Call Me By My Name

Call me by my name; See me for who I am

by Keith Wood, PhD ABPP
Atlanta Behavioral Health Advocates

 “What you call me matters.”  This is generally true but especially so when it involves individuals diagnosed with schizophrenia.  This diagnosis itself seems to uniquely take a negative identity of its’ own, resulting in its’ recipients being the object of negative discrimination in social, occupational, housing, opportunistic, treatment and behavioral arenas.  Too often the diagnosis is associated with being disabled, dangerous, and destitute.  Frequently the term “schizophrenia” is synonymously linked to equally derogatory labels including being “crazy”, “mental”, “a looney tune”, “out to lunch”, “totally nuts or bananas”, “having an elevator that doesn’t go to the top”, “stupid or retarded”, “a lunatic”, “a raging maniac”, “having two sheets to the wind”, “out of their mind”, “loco”, “coo-coo”, …  Schizophrenia is considered the most serious of the continuum of behavioral disorders and the condition is almost uniquely associated with being truly “mentally ill”, i.e., a person consumed by and lost to the illness; “a schizophrenic”.   The term is commonly used as an identifier (a noun, “the schizophrenic”).  Other behavioral disorders like depression, anxiety, posttraumatic stress and bipolar conditions usually don’t measure up to the truly “mentally ill” standard.  They are considered descriptive add-ons to the person, i.e., a person with a condition.  These other diagnoses are considered adjectives describing a person - “she has depression” or “he has PTSD” or “she’s bipolar” (extremely moody) or “he’s anxious” (overly stressed and worried, hypersensitive).  Receiving the schizophrenia mental illness label usually is a prescription to never living a disease free, normal, functionally adaptive life (most estimate recovery rates of less than 5%). 

The stigmatization associated with the schizophrenia label may contribute to the actual development and maintenance of the disturbing behaviors, feelings and thoughts associated with the diagnosis.  Individuals diagnosed with schizophrenia are likely unemployed, residing in inadequate temporary settings/environments, living in poverty, separated from and lacking family support, victimized by others and systems, involuntarily restrained and intervened upon, recipients of little and poor medical health care, and objects of negative discriminatory attitudes and actions.  Historically it was believed such situational conditions and factors were consequences of having the schizophrenia, part of the downward progression of the illness over time.  More recently we have come to recognize these very factors/conditions (unemployment, homelessness, poverty, estrangement and isolation, victimization (including abuse and trauma), incarceration and restraint, inadequate health care, and being subjected to consistent negative discrimination) are associated with the onset of schizophrenia and the subsequent continuation and functional deterioration of the disorder.  If the social and community stigma from being “a schizophrenic” results in a general reduction in constructive opportunities, resources, respect, and positive expectations, the schizophrenia label actually may contribute to the full expression and maintenance of the disorder itself.

Individuals negatively labeled as being different or outside the societal norm, for whatever reason (skin color, living conditions, heritage, status (immigrant), cultural practices, …), are more likely to display behaviors, perceptions and attitudes suggestive of a schizophrenia diagnosis.  Such behaviors, perceptions and attitudes may more accurately reflect a person’s effort to manage aversive and stressful discriminatory interpersonal, social, situational and environmental conditions than symptoms of an illness.  Efforts to cope with traumatic and abusive experiences could reasonably involve developing alternative realities in one’s mind that includes conversing with imaginary people.  Adjustments to blatant aversive discrimination and dangerous situations and settings could likely result in developing overwhelming fears, suspicions and distrust of others and organizations.  Trying to make sense with confusing and conflicting messaging may involve developing alternative (“different”) thinking and interpretations about the way things operate and function.  Reactions to overwhelming injustices that appear unsolvable could be the prelude to becoming aggressively angry or passively depressed.  Individuals in environments where they are negatively labeled, unfairly treated or victimized, functioning within limiting, varying and confusing rules and systemic practices, and ostracized (not included and not allowed to join or assimilate) have the highest rates of diagnosed schizophrenia.  Those perceived to be deviants from the social norm, including those who are culturally, racially, economically, and behaviorally different, are more likely to receive and be identified with this life-long diagnosis. 

The diagnosis of schizophrenia seems to take over the identity of the person.  Our challenge in interacting and working with individuals is to see the person, and not the differences or diagnoses, first.  This involves being willing to see what is most obvious, i.e., an individual who, other than having a few variances, remarkably resembles ourselves.  See the person as a person, not as their unique and distancing descriptive label.  Talk to, think about, refer to the person.  The individual is not “the schizophrenic”, “the mental patient”, the disease or problem, they are first and foremost a person.  The person may be diagnosed with schizophrenia, may be being managed or treated for a behavioral disorder, or have some disease or problem, but the condition is not the person.  Starting with seeing the person involves seeing commonalities and similarities (a fellow member of the personhood club).  This inclusive practice counters the detrimental exclusionary and misunderstanding aspects of stigmatic labeling.  It’s no longer “they” or “them”, it becomes “we” and “us”.  It’s not “Schizophrenics (they) are out of their minds and dangerous” but “Under certain circumstances we can sound like we aren’t thinking ‘straight’ and do some things we may later regret”.  The person isn’t abnormal even if some of his or her thinking and behavior is bizarre; she or he is a person (an individual) with bizarrely deviant behavior!  When we see the person is a person like you and me, we are more likely to look for, find and identify circumstances that contributed to the odd and unusual thinking and behavior.  Seeing the person first leads to a greater connection with and understanding of the person’s different experiences. 

The respect and empowerment that comes with calling a person by their name and seeing her or him as a fellow human are core intervention elements in the successful schizophrenia recovery and remission process.  It shifts the power differential from the traditional hierarchal “doctor-patient” relationship to a more egalitarian “person to person” one.  Individuals are no longer considered to have “mental illnesses” that are cured through treatment (even in traditional nomenclature the term is “medication management”) but behavioral disorders that are collaboratively modified to become more helpful and adaptively appropriate.  Thus individuals no longer need to be called or referred to as “patients”, “schizophrenics” or other assigned descriptors, but persons with names (even the use of names and titles need to communicate respect and empowerment with a sensitivity to the person’s age and culture; e.g., no longer Dr. Smith and Sadie.).  The most significant intervention advances with individuals diagnosed with schizophrenia over the past forty (40) years have centered around the respect and empowerment associated with what a person is called and how they are seen.  A good place to start is calling people by their names and seeing (and working with) them as the fellow persons they are.