NAMI fighting to stop stigma of mental illness

In this issue...
What’s In a Name? A Letter from the ADS Center
Online Resources
Research
Models, Programs, and Technical Assistance Tools… NAMI’S In Our Own Voice
In My Experience…Learning From a Troubled Genius by: Miriam Davis
What’s In a Name?
Nearly two months ago, we announced a change to the ADS Center’s name, from SAMHSA's Resource Center to Address Discrimination and Stigma to SAMHSA's Resource Center to Promote Acceptance, Dignity and, Social Inclusion Associated with Mental Health. The change demonstrates a new perspective for The ADS Center. We’re focusing on recovery, wellness, and the power of individuals with mental illnesses to chart their own recovery courses, based on their strengths and goals. These elements have always been part of our work, but now they’re at the forefront.

Many of you have shared your comments and feedback about the new change, and we thank you for taking the time to write. While we had a few emails questioning the new name, the majority expressed view like these:

Fabulous! Language structures experience and intention. I love your name change and applaud the awareness and consciousness out of which it grew.
I really like the positive and “do it” attitude that the new name presents!!!!!
The new name reflects a shift in society's view of mental illness from exclusion to inclusion.
The name change is powerful. Thank you very much for your foresight and thoughtfulness in doing this. It will make a difference.
I like the way the new name stresses the positive strengths and attributes as opposed to a negative focus.

We also received emails that challenged us to go further with the name change, like this one: The name change is great. But I note that the website still is called Stopstigma and also this email. It seems a little redundant.

We agree. From now on, we have a new Web site:

http://promoteacceptance.samhsa.gov/ and a

new email address: mailto:promoteacceptance@samhsa.hhs.gov

Please bookmark the site and use that new email address to stay in touch. Thank you for helping us Promote Acceptance, Dignity and, Social Inclusion Associated with Mental Health.
Sincerely, The ADS Center
Online Resources
Guidance of Transformational Language

Transformation in services and supports for adults, and children and youth with mental health problems, requires a complementary transformation in the language we use to describe the people we serve. The Substance Abuse and Mental Health Services Administration developed this guide to provide examples of transformational, people-first language.

Guidelines for non-handicapping language in APA journals:

Committee on disabilities issues in psychology This fact sheet provides guidelines for the use of appropriate language regarding people with disabilities.

Mind your language: Media guidelines for mental health issues

This booklet, part of the 'see me' mental health public education campaign of Scotland, provides guidelines when addressing mental illness in the media.

Module Two: Defining the Illnesses

This is a teaching module on the proper uses of psychiatric terminology. Learners understand how inaccurate portrayals and stereotypes of mental illnesses create barriers to medical treatment. This brochure is also available in its entirety from the American Psychiatric Publishing, Inc.

Stigma and discrimination: Aspects of stigma

Prejduice and discrimination towards people with schizophrenia and other mental illnesses, and even towards their families, is a huge problem. This Web site contains ideas put together from conferences and other academic discussions about language.

Stigma and Mental Illness

This fact sheet about labels and stereotyping demonstrates the ways in which words can hurt and the ways in which they can affirm people with mental illnesses. By juxtaposing the ways that 'words can be poison' and the ways that 'words can heal,' the document sets ups do's and don't for the appropriate use of language.

Stigma: Language matters

A fact sheet created by On Our Own of Maryland outlining appropriate and nonstigmatizing language to use when speaking about people who have mental illnesses. The fact sheet is available at onourownmd.org

Words matter

This fact sheet provides examples of appropriate and inappropriate language when discussing mental illness.

Research
Corrigan, P. Language and Stigma. Psychiatric Services. August 2006; 57:1218.
Covell, N.H., McCorkle, B.H., Weissman, E.M., Summerfelt, T. and S.M. Essock. What's in a Name? Terms preferred by service recipients. Administration and Policy in Mental Health. September 2007; 34(5):443-7. Epub 2007 Apr 27.
Folsom et al. A Longitudinal Study of the Use of Mental Health Services by Persons With Serious Mental Illness: Do Spanish-Speaking Latinos Differ From English-Speaking Latinos and Caucasians? The American Journal of Psychiatry. 2007; 164: 1173-1180
Hamilton, B. and E. Manias. 'She's manipulative and he's right off': A critical analysis of psychiatric nurses' oral and written language in the acute inpatient setting. International Journal of Mental Health Nursing. June 2006; 15(2):84-92.
Levav, I., Shemesh, A.A., Kohn, R., Baidani-Auerbach, A., Boni, O., Borenstein, Y., Dudai, R., Lachman, M., and A. Grinshpoon. What is in a name? Professionals and service users' opinions of the Hebrew terms used to name psychiatric disorders and disability. The Israel Journal of Psychiatry and Related Sciences. 2005; 42(4):242-7.
Rose, D., Thornicroft, G. Pinfold, V., and A. Kassam. 250 labels used to stigmatise people with mental illness. BMC Health Services Research. 2007; 7: 97.
Sharma, V., Whitney, D., Kazarian, S.S., and R. Manchanda. Preferred terms for users of mental health services among service providers and recipients. Psychiatric Services. February 2000; 51(2):203-9.
Simmoons, T., Novins, D.K., and J. Allen. Words have power: (Re)-defining serious emotional disturbance for American Indian and Alaska Native children and their families. American Indian and Alaska Native Mental Health Research, The Journal of the National Center. 2004 11(2): 59-64.
Models, Programs, and Technical Assistance Tools
Listening Well for Mental Health

