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We've Been Too Patient: Voices from Radical Mental Health--Stories and Research Challenging the Biomedical Model
25 unflinching stories and essays from the front lines of the radical mental health movement
Overmedication, police brutality, electroconvulsive therapy, involuntary hospitalization, traumas that lead to intense altered states and suicidal these are the struggles of those labeled “mentally ill.” While much has been written about the systemic problems of our mental-health care system, this book gives voice to those with personal experience of psychiatric miscare often excluded from the discussion, like people of color and LGBTQ+ communities. It is dedicated to finding working alternatives to the “Mental Health Industrial Complex” and shifting the conversation from mental illness to mental health.
Overmedication, police brutality, electroconvulsive therapy, involuntary hospitalization, traumas that lead to intense altered states and suicidal these are the struggles of those labeled “mentally ill.” While much has been written about the systemic problems of our mental-health care system, this book gives voice to those with personal experience of psychiatric miscare often excluded from the discussion, like people of color and LGBTQ+ communities. It is dedicated to finding working alternatives to the “Mental Health Industrial Complex” and shifting the conversation from mental illness to mental health.
264 pages, Paperback
First published July 9, 2019
55 people are currently reading
1886 people want to read
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June 8, 2021
An incredible anthology that I would recommend to anyone interested in mental health and/or social justice. The 25 essays in this book discuss people’s lived experiences with mental illness and the mental health industrial complex with candor and self-insight. I appreciate how these authors avoid platitudes or trite narratives; there’s no simple “I went to therapy and everything got better right away” or “I learned to love myself and then my mental health improved.” Rather, these writers share their painful yet hopeful journeys that contain stigmatized topics such as involuntary hospitalizations, electroconvulsive shock therapy, suicidality, and more. While society may be a little less judgmental toward select mental health topics such as anxiety and depression, we still have a lot of work to do toward destigmatization so I am so grateful to these writers for baring vulnerable parts of themselves onto the page. In terms of quality of writing, I felt that many if not all of these writers had enough distance from and self-reflection about their essay topics to create compelling and enjoyable narratives. As a survivor of PTSD and anorexia who still occasionally goes through rough patches these writers’ courage felt healing and empowering to read.
I also loved the frank ways these writers challenged psychiatry and even therapy. The collection as a whole does not take an anti-psychiatry or anti-therapy stance; the essayists recognize that medication can be extremely helpful as can therapy. However, they point out several important injustices in the mental health industrial complex such as pharmaceutical companies and psychiatrists that profit off of dispensing medication instead of offering more compassionate and client-centered care. The writers point out alternatives and supplements to therapy too, such as peer support and mutual aid. The writers’ diverse social identities spanning race, sexual orientation, and ability status strengthen this collection and lend credence to its critiques of white supremacy, homophobia, and hegemonic capitalism, structures that negatively impact people’s mental health. I wish this book were more popular so I hope you consider reading it!
I also loved the frank ways these writers challenged psychiatry and even therapy. The collection as a whole does not take an anti-psychiatry or anti-therapy stance; the essayists recognize that medication can be extremely helpful as can therapy. However, they point out several important injustices in the mental health industrial complex such as pharmaceutical companies and psychiatrists that profit off of dispensing medication instead of offering more compassionate and client-centered care. The writers point out alternatives and supplements to therapy too, such as peer support and mutual aid. The writers’ diverse social identities spanning race, sexual orientation, and ability status strengthen this collection and lend credence to its critiques of white supremacy, homophobia, and hegemonic capitalism, structures that negatively impact people’s mental health. I wish this book were more popular so I hope you consider reading it!
August 30, 2019
As the cover of the book shows, "We've Been Too Patient" is a collection of voices from radical mental health movements in a variety of mediums including storytelling, poetry, academic essays, and other types of nonfiction. It is organized into two larger sections- narratives and interventions- allowing contributors to share stories and offer solutions. This book did a relatively good job of being inclusive of a wide range of voices from people who have identified with, been diagnosed with, or otherwise personally experienced mental health disturbances in ways that were medicalized (with and without their consent.) This is a refreshing update from a lot of radical mental health voices that were often heard the most- mainly middle class white people with depression and anxiety disorders (whose voices have also helped me immensely, don't get me wrong.) This book offers a much needed expansion on the topic and I am happy to see that it will likely be accessed by wider audiences outside the movements such as mental health professionals currently immersed in the biomedical model. I am going to use diagnostic terms in this review for brevity's sake and because I honestly don't have a wide enough vocabulary to know how to describe these experiences otherwise. However, I do not intend to label anyone's experience. I have chosen to share more personal anecdotes than I usually do in reviews because it was the only way I could think of to properly explain my nuanced perspective.
