Why It's Important to Document Mental Health
The story of mental health in New York State is a compelling and critical part of our history as New Yorkers. But significant elements of that history are in danger of being lost. We have very limited information that reflects the lives and perspectives of people diagnosed with psychiatric conditions or their families; the social workers, medical personnel, and support staff, who provide services and assistance; the state, local, private and community institutions and organizations run by professional, non-professional, and recipient-controlled groups; the range of research and treatment philosophies and approaches; and policy and legislation.
Significant developments happened in New York during the 19th and early 20th centuries, but critical developments also follow World War II, and continue today for example, widespread use of psychiatric medications, deinstitutionalization, establishment of civil rights and legislation to protect mental health service recipients, and the emergence of self-help strategies. Changes in scientific and popular perceptions of mental health have merged with the economic and political forces of each period to shape mental health policy and legislation, diagnosis and treatment, organizations ranging from large, state-operated institutions to community support groups, and the private lives of millions of New Yorkers. Central to this process during the 20th century has been the development of mental health professions and the emergence of both a mental health advocacy movement and a mental health consumer/survivor/ex-patient movement.
Throughout, the issues have been controversial, often centered on how one views or experiences particular mental health services and the system as a whole as along the spectrum between enlightened and helpful, at one end, and or barbaric and oppressive, at the other. The history is filled with stories that range from high ideals, visionary leadership, dedicated service, determined advocacy and activism, and courageous recovery to political cynicism, economic expediency, prejudice and stigma, neglect and abuse, and appalling suffering. All of this is part of the history we need to ensure survives.
In organizations, groups, and families around New York, there are rich resources that tell unique and compelling stories about people, families, communities and organizations involved in mental health concerns. These resources are not unusual. They are the ordinary results of our lives and work that hold extraordinary information. The kinds of records that may be of value can include letters, diaries, newsletters, brochures, case files (with proper access restrictions), minutes of meetings, photographs, administrative files, reports, special databases, electronic mail, web sites and a wide variety of information produced as a person or group goes about daily life and work. Many people think they have nothing that is an "historical record"but they in fact may be unaware of the treasure trove they hold for the future.
People diagnosed or identified as mentally ill have been subjected to prejudice and discrimination in this country throughout our history. This prejudice has been reflected in the language used to identify both the phenomena and the people; even terms initially considered neutral or technical tend to become tainted and therefore pejorative. To combat prejudice and discrimination, people and groups, especially the recipients of mental health services, are continually searching for and adopting terms intended to restore dignity and respect to the language used in the area of mental health. At this time, there is no standard nomenclature. Among the terms currently in use are, for extreme mental and emotional states, mental illness, mental disorder, and psychiatric disability; and for individuals, people with psychiatric histories, recipients of services, consumers, psychiatric survivors, ex-patients, and people diagnosed with mental illness. These terms are used interchangeably in this plan, reflecting a range of people whose perspectives and experiences are important to include in the documentary record of mental health in New York. (Some pejorative terms, such as lunatic, insane, mad, or crazy, were in standard, formal usage during earlier historical periods and are now common in idiomatic speech. While these terms are therefore likely to appear in historical and current records and may need to be used in that context, this plan does not, of course, employ them as acceptable terms to describe people or psychiatric phenomena. However, some of these terms are being reclaimed by some people who identify as psychiatric survivors as part of their strategy to combat prejudice and discrimination.)
State agencies and private institutions that provide mental health services operate under strict legal and ethical codes to protect the privacy of individuals who have psychiatric histories or have official interaction with mental health service providers. The intent of this project is to make available the historical record of mental health as a vital part of New York's history while maintaining strict adherence to the law and to ethical principles regarding privacy. It is imperative that repositories or other organizations that hold mental health records be aware of and adhere to these legal and ethical codes. For more information about policies and procedures related to privacy and the confidentiality of records, the following resources are available:
- "Your Right to Know: New York States Open Government Laws," a booklet published by the New York Department of State and available by calling (518) 474-2518 or on the Web at Committee on Open Government.