On This Page:  The Real Experts | Top Four Discriminators | First-Hand Experiences | Prevailing Messages | Pros and Cons | Rethinking Stigma | Ending Discrimination 

Yet public awareness of stigma and discrimination has been shaped almost exclusively by groups who are not directly affected – mental health professionals, citizens’ and family members' advocacy groups, government policy makers, the pharmaceutical industry and the media.  

In the prevailing discourse on stigma put forth by these groups, a number of key questions have gone unanswered:  

• Which groups discriminate against us the most?  

• Who decides who is "normal" and who is "diseased"?  

• What types of attitudes and behaviors pave the road to further fear, hostility and mistreatment? 
  

• What should be done to transform our cultural environment from one of abuses and indignities to one of respect, empowerment and self-determination?  

• And how do clients and survivors themselves define stigma and discrimination?  

These are among the questions to which the California Network of Mental Health Clients set out to find answers.   

Discrimination:  Who tops the list?

Responses from participants in a series of focus groups we conducted shed new light on social and institutional oppression in a wide array of forms, and challenge mainstream depictions of who most often discriminates against mental health clients.

In a stunning reversal of conventional discourse, the majority of responses expose the roles of the mental health system, family members and the criminal justice system in reinforcing stigma and perpetrating discrimination, rather than offering protection or relief from it.  Together with community members and the public, these groups were named in nearly three-quarters of all reports of discrimination.

Read more from the Executive Summary of "Normal People Don't Want to Know Us"   [Top]

Looking oppression in the eye:  Focus group participants recount experiences of discrimination.

“My psychiatrist tried to force me to take meds, and eventually I ended up having to take them against my will.  They made me take the meds for a year.”
- A young African American woman in her teens, San Francisco Dept. of  Public Health Youth Task Force

“Mental health service providers don’t listen or take me seriously.  Even though I speak truth, I am discounted as 'crazy’ because I don’t make eye contact, appear normal.”  
- A participant at Spiritmenders Drop-In Center, San Francisco

“My family had me involuntarily committed.  They called the police, watched them put me in handcuffs and treat me like a criminal – even when I was seeking treatment.” 
- A participant at North County Self-Help Center, Palo Alto

“I had just been harassed and then brutalized by police, and
was crying in pain. When the EMTs saw my history of 5150’s,
they assumed I was acting ‘crazy’ and took me in to the
psychiatric ward.” 
- An African American man in his 40’s at the Berkeley Drop-In Center 

“Locked units like this don’t let us have any books on our legal rights or empowerment; we can’t access resources like computers or the Internet either.”
- An African American man in the Cordilleras MHRC locked facility, Redwood City 

“As a client provider working in the county mental health department, when a supervisor doesn’t like my work, they arrange to change my meds - and they want to make that a policy.” 
- A participant at North County Self-Help Center, Palo Alto 

“People on the street ask me rude questions. ‘Don’t you know how to stop shaking?  What’s your problem?  Are you from a mental institution?’  They give me funny looks.”    
- A white woman in her 60's at the Suites Board and Care Facility, Redwood City 

Read more from the forthcoming CNMHC report "Normal People Don't Want to Know Us"   [Top]

Anti-stigma campaigns:  Which messages are being heard, and from whom?

Drawing from anti-stigma messages with which they were familiar, participants in our study most often cited the statements that people with psychiatric diagnoses are no more prone to violence than others (culled from the 1999 MacArthur Risk Assessment Study) and that recovery is possible (NMHA, many consumer organizations and mental health professionals), the highly publicized message that mental illness is caused by a chemical imbalance, it’s nobody’s fault, and recovery is possible with proper treatment and medication (based on messages from NMHA, NAMI and various drug companies), and the observation that the media perpetuate stigma and discrimination but offer no high-profile media message against it (based on the work of Otto Wahl and others).  

Also frequently cited were a number of overtly stigmatizing messages participants had seen or heard in the media, including the myths that mental patients are incompetent, stupid, and unable to make decisions and that segregation of “the mentally ill” is in all of our best interest.  

The NMHA and the media tied as the top sources of prevailing messages cited.  NMHA material was cited the most overall, whereas media messages were named the most by focus group participants.  

Read more from the forthcoming CNMHC report "Normal People Don't Want to Know Us"  [Top]

 

Prevailing anti-stigma messages:  How do they measure up?

Without a doubt, the most hotly debated messages in our focus groups were three variants of the “medical model” argument, favored by NMHA, NAMI and a number of pharmaceutical companies, that mental illness is caused by a chemical imbalance, it’s nobody’s fault, and recovery is possible with proper treatment and medication. 

