Real shame
Sylvia Caras, Ph D

Abstract:

People with psychiatric disabilities are shunned. Ensconced in a separate array of interventions that are isolating and insulating, people with psychiatric disabilities are also discredited with a mental-health specific language. This essay asks the mental health leadership to help align psychiatric disability with other disabilities. The author suggests relational advocacy, advocacy that does not disparage people who experience mood swings, fear, voices and visions.

Real shame

The stolid Old Executive Office Building squats at the corner of Pennsylvania Ave next to the White House in Washington, DC. I stopped across the street to absorb the sense of fortress. I was here to meet Jonathan Young (1) to thank him for his leadership, to ask that the January report of the National Council on Disabilities (2) be more widely referenced, and to ask that the White House disability policy more fully embrace people who directly experience mood swing, fear, voices and visions.

Security officers at the entrance desk handed me a visitors badge on a chain to wear around my neck. The badge showed only a large A, for Appointment, red on a white background. Though it was not splendid, and was a bit too blue for the color to be called scarlet, I thought of Hawthorne and Hester Prynne as I raised my arms to put on my letter.

It seemed apt to be wearing my mark of stigma, my scarlet letter, for my meeting with a White House disabilities policy person. I associate stigma with the exposure of sin. The result of sin is one of the ways some understand disability - other models are medical and social. I came to encourage use of the universally understood language of prejudice and discrimination instead of creating a new and isolating stigma language and stigma concept. (3) I wanted the mental health leadership to help
align psychiatric disability with other disabilities.

I had spent a week at the National Statistics Conference and would then spend a week at the National Mental Health Association Conference and the National Consumer/Survivor Summit. At the meetings, I heard about stigma often -- stigma research, anti-stigma campaigns and stigma-fighting awards -- and each time I reacted a bit more quickly and a bit more negatively.

When I came home, still bothered, I tried to find out when stigma came to be paired so seamlessly with mental illness and when the mantra "the stigma of mental illness" began to be our chant. My friend Andrew (4) gently reminded me of Goffman, and I thought back for context. In 1963, Goffman followed Asylum (1961) with Stigma, Betty Friedan's The Feminine Mystique was published, Richard Alpert (who became Ram Dass) was fired from Harvard with Timothy Leary for experimenting with LSD, Martin Luther King was in a civil rights march on Washington, President Kennedy said "We are confronted primarily with a moral issue. ....  The heart of the question is whether all Americans are afforded equal rights and equal opportunities.... " (5) and Congress debated the Community Mental Health Centers Construction Act.

Had those social changes, even community care, changed the general views of madness?

Pilot V Ball pen and yellow pad in hand, I spent an hour browsing through the Electronic Resources Information Center and other electronic databases at the University of California Santa Cruz's McHenry library. Mary (6) used Ovid software to search several databases and also accessed the National Library of Medicine. Apparently in sociology and social psychology the term "stigma" is used regularly in writing about marginalized groups. I found occasional periodical citations in the 1960's and 1970's to stigma and mental illness (7), and by the mid 1980's and early 1990's references began to appear in the general media, citations
to articles with familiar authors -- Michael Winerip, Mike Faenza, Otto Wahl, Kay Jamison. In 1990, Nora Weinerth and Jean Arnold broadened their New York activities and founded the National Stigma Clearinghouse.

But I still wasn't clear why this phrase that we use - the stigma of mental illness - was so prevalent.

I reread Hawthorne: "The scarlet letter ceased to be a stigma which attracted the world's scorn and bitterness, and became a type of something to be sorrowed over, and looked upon with awe, yet with reverence too." (8) Boyles explained some of my puzzlement about why consumer supporters would want to revere the negative and consumers would not object. "Members of the oppressed group are caught between the need to define the group in order to trigger the protection of civil rights and to deconstruct the group in order to deny that it completely defines them." (9) One can surround stigma with awe and reverence then as a reframing of self-definition.

Goffman says more, in his beginning: "The Greeks, who were apparently strong on visual aids, originated the term stigma to refer to bodily signs designed to expose something unusual and bad about the moral status of the signifier. The signs were cut or burnt into the body and advertised that the bearer was a slave, a criminal, or a traitor - a blemished person, ritually polluted, to be avoided, especially in public places. Later, in Christian times, two layers of metaphor were added to the term: the first referred to bodily signs of holy grace that took the form of eruptive blossoms on the skin; the second, a medical allusion to this religious allusion, referred to bodily signs of physical disorder. ...The term stigma ... will be used to refer to an attribute that is deeply discrediting." (10)

Mental health professionals have shared in this discrediting and positioning -- concealed treatment (separate entrance and exit doors), unique hospital confidentiality laws (no admissions records disclosed) and unique hospital units (psychiatric wards with minimal real medical staffing), parity financing (which does not question insurance reimbursement for compelled interventions). Specifically, as an example, in the government blue pages of the Santa Cruz County Pacific Bell telephone book, there is no mental health listing under health, not even a cross reference. Mental health has a separate major heading. Separatist health care, separatist laws, and separatist language isolate people with psychiatric disabilities.

