Normal People Don't Want to Know Us
First-Hand Experiences and Perspectives on Stigma and Discrimination
stig·ma (stig'mә) [Middle English stigme, brand, from Latin stigma, stigmat-, tattoo indicating slave or criminal status.] n. 1. A mark or token of infamy, disgrace, or reproach. 2. Medicine. A mark or characteristic indicative of a history of a disease or abnormality. 3. Psychology. A mark or spot on the skin that bleeds as a symptom of hysteria. 4. Archaic. A mark burned into the skin of a criminal or slave; a brand. [American Heritage Dictionary, Fourth Edition. Copyright © 2000 Houghton Mifflin Company.]
Clearly, the word stigma has long held meanings deeply associated with hatred and prejudice against those of us who are labeled “mentally ill.” In today’s Western world, as two-hundred-fifty years ago, we are still considered disgraceful, diseased, abnormal, hysterical, even criminal in the minds of a society that, on the whole, seems to have lost much of its understanding and respect for us. [R. Whitaker, Mad in America, Perseus, 2003]
Yet client/survivor voices are seldom heard on the topic of the stigma and discrimination we face; instead, a host of other "experts" who are not directly effected by these phenomena – mental health service providers, family members, concerned citizens' advocacy groups, government policy makers, the media, and the pharmaceutical industry – have all too often spoken on our behalf. Top
dis·crim·i·na·tion (di-skrim'ә-na'shәn) n. 1. The act of discriminating. 2. The ability or power to see or make fine distinctions; discernment. 3. Treatment or consideration based on class or category rather than individual merit; partiality or prejudice: racial discrimination; discrimination against foreigners. [American Heritage.]
While the term discrimination is commonly used to describe official mistreatment of members of certain legally recognized, “protected” classes, it is less often used with regard to the many real and pervasive forms of abuse directed towards people who are labeled or perceived as having a mental disorder (despite the fact that much of that discrimination targets us as members of a legally protected class, people with disabilities). In particular, the term is seldom invoked to describe abuses committed on a societal level, or by community or family members. Undaunted by this legal and linguistic trend, however, many of our focus group participants who reported such incidents saw fit to redefine the term to include acts of disrespect and abuse by family, community and society.
Defining the terms is one of numerous ways in which public awareness of issues surrounding stigma and discrimination against mental health clients has been shaped almost exclusively by non-clients. The voices of clients, survivors, current and former patients themselves have largely been silenced, except when the ideas we express concur with the agendas of the aforementioned groups. Top
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. 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; this input will then be used to develop and disseminate the client anti-discrimination message.
The data was gathered at focus groups held at Interlink Santa Rosa, Palo Alto’s North County Self-Help Center, and the Berkeley Drop-in Center (June 2003); in the community room of a Contra Costa County mental health clinic at the Concord Wellness and Recovery Center (February 2004); at Cordilleras Mental Health Center, Redwood City, in which one group was held inside a locked facility, the Mental Health Rehabilitation Center, and a separate group took place in a board-and-care known as the Suites (both April 2004); at the Circle of Friends Consumer Self-Help Center, Vallejo (April 2004); at the Mental Health Consumer Action Network, Santa Cruz (May 2004); at Spiritmenders Drop-in Center, San Francisco (June 2004); on the Social Death Sentence email discussion list (July 2004), with the San Francisco Dept. of Public Health Youth Task Force, and at Road Dawgz Drop-in Center, San Francisco (both August 2004). Top
The questions we asked at each group were fairly simple:
1. Describe your personal experiences of stigma and discrimination.
(a) Who discriminated against you?
(b) What kind of attitude(s) did the person (or group) who discriminated exhibit?
2. Are you aware of prevailing anti-stigma or anti-discrimination messages? What are the pros and cons of these messages?
3. How do you define stigma and discrimination?
It is important to note that we intentionally did not define the terms stigma and discrimination for participants prior or subsequently to asking about their experiences of them. Our reasoning for this unorthodox approach was threefold. First of all, in the absence of any client consensus on these definitions, to offer any definition would have introduced a bias – either our own or that of the establishment, depending on whose definitions we used – and this bias may well have tainted the focus group results by discouraging or silencing dissenting points of view. Secondly, because the very definition of these terms is in question, part of the purpose of this project was to seek out new
definitions that reflect a more accurate, first-hand experience with the subject; hence Question 3 above. Last but not least, establishing working client definitions of these terms offers clients the potential for greater self-determination and empowerment. In reshaping language used to describe our experiences to others, we as clients have the opportunity to reclaim some of the power that has been taken away from us. Top
As the organized statewide advocacy voice of people with lived experience in the mental health system, the CNMHC is uniquely positioned to facilitate c/s/x focus groups in diverse setting, promote c/s/x definitions, messages and strategies to combat and overcome stigma and discrimination, and provide educational training for mental health professionals and service providers, public mental health departments, policy makers, stakeholder groups, advocates, the media and the general public.
The Network's Bay Area Regional Members have chosen this project as a first step towards bringing c/s/x experiences and perspectives on stigma and discrimination to the center of mainstream discourse. This report on emerging themes from the focus groups will be followed by a position paper in which we will present the clients’ message on stigma and discrimination, redefine the terms to reflect focus group and member input and provide a prescription for systems transformation. Top
In November 2004, California voters approved Proposition 63, the Mental Health Services Act, signaling a new era of possibilities for mental health clients. Crafted in part by clients and survivors, the Act upholds key principles of the c/s/x movement – respect, choice, independence, and self-determination.
The Act creates a significant new source of revenue for public mental health services, via a 1% tax on incomes above $1 million. In keeping with c/s/x principles, the Act mandates that these new funds be used only for new services and supports which transform the system into one that is voluntary, community-based, culturally competent and client-driven.
As planning, review and implementation of the first of these new programs is now underway on both state and local levels, the attention of advocates is once again on stigma and discrimination. The MHSA's Prevention and Early Intervention component, now in the pre-planning stages, specifically calls for new programs to reduce stigma and discrimination.
To guide these new programs through uncharted territory, new research is needed to uncover the truth about the social adversity faced by people labeled “mentally ill”, especially in terms of our experience of the mental health system. This research will help to raise standards for cultural competency, amplify client/survivor voices in planning, review and evaluation of new programs, and provide direction to the transformation of services called for in the Act.
As a result of the research conducted for this report, clients now have a historic opportunity to conduct follow-up studies into the forms and dynamics of stigma and discrimination, and to use the new insights we have gained to train and educate mental health professionals, service providers, mental health departments, boards and commissions, elected officials, law enforcement officers, community and family members, the media and the public. Top
It is my hope and intention that this series of focus groups and the forthcoming report sow the seeds for a new dialogue between clients, survivors, ex- patients, families, advocates, professionals, criminal justice departments, government agencies, landlords, employers, educators, the media, and society as a whole. The focus groups’ primary strength – and our reason for choosing this mode of inquiry – is to reflect patterns of experience and opinion. These emerging patterns can then in turn be used by CNMHC and other client/survivor-run organizations to conduct new research, advocate on public policy issues, get our messages out in the media, and influence the direction of mainstream messages. Once clients’ voices are heard, the oppression that we face can be better understood. Only then can we begin dismantling that oppression from its building blocks to its foundation. And only then can a new chapter in our history be written. Top