I want to start with two minor notes, one positive and one negative.
First, this is not something I normally discuss, but the graphic design of the print version of this book is really lovely. The use of different complementary fonts, light grey graphics, and dandelion seeds scattered across each chapter was a really nice touch and made for an enjoyable experience of a tough subject.
Second, there is a troublesome problem with the foreword of this book. Given that Deaf communities are used as a model for radical mental health movements in more than one instance in the book, it was pretty disappointing that Robert Whitaker used "deaf" as a pejorative at least 5 times in his only 8 page introduction. I am not sure if it was not properly edited, or if it was included after the rest of the book (which is very well edited) was put together. I won't dwell on it much longer, but it should have been addressed.
Moving on... I have fairly long history with radical mental health communities and literature. Some of it was amazing and probably saved my life. The Icarus Project literature was handed to me at a time that I really needed it and it changed me for the better. At other times, some aspects of these communities and ideas created struggles for me and other members. I do believe that sometimes, individuals in radical mental health movements can swing into territory that often excludes those with the most severe symptoms and or struggles with mental health. In their valid and desperate attempts to escape the often abusive biomedical psychiatric model, they'd create a polar opposite model and express that there is no mental illness, only problems with society and environment. This lacked nuance and mainly manifested in people reducing everyone into a category of creative artists with "dangerous gifts," claiming mental illness was not actually an illness, just a different way of thinking pathologized by society. There is a lot of truth to this, but it can be all too reductive. There are many radical people who have never and will never consider themselves particularly creative nor do they see their mental health struggles as gifts in any way. A similar critique can be made of the social model of disability. There have been healthy disabled people who claim that with societal and environmental changes, all disabled people could have access to the world as abled people do. But, for unhealthy disabled people- such as those with chronic illness(es)- this would surely improve things and help, but would not make their struggles disappear.
I am a person who has dealt with psychiatric abuses and has been in the system in some shape or form since I was 9 years old. I have had the bruises on my arms from hospital workers being rough for the fun of it and was on a giant cocktail of psych meds (including some later taken off of the market for destroying organs) as a teen that I believe caused damage to my development. I also got a B.S. in psychology, did research in cognitive neuroscience, worked in a clinical facility for people with intellectual disabilities and mental health struggles, and still voluntarily go to therapy because I believe that psychology holds many truths. Along with my personal experiences, have one parent who died by suicide and another that has extremely severe, near constant paranoid psychosis. They refuse any treatment and live in a nightmare world. When you have a beloved and caring parent who claiming everyone around them is part of a vile government conspiracy to destroy them because of something they wrote on their computer; someone who is getting into fights with people on the street for being "in on it;" someone who is banging on your windows or yelling in your face in the middle of the night after hearing voices telling them you are being pimped out for heroin by your roommate to the free masons and lying about it; someone who later claims you are dead and visit them as an angel to tell them that the corporeal version of you is an evil doppelganger; someone who gets arrested 3 times in one week- once found sitting in the middle of a highway in the dark- and who disappears for years at a time to escape anyone who tries to help, it becomes very distressing to hear all of this boiled down to just a "different way of thinking" or just a manifestation of a struggle with "dangerous gifts."
Did the state of the world, trauma, stressors, triggers, and other circumstances outside of biological functions play a huge and dominating part in this? Absolutely. But, I have spoken to radical mental health community members who experience psychosis who shared that it is only (often non-consensual) hospitalization and/or drugs that help them get out of psychosis. They shared that it was terrible every time and that the system needed major improvement, but it would happen any time they stopped their meds. They often feared judgment from other radical mental health people if they spoke the truth about this. One of the only essays in the book that centers psychosis- by Imogen Prism- touches upon this in stating, "For me, meds do the job. They do it quicker and dirtier, and with potentially devastating long-term results, but they do the job." They express that they have survived 4 involuntary hospitalizations within terrible often medieval institutions. They also admit that they are "not sure" of the solution. They do offer many ways that they have found within and outside these systems that work for them and may work for others. This was very real, honest, and was one of the best essays in the book.
