LERNing Through Research, Advocacy, and Experience

Laysha Ostrow, PhDNev Jones, PhD
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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:

  • Research
  • Advocacy
  • 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.

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Does Language Matter?
Laysha Ostrow, PhD
Laysha Ostrow is the CEO of Live & Learn, Inc. She received her PhD from the Johns Hopkins School of Public Health in 2014, and Master’s in Public Policy from Brandeis University’s Heller School in 2010. She identifies as a person with lived experience of the psychiatric system, the special education system, the disability system, and the family court system.
Nev Jones, PhD
Nev Jones is an assistant professor of mental health law and policy at the University of South Florida, and faculty affiliate of the Florida Mental Health Institute. Major areas of focus include strengthening user/survivor leadership in mental health research and policy and addressing structural inequalities as they intersect with mental health systems.

9 COMMENTS

  1. Well, I read Laysha’s first person account, and some of what she wrote tracked my experience as well, at least getting some discouragement about my education. What I think is most helpful in this paper is that there are a lot of people out there who have been convinced, deliberately, that they can never make something of themselves, that their only role in life is to shut up and take their drugs. I think Laysha’s story will encourage them. You don’t mention it here, but I know you had (and still do?) a support group for survivors who are grad students. Nothing like that existed when I was in school, certainly not when I was in a couple of psychology grad programs.

    When I was in law school, I was out of the closet, and already had even organized the Berkeley vote to ban shock treatment that had gotten national attention. Yet somehow I felt I didn’t belong there, that becoming an official “professional” wasn’t something I was supposed to do. It would have helped me a lot to be in contact with other people in the same situation.

    So good luck with this project and your lives.

    P.S. I remember well being in seclusion, solitary confinement therapy, and thinking hard about my life and what I wanted to happen. I was too young to have a clear idea of what took place in the outside world, but I did a lot of thinking, and came to some conclusions about right and wrong, and what kind of person I wanted to be when I grew up…if I ever was going to live that long. And I still believe in what I discovered when I was eight and nine years old. I was born to be a survivor.

  2. Nev,

    I’m glad you and Laysha posted this article here. I think it promotes much better understanding between you and MIA members.

    I was pleasantly surprised by your research brief on Stigma and Discrimination exposing that the biomedical model of psychiatry causes more stigma than social/environmental causes. I’ll need to check out your bibliography more.

    Bob Whitaker and others have posted about this unsurprising revelation on MIA:

    https://www.madinamerica.com/2010/11/%ef%bb%bfthe-successful-creation-of-a-societal-delusion-and-the-increase-in-stigma-it-has-spawned/

    As Bob says, if psychiatry really wanted to reduce stigma, instead of pushing bogus chemical imbalance and other theories on a brainwashed public, all they need to do is tell the truth: They don’t know what causes such extreme states but anyone can suffer from life crises and setbacks that can cause them, making us all vulnerable, which does cause others to understand and empathize more having been there.

    I was getting an impression that you subscribed only to main stream psychiatry on another post here, but this article challenges that, so I want to read more on this post and other sources.

    What do you think is the solution for this stigma causing rights violations you cite and main stream psychiatry in general? I realize that’s a big question and I haven’t read everything here or on other sites where you post, but maybe if you could give a brief view of where you stand on this, it might be helpful in MIA members coming to know you.

    Are you familiar with Dr. Joanna Moncrieff’s book, The Myth of the Medical Cure, whereby she recommends more of a drug/treatment centered approach without the damaging stigmas? Dr. Sandra Steingard posting here seems impressed with this idea and I think it could at least be an improvement though I’m not thrilled with existing psych drugs. That’s not to say I try to force my views on others any more than I want theirs forced on me or family.

    You were very brave to post here and I given you lots of credit for that.

    Thank you for sharing.

  3. Laysha,

    I read your story, The Children Are the Future, and My Past, and was very touched by it. I also greatly admire the fact that you are doing all you can to use your own adversity to try to help others and improve systems that are destructive to children and young adults especially.

    How did you finally escape the guardianship of your parents if you did?

    I’m glad there are students like you and Nev trying to challenge the great harms and injustice that can be done by the mental “health” system as well as those brainwashed by it whether in or out of it.

    I wish you much success in your noble goals.

  4. Wow, I think what you write about here has the potential for greatly expanding awareness around these issues. Really great, thank you for posting about this.

    I wanted to comment on one specific aspect of this article, and to share my experience with this–

    Nev, I read your article on Stigma and Discrimination and loved it, thank you. My film from 2011, Voices That Heal (on YouTube), asserts the same, that the bio-psych model and the belief that mental illness is a genetic and chronic (un-healable) disorder–neither of which I believe is even remotely true–create stigma leading to blatant discrimination, as well as false self-beliefs on the part of clients, due to these negative projections based on DSM labels. Personally, I believe this that the beliefs of bio-psychiatry are actually some of our most powerful social ills, as they project all sorts of negative and illusory beliefs into society, despite the myriad objections and claims from so many people of being harmed.

