Book Review: We've Been Too Patient

Image: The cover of the book is light blue with a large illustrated dandelion going to seed. A few seeds fly away from the flower in multiple directions covering the top half of the book. In the center of the book in large white illustrated letters reads "We've Been Too Patient." Below that in smaller, navy blue letters reads "Voices from Radical Mental Health." Below that in slightly smaller white capital letters reads "STORIES AND RESEARCH CHALLENGING THE BIOMEDICAL MODEL." Across the bottom of the book are the author's names in navy blue letters "L.D. Green and Kelechi Ubozoh, Foreword bu Robert Whitaker."

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 goodreads. 

Book Review: Rebent Sinner

Image: The cover of the book is a black and white photo of a light skinned child blowing bubbles out of the window in the foreground with a snowy hill lined with black silhouettes of people standing or sitting with several people riding sleds down the center. The left side of the cover is a thick, pink margin. Just above the center of the book, across the top, reads "REBENT SINNER" in capital, white letters. Across the bottom is a thick black margin with "IVAN COYOTE" in capitalized pink letters.

Rebent Sinner is Ivan Coyote's memoir/autobiography told through magnificent short stories, essays, and letters. Coyote's skilled story telling made this book more enjoyable than most memoirs and the like that I have read. I cannot think of one that was formatted in the creative and interesting way that this one was, alternating stories that ranged from one sentence to many pages.

Coyote invoked a wide range of emotions in me with this book. There were times I would laugh out loud, times I would be nodding my head, times that my heart hurt, times that I felt understood and met, and many other feelings. Gender and sexuality are obviously large parts of this book given who Ivan Coyote is and the intention conveyed in the book's description. But, Coyote has a way of telling truths without, frankly, making me feel endlessly depressed after reading them. There is a kindness and honesty to their work that allows them to convey the whole picture of what it is like to move through the world as we Queer and trans people do. They capture the daily grind of what it's like for many of us who move through the world as visibly trans and gender non-conforming people.

Coyote holds human beings' complexities at the center of their stories. There is discussion of LGBTQ elders, or lack thereof, throughout some of the stories that reminded me of how few there often are. Coyote and I have a lot of things in common, being cross-stitching non-binary butches who are read in the world in different ways by different people every day. We also have a lot of wonderful differences such as age, residence, and experience. I saw myself in many of their stories and was grateful for the history lessons told through them. I felt that Coyote captured the complexities of generation gaps between LGBTQ people of different ages without falling into ageist tropes against older or younger people.

One thing I truly appreciated about many of Coyote's tellings was the humor brought to each situation. There are countless misgenderings that I related to that Coyote helped me laugh about. We share similar feelings about inevitable ways that people gender us, but they took what can often be anxiety-inducing situations and helped me smile and see them in a different light, or just made them feel less defeating overall. There is something that happens when all of the stories we read about ourselves are of terror and violence. That said, Coyote did not shy away from the realities of when things are truly terrifying such as AIDS crises of the 80's and 90's and trying to navigate abuse or violence in public bathrooms in (big and) small towns. Coyote did not shy away from the discomfort of being on stage in front of largely cishet audiences that they knew were visually dissecting their body piece by piece. I actually learned a lot about the critical need to be patient, intentional, and to take our time when responding to others' well-intentioned ignorance (when possible.) 

Coyote also has a lot of social commentary peppered throughout that isn't specifically based in stories of personal experiences. Their discussions of safer spaces, education, bridging generation gaps, changing with times that must change, seeing and being seen help this memoir extend even further outside the boundaries of the genre.

All in all, this was a beautiful and engaging book that was an absolute joy to read. Rebent Sinner is due out in November of 2019 and is definitely worth picking up regardless of the demographics you come from.

This review was also posted to goodreads.

Book Review: Dopesick- Dealers, Doctors, and the Drug Company that Addicted America

 Image: The cover of the book is a black and white image of a hilly town surrounded by mountains and trees which mostly obscure the small white houses and the streets that they line. The top half of the book is made up of the sky and says "dopesick" in large white capitalized letters. Below it says "dealers, doctors, and the drug company that addicted america" in small, red, capitalized letters. One the lower half of the book near the top is the author's name in larger white capitalized letters. There are a few white lettered lines of text that are unreadable.

Dopesick by Beth Macy was a mixed bag of a read for me. I understand all of the hype and stellar reviews after reading it and I appreciate that Macy brought a kind and human face of addiction to a wide audience. However, many of the ways that she chose to go about it may do more harm than good. This review is long because there were so many things to explain and dissect.