While the phrase "dangerous gifts" is used multiple times by multiple contributors in this book, they use it in a way that it was likely intended by its original creators- as descriptors of how they relate to their own experiences with mental health struggles- not a dismissal of any need for medical intervention. There is a constant focus on adopting recovery and harm reduction models over biomedical models- which is something I whole-heartedly agree with. The adoption of trauma informed therapy and community models of mental health and support were and still are some of the best teachings that come from radical mental health movements. Many writers shared very real experiences with pain and heartache that came with their struggles along with tangible techniques they used to keep themselves stable enough to enjoy life. Some of the people who were involved in founding radical mental health communities like The Icarus Project went on to get degrees and positions in psychology fields and are bettering the system.
There was only one academic essay- by Jonah Bossewitch- that manifested my aforementioned issues with the "dangerous gifts" and "mental health issues are not illnesses, just problems with society" type of thinking, but the essay also offered a lot of really good history, information, and critiques. So, I still consider it a very positive and necessary contribution to the book. The entries by Kelechi Ubozoh were particularly informative in that they included both stories of her personal and community experiences with mental health along with a large catalogue of suggestions of how to deal with mental health struggles. She also brought a personal perspective that included the intersection of race, gender, and Black community with mental health struggles. These are conversations that Black people have been having for some time, but they have not been centered enough in radical movements.
The epilogue of the book by Jessie Roth ties everything together in recapping the need for recovery and harm reduction models over purely medical models. They also remind the reader to look at the book as a whole. The wide variety of voices make it clear that these communities are not one dimensionally anti-psychiatry (like scientologists, for instance.) They remind the reader that for some people, medications are ok, they and the system just need a ton of improvement.
The only thing that I think this book needed was more voices talking about psychosis and the best ways to cope with it, particularly when it becomes dangerous (usually for the person suffering it more than anyone else.) Psychosis is one of the experiences that is punished tortuously in institutions and represents a huge amount of people- especially sufferers of color- that are murdered by police. Some techniques that work for non-psychotic disorders like depression may help, but psychosis also needs it's own focus. I still often feel lost in finding ways to navigate that aspect of mental health crises. I believe this book could appeal to a wide variety of readers from people like me to completely unexposed psychiatrists in the field looking to update their education. In fact, the latter group needs to read this book. The voices represented here are far reaching and diverse and the people contributing were willing to be vulnerable and share their lives with us. This is more difficult than many people may imagine. So, to those in the field, accept this gift with open arms. We all could learn a thing or three.
This was also posted to my blog.
I want to start with two minor notes, one positive and one negative.
First, this is not something I normally discuss, but the graphic design of the print version of this book is really lovely. The use of different complementary fonts, light grey graphics, and dandelion seeds scattered across each chapter was a really nice touch and made for an enjoyable experience of a tough subject.
Second, there is a troublesome problem with the foreword of this book. Given that Deaf communities are used as a model for radical mental health movements in more than one instance in the book, it was pretty disappointing that Robert Whitaker used "deaf" as a pejorative at least 5 times in his only 8 page introduction. I am not sure if it was not properly edited, or if it was included after the rest of the book (which is very well edited) was put together. I won't dwell on it much longer, but it should have been addressed.
Moving on... I have fairly long history with radical mental health communities and literature. Some of it was amazing and probably saved my life. The Icarus Project literature was handed to me at a time that I really needed it and it changed me for the better. At other times, some aspects of these communities and ideas created struggles for me and other members. I do believe that sometimes, individuals in radical mental health movements can swing into territory that often excludes those with the most severe symptoms and or struggles with mental health. In their valid and desperate attempts to escape the often abusive biomedical psychiatric model, they'd create a polar opposite model and express that there is no mental illness, only problems with society and environment. This lacked nuance and mainly manifested in people reducing everyone into a category of creative artists with "dangerous gifts," claiming mental illness was not actually an illness, just a different way of thinking pathologized by society. There is a lot of truth to this, but it can be all too reductive. There are many radical people who have never and will never consider themselves particularly creative nor do they see their mental health struggles as gifts in any way. A similar critique can be made of the social model of disability. There have been healthy disabled people who claim that with societal and environmental changes, all disabled people could have access to the world as abled people do. But, for unhealthy disabled people- such as those with chronic illness(es)- this would surely improve things and help, but would not make their struggles disappear.