    I was the target of discrimination due to stigma in the vocational rehabilitation system of San Francisco, and I took a voc rehab agency to legal mediation over being fired due to stigma and discrimination, and succeeded in proving this. That was an arduous and rugged process, given that I was healing well and then this caused all sorts of re-traumatization and opening old wounds. While I wouldn’t wish legal issues on anyone, as the legal field is also a landmine of stigma and discrimination for all sorts of people (I was lucky to find a true advocate, which was a needle in the haystack in SF), I found that fighting for my rights and standing up for myself was inherently healing and strength-building, led to a lot of great healing and clarity for me, especially validation for my truth, which had been called ‘paranoid’ by my former employers, naturally, as this is their tactic. Such a sinister and sadistic, fear-based world…

    By the time we finally got to mediation, which they delayed for a year, the CEO, president, and program manager had all resigned. I was definitely vindicated when they proved for me that I was, indeed, accurate in my assessment of how they were operating discriminatorily and oppressively, with no idea whatsoever who their clients were, in reality.

    What was most evident to my attorney and to the mediator was that I was doing an excellent job, with glowing reviews from partners outside of this agency, and my clients totally enjoyed working with me. I was getting them jobs as per their interests and leanings, and they were succeeding. This one agency made a lot of stuff up and put it in my file (I had been a client, when they hired me part-time to staff), and when I requested to see my file, upon being fired, I discovered all of these lies, as well as a comment by the CEO, so thankfully documented by a job developer. She told me, “You don’t fit in.” That was the nail in her coffin.

    Whereas the staff really enjoyed working with me, and I had a good caseload with whom I was successful, this CEO was really not very bright, sadly, and obviously quite insecure, and she was so threatened by the little clarity I had at that time. She talked to me as though I were an imbecile, and who was I to have an opinion? They said I had ‘anger issues,’ which I never had—I had had crippling anxiety due to trauma, and I was healing beautifully from all of this, using natural methods—and they made up scenarios to make me look as though I was out of control with rage, which was never, ever the case. Whereas they were incredibly angry people, so the clients were very convenient as targets of these projections, when it served them.

    This is the weapon I saw used in SF, at large—you have a diagnosis, so you must be enraged, and we have every reason to fear you. This is exactly what comes from the system, and also the ‘professional advocates’ with whom I worked for a while, until I got wise that they were only advocates for their own funding, nothing else mattered. And these people get money from the government—to ‘provide services’—in order to operate like this! I saw them throw a few people out of their rehab program, and they’d end up on the streets, homeless and completely marginalized. It’s really brutal.

    It was unbelievable what they put me through, as others witnessed. One co-worker said to me when we had lunch one day after I got fired, “They really tortured you, it would have made me paranoid!” Of course, I allowed this to occur, because it was the first job I had had in a while, due to disability, and I loved the job and working with these clients, and I was doing well, so I fought to stay on and rectify the situation. But they wouldn’t allow it, at all cost. It was an un-mistakenly and salient case of discrimination due to stigma.

    What was really fascinating to me is that they actually thought they were being totally appropriate! I think that’s because this kind of thinking and behavior on the part of power is such the norm. Scary thought, and explains a lot about why we struggle with these issues of mental and social illness. The judgment of what is decent, fair, and humane behavior vs. what is actually harmful, dangerous, and unjust is completely blurred. Where did our integrity go??

    Whereas the system’s ‘Anti-stigma’ campaign is so false because it touts that stigma is ‘out there’ and not in the system, trying to persuade people to come into the system to get help (where, of course, they are going to get so bombarded with stigma and all sorts of ills, social and otherwise), my film asserts that the stigma actually originates in the system, and I feel, in the DSM-honoring field, to begin with. I agree with you that “the promotion of strongly biomedical conceptualizations of psychiatric disorders more likely worsens rather than improves public attitudes and acceptance.” The anti-stigma campaigns from within the system are hypocritical projections and merely serve those after funding. I’ve been part of that corrupt world, and woke up fast to what they were doing. That was the end of my relationship with anything having to do with the system and advocates. I don’t think there are any answers there, only a network of entangled problems and issues that run deep. And a lot of lies, pure and simple.

    It’s why I love what the two of you are writing about, here. Sounds like a reasonable and effective way to shift this into something actually helpful, supportive, and expansive.

    For me, personally, the solution was to dis-identify with negative projections, to seek appropriate support where it felt safe, hopeful, and encouraging, to speak my truth, and to muster up the courage to stand up for my rights, regardless of consequence. A few other things, too, which allowed me to ground and to come into balance, but this was the main recipe for beating stigma and fighting discrimination.

    Thank you for this article, Nev. I think it’s really insightful. And thank you both, Nev and Laysha, for what appears to be wonderful work. I wish you great luck and success!

  5. We wanted to thank everyone who has read our briefs so far and/or commented. We also welcome further comments directly (via our LERN email addresses) and also wanted to note that we have a low-traffic listserv for LERN that anyone is free to join (in case folks are interested).