Normal People Don't Want to Know Us
First-Hand Experiences and Perspectives on Stigma and Discrimination
For centuries in North America and Europe, people labeled “mad” or “insane” have faced enormous social adversity. This adversity, commonly known as stigma and discrimination, persists to the present day. [R. Whitaker, Mad in America, Perseus, 2003]
Public awareness of issues surrounding stigma and discrimination against mental health clients has been shaped almost exclusively by a number of groups not directly effected by these phenomena: mental health service providers, family members, non-profit advocates, government policy makers, the media, and the pharmaceutical industry. The voices of clients, survivors, current and former patients themselves have largely been silenced, except when the ideas they’ve expressed have concurred with the agendas of the aforementioned groups. As a first step towards addressing this dire situation, our client-run organization launched an innovative qualitative research project in June 2003, with a series of focus groups continuing through August 2004, and culminating in the release of this report.
As the organized statewide advocacy voice of persons with mental health disabilities, the California Network of Mental Health Clients (CNMHC) supports a client-run self-help project in each of five regions. The Bay Area Regional Self-Help Project for fiscal years 2003-04, 2004-05 and 2005-06 has been to conduct a series of client focus groups on stigma and discrimination, compile and study the responses, and report on emerging themes; input from this report will later be used to as a reference to develop and disseminate the client anti-discrimination message in a position paper on stigma and discrimination, with the goal of impacting prevailing discourse. Top
For this project, CNMHC staff and volunteers conducted twelve voluntary, confidential focus groups at different locations throughout the Bay Area. Participants in these focus groups were mental health clients, consumers, survivors, inpatients, outpatients and ex-patients. While most attended the focus groups without pay, young people who participated in the two August focus groups were paid small stipends.
Locations varied; while half (six) of the focus groups were held at client-run self-help centers, the other six took place at an outpatient mental health clinic, a board-and-care, a locked facility, a clients-only email discussion list, a youth task force that advises a county health department, and a drop-in media center for homeless and traveling youth. [Click on the thumbnail image to the left for a larger view of charts showing focus groups by setting and by county.] Each group had between four and 60 participants; the average number was about 21. In an effort to preserve anonymity, no audio or videotape was used; responses were recorded with markers on large pads of paper, except in the case of the email list, in which messages were submitted confidentially via email.
As CNMHC’s Bay Area Regional Coordinator, my job (since December 2003) has been to facilitate focus groups, record, compile and study the responses, and document patterns as they become apparent – looking at primary and secondary themes for each question, overall and by group, and attempting to glean kernels of collective wisdom while providing a fair and accurate representation of the many different experiences and diverse perspectives. Prior to being hired by the Network to coordinate this project, in the summer of 2003, I participated in a focus group at the Berkeley Drop-In Center, which was facilitated by CNMHC Executive Director Sally Zinman and President Nancy Thomas. In this way, some of my own story and opinions are also reflected among the responses. Top
For each of the three questions we asked each group, there was a range of responses, varying from one focus group participant to another and from one setting to another. While some adhered to more conventional views, the vast majority of the responses ventured into new territory, redefining the concepts of stigma and discrimination in fundamental ways, which shed light on social and institutional oppression in a wide array of forms.
1. Describe your personal experiences of stigma and discrimination.
(a) Who discriminated against you?
A major emerging theme in participants’ personal accounts was the prevalence of discrimination from groups whom traditional anti-stigma messages generally neglect to mention – most notably, the mental health system and family members, followed by the criminal justice system and the medical establishment. Also prominent in the list of discriminating entities were some of the more commonly acknowledged sources of stigma, chief among them community members and society as a whole, along with employment and education. [Click on the thumbnail image to the right for a larger view.]
Within the mental health system, professionals and service providers received the bulk of complaints, with psychiatrists cited most often among them by a wide margin. [Click on the thumbnail image to the left for a larger view.] Specific community members were most often reported as having discriminated in community/society responses, particularly friends, other clients, classmates and neighbors. Participants’ accounts of discrimination by their families were split fairly evenly between specific family members and family as a whole; among specific family members, parents figured most prominently. Of responses in the criminal justice system category, police led the pack, reported as having discriminated in the vast majority of responses; of those, specific police officers were cited in the majority of accounts. Top
(b) What kind of attitude(s) did the person (or group) who discriminated exhibit?
Attitudes exhibited by discriminators, ranging from indifference and disinterest to disgust and revulsion, from doubt and distrust to hostility and derision, appear to have been rooted in fear, hatred and pity. Discriminatory actions reported, involving varying degrees of social control, shunning and negligence, further point toward fear and hate as primary motivators.
The most frequently cited negative attitudes in the mental health system were disregard for client’s goals and/or choices, arrogance/disdain, paternalism, judgment and disregard for client’s civil and/or human rights. Of discriminatory actions reported, using the service provider/client relationship as a means of imposing social control was voiced in an overwhelming majority of responses in this category, followed by abuse of authority/power and promoting/contributing to harmful myths and stereotypes about clients, and trailed by labeling, reinforcing social isolation and discouraging independence/encouraging dependency on provider/drugs/system, revealing a marked pattern of extremely controlling behaviors among mental health service providers who discriminated and in the mental health system as a whole. [Click on the thumbnail image above for a larger view.]