I am a person who has dealt with psychiatric abuses and has been in the system in some shape or form since I was 9 years old. I have had the bruises on my arms from hospital workers being rough for the fun of it and was on a giant cocktail of psych meds (including some later taken off of the market for destroying organs) as a teen that I believe caused damage to my development. I also got a B.S. in psychology, did research in cognitive neuroscience, worked in a clinical facility for people with intellectual disabilities and mental health struggles, and still voluntarily go to therapy because I believe that psychology holds many truths. Along with my personal experiences, have one parent who died by suicide and another that has extremely severe, near constant paranoid psychosis. They refuse any treatment and live in a nightmare world. When you have a beloved and caring parent who claiming everyone around them is part of a vile government conspiracy to destroy them because of something they wrote on their computer; someone who is getting into fights with people on the street for being "in on it;" someone who is banging on your windows or yelling in your face in the middle of the night after hearing voices telling them you are being pimped out for heroin by your roommate to the free masons and lying about it; someone who later claims you are dead and visit them as an angel to tell them that the corporeal version of you is an evil doppelganger; someone who gets arrested 3 times in one week- once found sitting in the middle of a highway in the dark- and who disappears for years at a time to escape anyone who tries to help, it becomes very distressing to hear all of this boiled down to just a "different way of thinking" or just a manifestation of a struggle with "dangerous gifts."
Did the state of the world, trauma, stressors, triggers, and other circumstances outside of biological functions play a huge and dominating part in this? Absolutely. But, I have spoken to radical mental health community members who experience psychosis who shared that it is only (often non-consensual) hospitalization and/or drugs that help them get out of psychosis. They shared that it was terrible every time and that the system needed major improvement, but it would happen any time they stopped their meds. They often feared judgment from other radical mental health people if they spoke the truth about this. One of the only essays in the book that centers psychosis- by Imogen Prism- touches upon this in stating, "For me, meds do the job. They do it quicker and dirtier, and with potentially devastating long-term results, but they do the job." They express that they have survived 4 involuntary hospitalizations within terrible often medieval institutions. They also admit that they are "not sure" of the solution. They do offer many ways that they have found within and outside these systems that work for them and may work for others. This was very real, honest, and was one of the best essays in the book.
While the phrase "dangerous gifts" is used multiple times by multiple contributors in this book, they use it in a way that it was likely intended by its original creators- as descriptors of how they relate to their own experiences with mental health struggles- not a dismissal of any need for medical intervention. There is a constant focus on adopting recovery and harm reduction models over biomedical models- which is something I whole-heartedly agree with. The adoption of trauma informed therapy and community models of mental health and support were and still are some of the best teachings that come from radical mental health movements. Many writers shared very real experiences with pain and heartache that came with their struggles along with tangible techniques they used to keep themselves stable enough to enjoy life. Some of the people who were involved in founding radical mental health communities like The Icarus Project went on to get degrees and positions in psychology fields and are bettering the system.
There was only one academic essay- by Jonah Bossewitch- that manifested my aforementioned issues with the "dangerous gifts" and "mental health issues are not illnesses, just problems with society" type of thinking, but the essay also offered a lot of really good history, information, and critiques. So, I still consider it a very positive and necessary contribution to the book. The entries by Kelechi Ubozoh were particularly informative in that they included both stories of her personal and community experiences with mental health along with a large catalogue of suggestions of how to deal with mental health struggles. She also brought a personal perspective that included the intersection of race, gender, and Black community with mental health struggles. These are conversations that Black people have been having for some time, but they have not been centered enough in radical movements.
The epilogue of the book by Jessie Roth ties everything together in recapping the need for recovery and harm reduction models over purely medical models. They also remind the reader to look at the book as a whole. The wide variety of voices make it clear that these communities are not one dimensionally anti-psychiatry (like scientologists, for instance.) They remind the reader that for some people, medications are ok, they and the system just need a ton of improvement.
The only thing that I think this book needed was more voices talking about psychosis and the best ways to cope with it, particularly when it becomes dangerous (usually for the person suffering it more than anyone else.) Psychosis is one of the experiences that is punished tortuously in institutions and represents a huge amount of people- especially sufferers of color- that are murdered by police. Some techniques that work for non-psychotic disorders like depression may help, but psychosis also needs it's own focus. I still often feel lost in finding ways to navigate that aspect of mental health crises. I believe this book could appeal to a wide variety of readers from people like me to completely unexposed psychiatrists in the field looking to update their education. In fact, the latter group needs to read this book. The voices represented here are far reaching and diverse and the people contributing were willing to be vulnerable and share their lives with us. This is more difficult than many people may imagine. So, to those in the field, accept this gift with open arms. We all could learn a thing or three.