By setting separate standards, the implementation of these real professional practices contradict the regularly repeated claim that psychiatric illnesses are real and medical and are thus to be treated like other real medical conditions. Yet at the same time, by definition, hospitalization characterizes the problem as medical illness and leads to medication treatment compliance and denies the social context so an illness metaphor is reinforced and becomes accepted. Admission turns one from person to patient. Believing that "stigma" is a primary barrier to care allows us to not evaluate the care itself and the reasons people might have for choosing to avoid it, choosing the streets over the meds, choosing jails over the wards. It is time to recharacterize differences in information processing and understand that not every mind is alike. "Prejudice ... in any society hinges on the refusal to recognize members of a group ... as being fully human." (11) People with psychiatric disabilities have been shunned, ensconced in a separate array of interventions and isolating, insulating, discrediting linguistic descriptors.

An AltaVista Internet search (12) reported 98,000 hits for "stigma of mental illness" and 160,000 hits for "mental illness" - for every eight times the phrase "mental illness" is written, five times the word "stigma" is also included. I can't be at all definitive about the origins; yet the phrase is pervasive, pervasive enough to convince the reader that there is stigma. I am confused at the investment. Perhaps it is a screen to avoid feeling real shame. By the regular recitation, it does convince that there is reason for the linkage, grounds for shunning. We keep explaining that mental illness is deeply discrediting. We keep re-stereotyping.

Inclusion is a necessary step towards reevaluating preconceptions and dispelling myths. The current supporter campaigns are reinforcing more sterotypes about us, without us. Mental health consumer supporters keep emphasizing separation and exclusion and sending this wrong message. If we change our own actions, we can expect attitude changes to follow. Work towards inclusion can start by using the language of other marginalized groups, the language of the cross-disability movement, of civil and human rights, and advocating against discrimination and prejudice. Steps towards inclusion are "equal status, cooperative interaction, and institutional support." (13)

I'd like my psychiatric health needs to be part of all my health needs, my psychiatric services to be delivered in natural health settings, and the language about psychiatric disability to be the language of all health and disability. When I am isolated and ignored because of my psychiatry disability, when I am distinguished unjustly and my rights disregarded, that is prejudice; that is discrimination. Calling it by a word only used for mental illness allows people to separate the wrong from other social injustices. Calling it by a word only used for mental illness disallows us the political and social change leverage of language everyone understands.  Paraphrasing Weick, words express and interpret; words include and exclude; words matter. (14) To remove real shame it must be named correctly. We must expose shunning and shaming as the prejudice and discrimination that it is.

Miller has described relational psychology, (15) Gergen writes about relational politics, (16) I suggest relational advocacy, advocacy that does not disparage people who experience mood swings, fear, voices and visions. In relational advocacy there is no place for special, reserved, language that perpetuates the very discrimination it attempts to describe. Relational advocacy and responsibility would have a straightforward goal: to have "cooperative and open attitudes ... become the moral standards" (17) and, using Gergen's phrase, that we would live and work together.

Sylvia Caras, July, 2000

1. Appointed by President Clinton as Associate Director of Public Liaison to do Disabilities Outreach.

2. From Privileges to Rights: People Labeled with Psychiatric Disabilities Speak for Themselves http://www.ncd.gov/newsroom/publications/privileges.html

3. I first heard this discussed in the early 90's by Darby Penney, New York State Director of Recipient Affairs.

4. Andrew Phelps, Ph D, developer of the Accountability Caucus and California client leader.

5. June 11 1963 speech quoted at http://americanhistory.about.com/homework/americanhistory/library/weekly/aa082597.htm?once=true&

6. Mary Montgomery, RN,MN,PMHNP, psychiatric mental health nurse practitioner.

7. The earliest exact reference we found was: Sister Loretta Maria, "Stigma of mental illness can be erased," Mental Hygiene, Arlington, VA: National Association for Mental Health, January, 1965, pp 46 - 51.

8. Nathaniel Hawthorne, The Scarlet Letter: A Romance, New York: Knopf, 1992, p 272. (Originally published in 1850).

9. James Boyles, Universalism, Justice and Identity Politics: From Political Correctness to Constitutional Law, 2000.
http://www.wcl.american.edu/pub/faculty/boyle/identity.htm

10. Erving Goffman, Stigma: Notes on the management of spoiled identity, Prentice-Hall: Englewood Cliffs, NJ, 1963, p 1; 3.

11. T M Luhrmann, Of two minds: the growing disorder in American psychiatry, 2000. New York: Knopf, p 281.

12. www.altavista.com, June 29, 2000.

13. Corringan, P W and Penn D L, "Lessons from social psychology on discredting psychiatric stigma," American Psychologist, 54(9):765-76, 1999 September.

14. Karl E Weick, Sensemaking in Organizations, Sage, 1995, p 132.

15. Jean Baker Miller, Toward a new psychology of women, 1977. Boston : Beacon Press.

16. Kenneth Gergen, Social Construction and the Transformation of Identity Politics, 1995. http://www.swarthmore.edu/SocSci/kgergen1/text8.html

17. Pierre Lvy, "Meta Evolution," 2000. http://otal.umd.edu/~rccs/books/levy/metaevolve.html

 
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