In the community/society category, intolerance, arrogance/disdain, judgment and disrespect prevailed among attitudes, while de facto segregation/ostracism, dismissal/invalidation and verbal harassment/taunting/name-calling/ridicule took the lead among actions, pointing towards a predominance of shunning along with a streak of controlling/bullying. [Click on the thumbnail image to the left for a larger view.] Top
Intolerance and judgment stood out among attitudes cited in accounts of discrimination from family members, followed by hostility, paternalism and doubt/expectation of incompetence. Nearly half of the hurtful actions attributed to family members involved verbal/emotional abuse; this was followed at a distance by limiting/interfering with life choices/goals, along with using disability status/vulnerability as a means of control, scapegoating, willful ignorance, and rejection/cutting off communication/withdrawal of support/disowning, indicating a strong theme of controlling and a degree of shunning among the families of many participants.
More than two-thirds of discrimination complaints involving the criminal justice system cited civil and/or human rights violations, which far-and-away topped the list of actions; accordingly, disregard for civil and/or human rights was named most among attitudes, followed by judgment, expectation of violence/criminality, distrust, indifference and hostility; other frequently reported actions were false arrest/wrongful incarceration, harassment/public humiliation, discounting/refusal to listen and/or believe, and groundless 5150/ unwarranted forced hospitalization. [Click on the thumbnail image above for a larger view.] The seriousness of these charges, combined with the sheer volume of participant reports of discrimination, distinguish the criminal justice system, and police officers in particular, as the group with the most egregious reputation for controlling attitudes and actions, while retaining a knack for recklessness/negligence and shunning. Top.
2. Are you aware of prevailing anti-stigma or anti-discrimination messages? What are the pros and cons of these messages?
The most often cited messages overall were the statement that stigma is primarily problematic insofar as it discourages people from seeking treatment (based on a statement from the 2003 Final Report of the President's New Freedom Commission on Mental Health) and that mental illness is caused by a chemical imbalance, it’s nobody’s fault, and recovery is possible with proper treatment and medication, along with its “medical model” cousin, that mental illness is like cancer, diabetes or heart disease, and recovery is possible with appropriate services and medications (both based on messages from NMHA, NAMI and various drug companies). [Click on the thumbnail image above for a larger view.] Participants were often stumped when asked to define prevailing anti-stigma messages; most often when they cited messages, they were either talking points used by client/survivor organizations, such as 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 “no-fault broken brain” message, 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), or else they cited overtly stigmatizing messages they had seen or heard in the media, including the myths that mental health clients are incompetent, stupid, and unable to make decisions and that segregation of “the mentally ill” is in all of our best interest.
Without a doubt, the most hotly debated messages were three variants of the “medical model” argument favored by NMHA, NAMI and a number of pharmaceutical companies. 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 its loyal supporters – who agreed, for example, with the claim that mental illness is a biologically based disease like diabetes or cancer, and that therefore 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. [Click on the above right thumbnail image for a larger view.] Even more dramatically, with the exception of one, participants roundly rejected the much trumpeted NFC 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. [Click on the lower right thumbnail image for a larger view.] Top
3. How do you define stigma and discrimination?
Finally, in defining the terms stigma and discrimination, participants most often drew from their personal experiences, equating stigma with prejudice, judgment and labeling, reactions of fear, disgust and intolerance, forced treatment and involuntary hospitalization [click on the thumbnail image to the left for a larger view], and defining discrimination as judgmental attitudes and abusive or violent actions towards people perceived as not being “normal”, the reinforcement of social isolation and alienation, de facto segregation/exclusion and objectification under the hypercritical lens of the “medical model”, indicating attitudes of disrespect, hostility, neglect or disdain [click on the thumbnail image below for a larger view]. These definitions differ sharply from prevailing discourse, which posits that stigma simply involves negative beliefs about mental illness fostering shame and denial of one’s mental health “problem” and, consequently, avoidance of treatment, and that discrimination exists solely in a legal context, in the relatively small number of court rulings in favor of a person with a psychiatric disability who proves that he or she has been treated in an inferior manner. Top
Notably, participants consistently embraced broader, more positive and inclusive messages to combat stigma and discrimination. The following are a few selected quotes: “Providers should pay us to train them on effective skills and best practices,” said one 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,” opined another at Interlink in Santa Rosa. “Rather than measure individual “outcomes”, why don’t we measure consumers’ empowerment as a whole?” asked a Circle of Friends Self-Help Center participant. “We are the first ones to realize when we’re not feeling well. We don’t lack insight,” noted a Berkeley Drop-In Center participant. “People instinctively seek help if they think they can get it,” observed another. “5150’s [involuntary 72-hour holds in locked psychiatric emergency units] should be abolished,” argued a participant in the Cordilleras locked facility. “As with Handel, mental health issues can be a gift as well as a curse,” commented a participant at the Concord Wellness and Recovery Center. Top
For more information, please read the full report.