This was also posted to my blog.
January 11, 2021
This was an incredible anthology of narratives by neurodiverse persons, psychiatric survivors, and mental health advocates across races, sexualities, and gender identities who challenged the pharmaceutical-psychiatric biomedical model with radical mental health.
Comprised of two parts: narratives and radical interventions, the readers gain a better understanding by hearing a multitude of perspectives on involuntary hospitalizations, over medication, and trauma’s role on “intense altered states and suicidal thoughts”. The narratives also press the reality in which we cannot disregard sociopolitical roles on mental health such as the effects of racism, transphobia, homophobia, xenophobia, ableism, sexism, etc. perpetuated in a white supremacist and capitalistic society. This is further discussed in Elisa Magon’s essay, “Infiltrating the Mental Health Industrial Complex” where she explains how trauma isn’t exclusively interpersonal but structural as well. A key point about mental illness that is discussed in this anthology is that the definitions of what is “abnormal” reflects on what is acceptable in the predominant society at the time (e.g. homosexuality was pathologized in an earlier version in the DSM).
Peer support, mutual aid, trauma informed care, cultural awareness/sensitivity, somatics, etc. are offered as interventions outside of biomedical care that can greatly and positively impact those who are experiencing trauma or undergoing unpleasant altered states of mind. This book is not anti-psychiatry and does not criticize those who choose to be on medications or diagnosis, but rather pushes the importance of the individual’s choice and emphasizes the necessity of narratives of lived experiences to be incorporated in psychiatry. This book opens the possibility of the relationship between peer support specialists and mental health clinicians to work together in order to ensure quality mental health care best fit for individuals according to their backgrounds and personal needs.
Comprised of two parts: narratives and radical interventions, the readers gain a better understanding by hearing a multitude of perspectives on involuntary hospitalizations, over medication, and trauma’s role on “intense altered states and suicidal thoughts”. The narratives also press the reality in which we cannot disregard sociopolitical roles on mental health such as the effects of racism, transphobia, homophobia, xenophobia, ableism, sexism, etc. perpetuated in a white supremacist and capitalistic society. This is further discussed in Elisa Magon’s essay, “Infiltrating the Mental Health Industrial Complex” where she explains how trauma isn’t exclusively interpersonal but structural as well. A key point about mental illness that is discussed in this anthology is that the definitions of what is “abnormal” reflects on what is acceptable in the predominant society at the time (e.g. homosexuality was pathologized in an earlier version in the DSM).
Peer support, mutual aid, trauma informed care, cultural awareness/sensitivity, somatics, etc. are offered as interventions outside of biomedical care that can greatly and positively impact those who are experiencing trauma or undergoing unpleasant altered states of mind. This book is not anti-psychiatry and does not criticize those who choose to be on medications or diagnosis, but rather pushes the importance of the individual’s choice and emphasizes the necessity of narratives of lived experiences to be incorporated in psychiatry. This book opens the possibility of the relationship between peer support specialists and mental health clinicians to work together in order to ensure quality mental health care best fit for individuals according to their backgrounds and personal needs.
April 6, 2023
A thought provoking anthology… touching on some very hard topics. It is so important to understand psychology/mental health from a subjective experience and I commend this anthology for doing so.
My main issue is the overall argument of this anthology which suggests less focus on mental illness and more focus on mental health. Yet, the two are intertwined. As much as I wanted to advocate for this anthology, there is no mental health, without understanding the biopsychosocial model of mental illness.To move away from the scientific underpinnings of mental health is radical in itself. Unfortunately, there are flaws in psychiatry (I don’t think many people would disagree) but there are flaws in attempting to move completely away from psychiatry.
In a world which proposes a merge between understanding mental health and mental illness as interchangeable without stigma (moving away from the barbarism of ECT, police brutality, unnecessary institutional, overuse use of pharmaceuticals) we could see a more accessible, universal, sustainable approach to mental health.
My main issue is the overall argument of this anthology which suggests less focus on mental illness and more focus on mental health. Yet, the two are intertwined. As much as I wanted to advocate for this anthology, there is no mental health, without understanding the biopsychosocial model of mental illness.To move away from the scientific underpinnings of mental health is radical in itself. Unfortunately, there are flaws in psychiatry (I don’t think many people would disagree) but there are flaws in attempting to move completely away from psychiatry.