Responses on both sides focused primarily on the ethics and efficacy of a model centered on prescription drugs and patient compliance with drug regimens.  The “medical model” had some loyal supporters among the participants – who agreed, for example, with the claim that mental illness is a biologically based disease like diabetes or cancer, so early intervention and treatment with appropriate medications are key to recovery – but the vast majority regarded claims of a “biochemical imbalance” with great suspicion, challenging and debunking such statements as unproven, stigmatizing and potentially harmful in terms of their influence on clients’ health, safety and informed consent.

Even more dramatically, with the exception of one, participants roundly rejected the President's New Freedom Commission on Mental Health's much trumpeted claim that stigma is problematic mainly insofar as it discourages people from seeking treatment.  That message was frequently criticized for ignoring the sources and impact of stigma and discrimination on clients’ everyday lives.

Read more from the forthcoming CNMHC report "Normal People Don't Want to Know Us"  [Top]

Rethinking stigma

When we asked participants to define the terms stigma and discrimination, most drew from their personal experiences:

stig·ma (stig'mә) [redefined by focus group participants]  n.  1. Prejudice or judgment against people labeled mentally ill [16% of responses].  2. A mark, brand or label used to segregate people viewed as "defective" [12%].  3. Fear or revulsion towards people who are not "normal" or "perfect" [12%].  4.  The intolerance or lack of acceptance most people have towards mental illness or madness [8%].  5. Forced "treatment", forced drugging, or loss of personal freedom [6%].

dis·crim·i·na·tion  (di-skrim'ә-na'shәn) [redefined by participants]  n.  1. Prejudice [12%].  2. Acts of verbal abuse, disrespect or violence towards a person based on the perception that they are not "normal" [7%].  3. Attitudes and actions that reinforce social isolation or alienation of people labeled mentally ill [5%].  4. De facto exclusion of people labeled mentally ill from employment, financial resources or community events [5%].  5. The focus on a person's defects inherent in the "medical model", whose labels, such as "mentally ill", connote the expectation of failure or unpredictability [5%].  6. Stereotyping [5%].

These definitions, indicating attitudes of disrespect, hostility, neglect or disdain, differ sharply from prevailing discourse, which posits that stigma involves shame and denial of one’s mental health “problem” and, consequently, avoidance of treatment, and that discrimination exists solely in a legal context, when a person with a psychiatric disability is able to prove that he or she has been treated in an inferior manner. 

Read more from the forthcoming CNMHC report "Normal People Don't Want to Know Us"  [Top]

Ending Discrimination

Focus group participants consistently embraced broader, more inclusive messages to combat stigma and discrimination.  The following are a few selected quotes:  

“Like the calm in the eye of a storm, people may not be aware of discrimination when they are perpetrating it.” 
- A participant at the Circle of Friends Self-Help Center, Vallejo

“People 'other' us.  It's social control based on fear.  They see a line with us on the other side.” 
- A participant at the Berkeley Drop-In Center

“It's painful and confusing to be treated differently.  The way I'm treated seems to tell me my differentness is unique.”
- A participant at the Berkeley Drop-In Center

“Discrimination hinders recovery.  We must constantly fight for our rights.”
- A participant at Interlink Self-Help Center, Santa Rosa

“Providers should pay us to train them on effective skills and best practices.” 
- A participant at the Berkeley Drop-In Center

“We should be given the same opportunities as anyone else for employment, health insurance, and respect from medical staff, especially in the mental health system. We get lip service and tokenism, but not actual respect and power.” 
- A participant at Interlink, Santa Rosa

“Rather than measure individual 'outcomes', why don’t we measure consumers’ empowerment as a whole?” 
-A participant at Circle of Friends, Vallejo

“We are the first ones to realize when we’re not feeling well.  We don’t lack insight.” 
- A participant at the Berkeley Drop-In Center  

“People instinctively seek help if they think they can get it.” 
 - A participant at the Berkeley Drop-In Center

“5150’s [involuntary 72-hour holds in locked psychiatric emergency units] should be abolished.” 
- A participant in the Cordilleras locked facility

“As with Handel, mental health issues can be a gift as well as a curse.”  
 - A participant at the Concord Wellness and Recovery Center.  

“Being stigmatized and discriminated against is a fantastic tool for personal growth.”   
- A participant at RoadDawgz youth drop-in media center, San Francisco

Read more from the forthcoming CNMHC report "Normal People Don't Want to Know Us"  [Top]