I have realized the need for a central collection of electroshock consumer/survivor histories for quite some time. When I began researching electroconvulsive therapy (ECT), I heard and read numerous accounts from those who have undergone ECT, but they were scattered about. If a person contemplating ECT wanted to read personal accounts, s/he had to do quite a lot of digging to filter out other information and get to the personal histories.
In a small study I did in 1996, one of the biggest findings was the absolute lack of communication between doctor and patient. (Voices, 1996) And since then, that communication gap continues to be a theme in my conversations with the many people who have had ECT. Patients have experiences they try and explain to their psychiatrists, and in general, the psychiatrists aren't listening.
The 1st Person Project is an attempt to hear the voices of ECT.
My original intention was to turn this into my Ph.D. dissertation project, but a friend gave me a valuable piece of advice. (Thank you Brian) I heeded that advice, which is to choose something less dear to your heart for a dissertation topic, or you'll get bogged down for years and run the risk of never completing the degree.
Because this project is important to me, I decided to do it independently, without funding, without a dissertation committee.
I have spent a great amount of time since the opening of this website in 1995, reading the stories and talking to survivors. I realized that these stories are important, they are part of the history of electroshock, and for the most part, the ECT industry isn't interested. Rather, ECT practitioners - or shock docs to borrow from Ernest Hemingway - have shunned many of the stories. It is up to those of us in the movement to document, to collect and to embrace these many histories that exist.
The name 1st Person Project is fairly self explanatory. These are first-person accounts, and the project will be ongoing. My vision is that it will grow into a virtual museum of ECT personal histories and documentation of the practice of ECT worldwide.
Part of my educational background is in anthropology (my undergrad work includes degrees in journalism and Russian). My Master's work was in the area of cultural anthropology, with an emphasis on the Islamic cultures in the (former) Soviet Union. I bring that experience and viewpoint to this project.
Ethnography is an important part of anthropological research. It is a method of studying a group of people, typically in their own environment. Participant observation requires that the anthropologist go to the "field" and live among the culture s/he is studying, observing and also taking part in everyday life.
This ethnography is somewhat different in two ways: one, the culture of electroshock survivors is global. There are no geographical boundaries. Therefore, the "culture" must come together via cyberspace.
Clifford Geertz rebelled against the idea in anthropology that an ethnographer must remain detached and study the culture "as though it were a laboratory study of some sort." Instead, he calls for a studied self-reflexivity, or what Renato Rosaldo has called the positioned observer - an understanding that "you are somebody: you come out of a certain class; you come out of a certain place; you go into a certain country; you then go home; you do all of these things."
I am part of this community. I am an electroshock survivor myself, which is part of the reason I sense the importance of this project.
A history of electroshock - a brief outline of the history of electroshock may be found here, thanks to the generosity of Leonard Roy Frank. For a more detailed history, please read his book, History Of Shock Treatment.
I have constructed an online database that will allow individuals to create an entry and to later modify if necessary. Because of the nature of the subject - personal accounts of electroshock therapy - some people need anonymity. With many individuals, there has been excessive trauma associated with the use of electroshock, and I would rather err on the side of safety for individuals over criticisms of scientific exactness. Therefore, while requested, a valid name and email address is not required.
Participants are asked to read and agree to the Terms, which outline how this data may be used in the future. Because of its enormity, I may never be able to select a date for cutoff and begin the process of analysis, despite the fact that analysis and write up are important components of a complete ethnography.
This is a work in progress and is static. It may be somewhat experimental from the point of view of true anthropological research.
The only qualifier for filling out the entry and inclusion into the database is that the participant has personally had ECT.
Special thank you
Special thanks to two people who helped me clarify the needs of this project: First, Brian Cooper of the National Mental Health Association...we spent a lot of phone time discussing the germ of this idea, and without Brian, I would have never gotten it off the ground.
And thanks always to the great Leonard Roy Frank, a passionate friend and extraordinary thinker. He is THE historian of ECT, and his book on the history of ECT has been a Bible of sorts to me. Leonard is a survivor of horrific abuses at the hands of the system, but through it all has not lost his compassion for others or his sense of humor.Access the 1st Person Project Database (read/search only)
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