In a world which proposes a merge between understanding mental health and mental illness as interchangeable without stigma (moving away from the barbarism of ECT, police brutality, unnecessary institutional, overuse use of pharmaceuticals) we could see a more accessible, universal, sustainable approach to mental health.
October 14, 2023
this anthology is soso good and informational! i've been reading it slowly on my phone and it's made me so much more aware of how evil nd rude the psychiatric model of mental health is :00
September 20, 2022
I could not get past the lateral ableism throughout the book. Such a great premise overall, but I could only take so much of the "If I was physically sick, people wouldn't treat me this way", as if physically disabled people aren't harmed and abused by the same systems. Having a quote from someone openly transmisogynistic also wasn't great and is what made me finally put it down.
July 14, 2019
This book is a goddamn treasure.
October 10, 2020
At AWP in March 2020 I wandered into a talk about this book. It was already in process and I entered right before a writing exercise! Rare at AWP (unfortunately). Since I hadn't heard the discussion prior I scribbled a few things and decided to stay and listen. What people wrote about their experience in mental health was riveting. The reading and discussion was compelling enough that I bought the book, and I'm glad I did. The book is an accumulation of essays, and poems. It has a forward by Robert Whitaker, author of Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America. I have his book and heard him read from it. He is a science journalist who questioned and researched the massive use of antidepressants.
Each article I read was insightful and fair. In the article, Infiltrating the Mental Health Industrial Complex, by Elisa Magon, "a Xicanx nonbinary queer trans-femme radical social worker and mad activist." She quotes James Baldwin, "The victim who is able to articulate the situation of a victim has ceased to become a victim: he or she becomes a threat."
This book addresses stigma, structural racism and oppression and inequality, centering the marginalized, intergenerational trauma, and other complex issues from a professional and client centered approach.
In the essay "Dangerous Gifts: A New Wave of Mad Resistance" Jonah Bossewitch who works at the Mental Health Association of New York City, brings up correlations with ACT UP. He refers to Stephen Epstein who "describes the interactions between traditional "insiders" and "outsiders" of scientific (and medical) knowledge production (1996). He argues that AIDS activists transformed themselves from a "disease constituency" to an "alternative basis of expertise" whose contributions were especially evident in the politics of treatment. These activities played a key role in altering the way that biomedicine is conducted, challenging the morality of double-blind, placebo-controlled studies and influencing the ways the FDA approves and speeds drugs through the approval process. Epstein claims that the AIDS crisis mobilized a critique of the medical-industrial complex, calling it to task for its lust for profit and control over patients'—and especially women's—bodies."
YES to all that. He sees the work ACT UP did as a way mental health can begin to transform. He goes on to look at sociological findings that, "have demonstrated that diversity enhances organizational creativity and innovation, while homogeneity stifles it (Burt 2004; Stark 2009). Identifying and questioning assumptions, crafting compromises, and designing innovative alternatives are some of the reasons why diversity and inclusion are so important."
I recommend this book to anyone working in mental health, it is an important contribution and needs wide distribution.
Each article I read was insightful and fair. In the article, Infiltrating the Mental Health Industrial Complex, by Elisa Magon, "a Xicanx nonbinary queer trans-femme radical social worker and mad activist." She quotes James Baldwin, "The victim who is able to articulate the situation of a victim has ceased to become a victim: he or she becomes a threat."
This book addresses stigma, structural racism and oppression and inequality, centering the marginalized, intergenerational trauma, and other complex issues from a professional and client centered approach.
In the essay "Dangerous Gifts: A New Wave of Mad Resistance" Jonah Bossewitch who works at the Mental Health Association of New York City, brings up correlations with ACT UP. He refers to Stephen Epstein who "describes the interactions between traditional "insiders" and "outsiders" of scientific (and medical) knowledge production (1996). He argues that AIDS activists transformed themselves from a "disease constituency" to an "alternative basis of expertise" whose contributions were especially evident in the politics of treatment. These activities played a key role in altering the way that biomedicine is conducted, challenging the morality of double-blind, placebo-controlled studies and influencing the ways the FDA approves and speeds drugs through the approval process. Epstein claims that the AIDS crisis mobilized a critique of the medical-industrial complex, calling it to task for its lust for profit and control over patients'—and especially women's—bodies."