I will start with the things that Macy did right. I believe she portrayed addicts as struggling human beings to the reader, rather than immoral and heartless. She covered what it's like to be dopesick pretty well and created empathy for how inescapable the cycle of trying to get well is. She grasps how heroin grips you and doesn't let go. She did a good job highlighting the despair caused by all of the barriers to recovery and re-entering society, especially for those imprisoned by the war on drugs. She did well highlighting how Purdue Pharma deliberately ruined lives and lied in order to make money with devastating consequences. Though, I do wish more time would have been spent discussing drug costs and insurance companies. For instance, you can get opioids cheap so insurance will pay for them, but things like lidocaine patches which are risk free and effective are rarely covered.

Macy also taught me a lot about medication assisted therapy (MAT) such a suboxone. I was previously unaware that studies showed it worked far better than abstinence only programs. My experience with 12 step programs (which I have been learning to combat by becoming educated in harm reduction) led me to believe that all MAT was the same as using or was using-lite. She highlighted well how 12 step programs, rehabs, halfway houses, and other institutions malign and exclude recovering addicts on MAT. She taught me about how MAT is exploited by some doctors and professionals requiring hundreds of dollars out of pocket per month and how insurance companies often will not pay for it despite it being proven more successful than abstinence only programs. I now understand and support it as a life-saving, while imperfect, treatment that more places need to embrace.

It seems necessary that I admit while writing that I am a former heroin (and other drugs) addict, who used heavily from age 14-22, who has over 14 years "clean" under my belt. I am also now disabled with multiple chronic health conditions from cancer to severe never-ending costochondritis that have required pain management involving opioids. In the past few years, I have had 4 major surgeries, one severely necrotic tooth requiring an ER visit and opioids, and 3 other procedures under anesthesia that included fentanyl. Due to my experiences in 12 step programs, I was terrified when I had to start dealing with these now commonplace things in my life because I thought as soon as an opioid touched my system, I would lose all control and relapse. I delayed procedures and was bedridden with pain and fatigue due to my fear of trying something that would manage my pain enough to help me take care of myself when other methods failed, made things even worse, or were marginally effective. The reality is that with everything I told you, not once have I become addicted again. I have not finished a bottle of pain killers after a procedure yet, but I take them as long as I need to. I have laid in bed crying and unable to function when my pain after surgery was unmanaged and recovered more quickly from surgeries where it was managed well. I am sure my years of experience with sobriety and ability to be honest with myself and what I need is a huge reason why I've been able to navigate this. But, there are other people who have been or were never addicts who also manage it just fine. I tell this perhaps tl;dr story because it leads into two of my biggest gripes about Macy's approach to this subject.

Macy talks about opioids as if most people who use them become addicted and pretends that exposure to the drug itself alone magically turns you into an addict. This was lazy at best. There are a great many factors that lead to addiction including genetics, isolation, mental illness, untreated illness and chronic pain, insurance companies' refusal to pay for non-narcotic drugs and interventions, employment, afterschool activities, the lies of drug companies, socioeconomic status, and many other things including those science has not discovered yet. It is incredibly dangerous- especially for disabled people with chronic pain- to scare-monger like this. Macy did a really good job covering the problems with 12 step and other abstinence only treatment options, but then ends up parroting what many people in meetings say about drugs.

The second issue causing me to reference my personal story was her lack of handling of how opioid restrictions negatively affect chronic pain patients. She offers one story about a colleague explaining to her that responsible use of opioids allows her to work and remain part of society and how restrictions could remove necessary treatments she needs to be a part of the world. Outside this very small section, she dismisses the lack of pain management as a valid problem- especially for women and people of color who are notoriously disbelieved by doctors which has even lead to their deaths. She chalks it up to a lie and a "big pharma" talking point. While predatory pharma salespeople definitely latched onto the technique as something they could use to sell drugs, that does not mean it was not a serious problem. To offer another anecdote, a friend of mine had to have a hip replaced multiple times due to likely malpractice. The pain of course increased each surgery and on DAY ONE a nurse yelled at her for asking for her pain meds, "YOU'RE GOING TO GET ADDICTED TO THESE!" Her bone had been sawed in half and replaced with metal for the third time and all this nurse could do was label her drug seeking for trying to manage her pain. Pain management is also critical for surgery and anesthesia recovery as unmanaged pain causes excess stress on the system and prevents patients doing important things like getting up and moving around as soon as possible after many surgeries. Do some doctors over-prescribe? Absolutely, and that needs to be better handled. Yet, the fear mongering that pain on the whole is over-managed is a blatant falsehood. This leads to my next point. Inclusion of more science would have helped her greatly with these points.