Paula Comunelli a 2008 SAMHSA Voice Award Winner for Consumer Leadership is the founder and CEO of Listening Well, an organization that provides personal and professional development for individuals, organizations, and communities using the power of storytelling. Her diverse background includes social change advocate, entrepreneur, corporate manager, government contractor, and transformational leader. A mental health consumer in recovery, Paula works to remove prejudice and discrimination that comes from ignorance and brings different cultures and ethnicities regardless of age and gender together.

Listening Well uses a recovery philosophy to both empower consumers of mental health services, family members, and service providers, and reduce negative public perceptions of people with mental disorders through unique community storytelling retreats and mental health monologue events.

Listening Well’s goals include:
Facilitating consumers of mental health services to step further into their personal power and potential by taking them on a retreat to go through a process of helping them uncover and prepare to present the essence of their story of recovery and
Promoting transformation in members of the public or mental health system who witness these stories (at a monologue event) by impacting perceptions about the recovery capacity of people regardless of where they lie on the continuum of mental health and by reducing negative attitudes surrounding mental health issues.

Listening Well accomplishes its goals through programs that include:
The Listening Well Experience (LWE)This personal exploration is designed to deepen self-knowledge, enhance leadership capacity, and further the human experience. This workshop is for those committed to their inner and outer journey and who seek balance and wholeness in their lives. Because storytelling is a universal language, the Listening Well Experience can be delivered in any language, to any age group, and with any population. Of particular interest is developing bi-lingual, bicultural facilitators to serve monolingual populations. Along with a wellness and recovery story, some key outcomes are reclaimed lives, the realization that one is not alone, and increased personal empowerment.

Inspired Leadership This program focuses on strengths (Appreciative Inquiry) and has been successfully used with corporations, not-for-profits, government systems, groups, and individuals. Some key outcomes are discovered strengths, enhanced relationships, clarified intentions, and defined next steps to create the work, life, and world desired.

LWE Group Facilitator Certification (Train-the-Trainer)This program develops the ability to facilitate the Listening Well Experience in a group format. Participants learn the basics of modeling leadership, using self as an instrument of change, and applying cross-cultural teachings and Appreciative Inquiry. Some key outcomes are a developed and sustained learning environment, improved language and story development, and enhanced co-facilitation and feedback skills. LWE Group Facilitator Certification is provided at the close of the workshop based upon successful demonstration of core competencies.

For more information on Listening Well contact the organization at 831-421-9393 or contact@listeningwell.net You may also access the Listening Well Web site at http://www.listeningwell.net/

In My Experience… Learning From a Troubled Genius
Originally published in The Washington Post on Tuesday, December 18, 2001When 25 Years Ago the Author Met John Nash, the Nobel-Winning Schizophrenic, She Behaved Badly. She's Beginning to Understand Why.1By Miriam DavisHis shorts were a bright plaid, glaringly different from the pattern on his shirt. On his feet he wore red sneakers. On the self-consciously earth-toned Princeton campus of 1976, he stood out. "Who's that?" I asked my friends in the math department about the odd-looking figure who hung around the math area, which faced the biology lab where I'd begun working on my doctorate."Oh, that's Nash," came the reply."Who's he?" I persevered."He's crazy, but he won't hurt you." End of discussion.That was my introduction to math genius John Nash -- years before he was awarded his Nobel prize in economics, years before his recovery from schizophrenia, years before the release of the film version of his biography, "A Beautiful Mind," which is scheduled to arrive in theaters in January. And years before I began to care about the stigma of mental illness.

I didn't question my friends' dismissiveness. Nash's illness reduced him to insignificance for me, as it did for so many others.

Like them, I grew accustomed to seeing "The Ghost of Fine Hall," as he was known, in and around the math department where he had been a fixture for years -- a department in which he no longer had any formal affiliation but where all knew of his former glory. Outside Princeton, many academics assumed he was dead.The trouble was that I saw this dead man walking everywhere on campus. He could hardly be missed. Hunch-shouldered, arms hanging, he wandered the grounds wearing a vacant expression and the same mismatched plaids in all weather, regardless of season. He muttered to himself and made no eye contact. His appearance was so unsettling that I never said hello or bothered with a half-smile. I never wondered who he really was beneath the off-putting exterior, why he was there, whether he had a family, what his background was. I simply tried to steer clear.

It took me 20 years to realize that in writing him off as almost subhuman, I'd fallen into the smug ignorance of most Americans. Sixty percent of them, according to one comprehensive national survey, want to distance themselves from people with schizophrenia.
As a grad student in the 1970s, I was, as they say, part of the problem.

Keep reading Miriam Davis’ story by clicking here.

1 The author used the term “schizophrenic” in the original publication but the ADS Center advocates for use of the phrase “person with schizophrenia.” Person-first language helps us to look at an individual, not his illness.

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