YES to all that. He sees the work ACT UP did as a way mental health can begin to transform. He goes on to look at sociological findings that, "have demonstrated that diversity enhances organizational creativity and innovation, while homogeneity stifles it (Burt 2004; Stark 2009). Identifying and questioning assumptions, crafting compromises, and designing innovative alternatives are some of the reasons why diversity and inclusion are so important."
I recommend this book to anyone working in mental health, it is an important contribution and needs wide distribution.
March 16, 2020
Fabulous, well-curated collection of personal accounts from the consumer/survivor/ex-patient/mad pride world. Super appreciate the inclusion of BIPOC and queer/non-binary voices that are so often excluded from mainstream mental health narratives. Part 2 lays out some compelling peer-led programs and attitude shifts that can be implemented in communities. While I love The Icarus Project, it was mentioned too much (kind of product placement-y) and to the exclusion of other similar initiatives. I would have loved to see representation and mention of other c/s/x organizations like National Coalition for Mental Health Recovery, Rethinking Psychiatry, etc. Thank you to every gifted person who contributed to this book and movement. I will lift your voices and share your requests with my colleagues and demand change!
November 8, 2019
It took me months to finish this book. I was so engaged in every chapter, sometimes I read them over and over again. Sometimes I went down rabbit holes and researched footnotes that led me to bios, presentations, even full-on webinars that I signed up for and watched front to back. I created an entire wiki from the source material in this book. For someone like me, who has felt very much alone in the "mad underground" for decades, this beautiful text was like finding a treasure chest and a new family at the same time. I cannot thank the editors and contributors enough for collaborating on this wonderful anthology. Kudos, and here's to hoping there are follow-up projects in the works!
October 27, 2019
As a social work graduate student, I find this to be important reading that counters some of the narratives told by mainstream practitioners. I appreciate the honest look at suicide and “serious mental illness,” and how a critical approach to power and systems of ableism, capitalism, and other oppressions render some as an unwanted ‘other.’ Reading the narratives of those we have outcast and ignored is so important, especially in the tumultuous times we live in.
January 22, 2024
Collectivist activism posing as a discourse on the negatives of the medical model.
A real shame, as the medical model, psychologists being pill pushers & often creating greater harm via their "treatment" is just the kind of literature society needs more of.
A middle class woman activist who can afford therapy via insurance & has benefitted from it, claiming having to pay a therapist creates a power imbalance in the therapeutic relationship & is somehow symbolic of the pitfalls of capitalism, is pathetic beyond comprehension.
Better sharing, help & automatic deference from the community is cited as a positive aim for improvement & indeed it could well be.
However, with the multiple references to intersectionality & standpoint theories, the community & the people whose very identities are made & broken by it may well find, after difficult self reflection, that it is an identity based on such caustic & capricious ideas that causes so many problems in the first place, alongside the medical model.
A real shame, as the medical model, psychologists being pill pushers & often creating greater harm via their "treatment" is just the kind of literature society needs more of.
A middle class woman activist who can afford therapy via insurance & has benefitted from it, claiming having to pay a therapist creates a power imbalance in the therapeutic relationship & is somehow symbolic of the pitfalls of capitalism, is pathetic beyond comprehension.
Better sharing, help & automatic deference from the community is cited as a positive aim for improvement & indeed it could well be.
However, with the multiple references to intersectionality & standpoint theories, the community & the people whose very identities are made & broken by it may well find, after difficult self reflection, that it is an identity based on such caustic & capricious ideas that causes so many problems in the first place, alongside the medical model.
December 30, 2023
Really enjoyed this and found it very relevant as someone who entered the mental health field professionally due to my own mental health struggles, only to be hurt and disheartened by the way other professionals talk about neurodiverse groups and how the current accepted models for mental health treatment are another extension of oppression. I wasn't familiar with peer support outside of a substance use recovery context so I will definitely be looking into it more. I do think the anthology itself left some to be desired as far as structure and conciseness. Many of the texts for example repeated at length the same introductory information to The Icarus Project that had already been explained previously. I think the arrangement of the entries could've been adjusted some for more clarity.
July 5, 2024
A truly insightful collection that provided a more inclusive look at mental health. As someone who's been a consumer of the industrial medical complex for 20 years, this was at once validating and encouraging. Highly recommend!
August 10, 2021
A must-read for anyone who supports others' mental health.
January 31, 2022
Good read and I really enjoyed the format of essays from multiple authors. It really brought forward how important a support network is.
