The Lived Experience Research Network Issue Briefs series promotes change through multiple perspectives.
We recently launched our inaugural Fall 2013 edition of the LERN Issue Briefs series. These two-page briefs highlight issues of importance in the behavioral health and disabilities fields. The Issue Briefs are in three categories:
- First Person Accounts
They are written to be accessible to the public, while using rigorous evidence and critical thinking. All briefs include recommendations for research, advocacy, policy, and practice so that they can be of use to as many people as possible. The briefs include glossaries specific to the document and written by the author; research and advocacy briefs include a reference list.
The purpose of writing and publishing these briefs is to call attention to important issues, and to provide short, accessible summaries from which people can explore further studies or readings, or use them in their own efforts to advance social change at all levels and sectors of society.
Research Briefs synthesize the research evidence on a particular issue. In our Fall 2013 edition we have two research briefs. One concerns how literacy disproportionately affects service users and survivors (Mental Health and Literacy), and was written by Timothy Kelly of the University of Iowa. The other research brief in this edition is a review of the evidence on stigma against people labeled with mental disorders (Stigma and Discrimination) by Nev Jones, including evidence-based criticisms of the social effects of biomedical models of “mental illness.”
Advocacy Briefs summarize an issue for advocacy or action, for which more research may be needed. At times, these briefs may address issues for which we have a lot of evidence, but persist as advocacy and rights issues—perpetuating health and social disparities. Our fall edition includes an advocacy brief on the importance of collaboration between activists and researchers (Research-Activism: The Imperative for Behavioral Health), written by us (Nev and Laysha). We plan on addressing some more fundamental civil rights issues in upcoming advocacy briefs; because LERN’s tagline is Bridging research and advocacy by people with lived experience to advance social change, we thought we’d get this started with a bang!
We are particularly excited about our First Person Accounts (FPA) series. These briefs describe the author’s lived experience in the behavioral health or social service system, and how these experiences inform their work as a researcher, advocate, policy-maker, or practitioner. There are already many published “recovery stories” by people like us (and some of you). What we have been unable to find are FPAs that directly address the relationship between service use/”survivor-hood” and work as a mental health researcher, clinician or advocate. These relationships are often complex and may require day-to-day “code switching” or adjusting one’s self-positioning in order to address the expectations of particular contexts without losing one’s identity, values, and personal history.
What particularly motivated us about the design of the FPAs is our experience working with younger user/survivors and wanting to support them in pursuing ambitious careers in research, policy and clinical practice. We have heard things from college students such as: “I can’t go to medical school if I have schizophrenia”; “How can you be a researcher and have bipolar disorder?” There have also been stories of undergraduate and graduate students shared with us through our Discrimination in Higher Ed advocacy project (related Mad in America blog post published here) that demonstrate how monumentally difficult it can be for students with lived experience to realize their dreams in the face of stigma, discrimination and an overall lack of targeted supports. The LERN FPAs address overcoming some of these challenges and demonstrating concretely that others have done so, even in the midst of continued struggles.
We each wrote an FPA for this edition of LERN Issue Briefs. Laysha’s is The Children Are the Future, and My Past, which discusses her experience as a teenager and young adult in mental health and social service systems, and why she chose not to go into research or advocacy around youth issues. Nev’s is Academia Has Got To Change, which relays the story of being unjustly dismissed from a doctoral program after experiencing a psychotic episode that was labeled as schizophrenia, and experiencing more support from a clinician than from academic mentors. We have a third FPA in this edition by David Vognar, Madness and Wisdom, in which David talks about his experience with what was labeled schizoaffective disorder; how services, supports, and education could be improved for people who went through what he did, and how he is now a graduate social work student with the goal of effecting these changes in clinical practice–and one day, in research.
LERN plans to release the second edition of Issue Briefs in early winter. We welcome both input and writers, and are particularly interested in the perspectives and research knowledge of other people who have been labeled with behavioral health problems who have experienced the struggle and triumph of graduate school and/or post-graduate careers. Interested individuals can use the Contact Form on our website to submit ideas, or email us directly at [email protected] or [email protected]. We look forward to sharing, participating, and “LERNing” with you!
We would like to acknowledge the contributions of the other authors in this edition, as well as the editorial assistance of Pia Mauro.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.