks services. The term is widely used by psychosocial rehabilitation services, such as clubhouses, where individuals do indeed voluntarily seek services. In that voluntary context, it seems appropriate.

''Consumer'' ...conveys the idea that individuals who are receiving psychiatric services should have choices and should participate in the decision making, an important and useful concept insofar as those with schizophrenia are aware of their illness and thus able to make choices. Unfortunately, ...approximately half of all individuals with schizophrenia, ... are largely unaware of their own illness, deny that anything is wrong, and refuse all treatment. ...'Consumer'' is thus not a useful term for people with schizophrenia because it refers to only the half of individuals with this disease who are aware of their illness and it excludes the others.

''Survivor'' is... a term is used by psychiatric patients, not like ''cancer survivor'' but in a more menacing sense like ''rape survivor'' or ''Holocaust survivor.'' It implies survival of a traumatic event, specifically in this case involuntary treatment for a psychiatric illness. A major goal of (people who use this term), is to abolish all involuntary treatment. Such a goal ignores the needs of those individuals with schizophrenia who are unaware of their illness and who, because they are not being treated, are regularly victimized and end up homeless and/or incarcerated. Thus, ''survivor,'' like ''consumer,'' applies to only some individuals and is not all-inclusive. To use such terms ignores the needs of those to whom it does not apply and is thus a form of discrimination.

The latest term being used for people with schizophrenia and other severe psychiatric disorders is ''people with lived experience,''...being increasingly used by groups funded by SAMHSA. ...In reading the literature... it is apparent that most of the time the term is meant to imply that the delusions, hallucinations, and other symptoms experienced by individuals with schizophrenia are merely part of a spectrum of human experience. It is thus an implicit refutation of the medical model of disease. ...

Most individuals with schizophrenia, including those promoting terms such as ''people with lived experience,'' are receiving medical disability benefits such as Supplemental Security Income, Social Security Disability Insurance, and veterans disability pensions. ...Logically, if they do not believe that they really have a disease, they should not apply for, or accept, such benefits....

What about the term ''schizophrenic''? ...It has been prohibited by the SAMHSA word police and by some state departments of mental health that have decreed only ''people first'' terminology to be politically correct. Like ''diabetics,'' ''alcoholics,'' and epileptics,'' ''schizophrenics'' can usefully indicate a group of people with a common condition, and some individuals with schizophrenia refer to themselves this way. Thus, for some, it may be a perfectly acceptable term.

..It seems bizarre for one federal agency -- the National Institute of Mental Health (NIMH) -- to be supporting research projects to understand the causes of a brain disease that another federal agency -- SAMHSA -- is describing in discriminatory and misleading terms, especially because both SAMHSA and NIMH are part of the Department of Health and Human Services. Let us then propose that ''client'' be used only in the context of psychosocial rehabilitation services and that ''consumer,'' ''survivor,'' and ''people with lived experience'' be abolished from all federal publications when they are used to refer to people with schizophrenia. They can be consigned to the junk heap of lexicographic history.