October 22, 2022
Highly recommend this read. Well written and packed with information.
November 19, 2022
Really, really loved this book
September 17, 2024
Very informative.
May 15, 2025
Much needed perspective. I appreciated the various points of view presented.
November 13, 2019
A series of 25 eye opening essays giving an real insight of those struggling with suicide, schizo disorder and bipolar disorder. The books really dives into the complexity of mental illness, stereo types and industries oversimplification of painting it merely as a chemical imbalance. The stories were brilliantly crafted, making very nuanced arguments about the role of faith in treatment, the over reliance on medication and the heritable nature of the diseases. The book doesn't recommend people to avoid using medication, but rather outlines how the system can be improved with peer advocates, evolving beyond the biomedical model. Towards the end of the book many suggestions on how to improve the system are asserted, moving away from the autobiographical start to the book. I would give it five stars, but towards the end it turned more into an over detailed manifesto on how to change the system, but I much rather enjoyed the stories about those who struggled, struggled deeply with mental illness by surviving suicide attempts, found meaning and support in life and eventually turned things around.
The end of the book described the "Mad Movement", where those who are mentally ill are considered part of nuerodiversity and their "dangerous gifts" should be celebrated. This argument is made in the backdrop of those who suffer from mental illness are medicated into submission, nearly making them Zombies. I agree that the insurance and medical industry finds this as the easiest thing to do, but doesn't benefit society as much as if more effort was put into finding a cure that doesn't destroy someone's autonomy. Sure it's far more costly and difficult, but the idea needs more attention. As the old quote goes "A mind is a beautiful thing to waste".
Also the book gave an inside look at mental institutions--destroying the stereotypes the public is used to from books like "One Flew over Cookoo's nest"--and exposing the mistreatment of those who are supposed to be receiving care. As a SF Bay Area native, it was interesting that many of the stories took place in Oakland and SF and the mental hospitals, described as dysfunctional, were located just a few miles from where I live. With so much attention focused on the nebulous term of mental health following rise of mass shootings in the United States, this book helps explain how the system can be improved and how we can offer more community support to our peers who face mental issues.
The end of the book described the "Mad Movement", where those who are mentally ill are considered part of nuerodiversity and their "dangerous gifts" should be celebrated. This argument is made in the backdrop of those who suffer from mental illness are medicated into submission, nearly making them Zombies. I agree that the insurance and medical industry finds this as the easiest thing to do, but doesn't benefit society as much as if more effort was put into finding a cure that doesn't destroy someone's autonomy. Sure it's far more costly and difficult, but the idea needs more attention. As the old quote goes "A mind is a beautiful thing to waste".
Also the book gave an inside look at mental institutions--destroying the stereotypes the public is used to from books like "One Flew over Cookoo's nest"--and exposing the mistreatment of those who are supposed to be receiving care. As a SF Bay Area native, it was interesting that many of the stories took place in Oakland and SF and the mental hospitals, described as dysfunctional, were located just a few miles from where I live. With so much attention focused on the nebulous term of mental health following rise of mass shootings in the United States, this book helps explain how the system can be improved and how we can offer more community support to our peers who face mental issues.
September 16, 2019
There's a part of me who wishes to be in constant dialogue with each and every contributor to this book. I'm sure I'll find myself returning to these pages again and again.
It is clear that a great deal of intention went into this book. Every contribution flows magically into the next, like a series of overlapping 3D Venn diagrams on paper. From beginning to end, I was engrossed. I think I had a hard time finishing it because I didn't want it to end. Reading this book meant feeling a lot: fear, shame, anger, sadness, hope, gratitude, longing. Honestly, it's hard to put my experience of reading this book into words.
This is a book for everyone who can feel the pincers of this society eating away at their souls; the ones who long for choice, freedom, dignity and respect--all of us.
It is clear that a great deal of intention went into this book. Every contribution flows magically into the next, like a series of overlapping 3D Venn diagrams on paper. From beginning to end, I was engrossed. I think I had a hard time finishing it because I didn't want it to end. Reading this book meant feeling a lot: fear, shame, anger, sadness, hope, gratitude, longing. Honestly, it's hard to put my experience of reading this book into words.
This is a book for everyone who can feel the pincers of this society eating away at their souls; the ones who long for choice, freedom, dignity and respect--all of us.
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July 24, 2019Radical mental health movement. Icarus project out of California. Advocate for neurodiversity
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