Macy's handling of race in this book is not very good. She does mention multiple times how white suburban people becoming addicts is what people give attention to, unlike the crack epidemics that were treated with criminalization alone. Then she refers to white, suburban people as "unlikely" addicts, creating a racist and classist dichotomy that is also false as addiction has always been present in all communities for the most part. All of her human interest stories are white people and the only Black person heavily focused on is a dealer. She, again, tries to highlight the injustices in our system that force people back into dealing in order to survive, but then later falls short when she seems to suggest that dealers are solely responsible for addiction in the suburbs. The most egregious mishandling of race in the book, though, is when she discusses the doctors being less likely to believe and to treat Black people's pain. As I mentioned in the previous paragraph, it is well documented that Black people, women, and especially Black women are disbelieved in medical situations. Black people especially are often seen to have a higher pain tolerance even though studies show it is actually lower on average likely due to stress and going untreated. This is residual from slavery times when surgeons experimented on enslaved Black women with no anesthesia claiming they feel no pain. She had the audacity to suggest that this had protected Black people from opioid addiction, turning it into a one-dimensional issue with a great outcome, rather than something that literally kills Black people in hospitals. The aforementioned scare mongering that opioids automatically turn everyone into an addict mixed with other kinds of oppression is a injurious and sometimes deadly combination.

As a result of these issues, I have mixed feelings about this book being so popular. I am not sure if I want people to read this book so they will care about addicts and take things more seriously, or if I want them to avoid it due to it's lack of nuance on several issues and misinformation on others. I hope people who do read it will see Macy as one voice of many on the issue who don't all agree.

This review was also posted to my goodreads.

Book Review: This Chair Rocks - A Manifesto Against Ageism

 Image: the cover of the book is a black background with yellow and red lines shaped like very elongated teardrops jut out from the center. In the center, in capital white letters is "This Chair Rocks" followed by a white line under which "a manifesto of ageism" is in yellow capital letters. At the bootom of the book is the author's name, Ashton Applewhite, in smaller white letters.

I had extremely high hopes for Ashton Applewhite's This Chair Rocks. I try to remain up to speed on how to fight oppression in general, but ageism is definitely something I could stand to learn more about. As a 36 year old, I am able to escape (for now) a lot of the ageism that older and younger people face. Thus, I want to know what part I can play in combating ageism. The book did not completely fail in giving me some ideas and teaching me to think differently here or there, but overall an extremely important topic ended up completely drowning in the author's unchecked white-centrism and lack of understanding and experience of oppressions other than ageism and (white) womanhood. I am white, so I am sure there are even more things I will miss in this review. This is normally a book I would have considered putting down, but I wanted to make sure I experienced the whole thing to give a much needed comprehensive review since it a new edition is due out. This is especially important given Applewhite's reach and appeal to wider (I would guess predominantly white) audiences.

There are some things Applewhite does well with this book, so I will begin with those. I felt the writing style itself was fairly accessible. She does attempt to mention how other oppressions are connected to ableism (albeit failing much of the time, which I discuss more later.) I found her discussion of alzheimer's and other forms of dementia to be important and challenged the way I thought about these disorders and the ways people live with them. The sections on sex and dating were ok, dispelling myths that older people somehow shut down in these areas after a certain age. Applewhite is very passionate about the subject and is charting territory in ways that are not as well charted as some other struggles, so props to her for that. Unfortunately, the good things I have to say about this book end there.

One glaringly problematic detail about this book is how she tackles ageism as something only affecting older people. This was a missed opportunity to get deeply into the ways that ageism affects youth and as a result, leads to some faulty conclusions on her part. One example was her stating that people care less or attend less to older people when they have health problems, stemming from the "they're going to die anyways," sentence forced upon people. This is true, but she juxtaposed it with suggestions that younger people are taken more seriously and cared about more when they become sick which I can assure you is not true in many cases. As a person who had to go through the whole social security disability process in their 30s, the belief that I am too young to be sick and whatnot has tainted my experiences. These kinds of ageism stem from the same root and could have made such a better argument if analyzed together. There are many other examples where Applewhite missed an opportunity to discuss the spectrum of ageism and limited herself and her argument to "olders." There are ways to discuss the parts of youth that are valued in US American culture without ignoring that youth, especially those under 18, also face ageism. It is not that she never mentions younger people, but I can probably count on both hands the number of sentences in the entire book that included them.

The next thing that needs to be discussed is the thing that bothered me most about reading this book. Applewhite regularly mentions other oppressions and "intersectionality" throughout her book. But, her lack of understanding of them and of how intersectionality actually works caused her efforts to to be tokenizing at best. She does occasionally mention that marginalized older people do struggle more, but it is rare and in passing, overall making the image of the person suffering ageism to be a white older person. This was especially evident in the common white, liberal, single-issue activism mistake of repeating something to the tune of "we no longer tolerate racism, sexism, or homophobia but we still tolerate ageism." It left me wondering just how sheltered Applewhite is if she is so comfortable suggesting these oppressions are somehow over. This gets even worse when she starts making insulting comparisons that not only create a binary of white older person or Black/gay/disabled/etc other person, but are downright bothersome I am sure even to people who aren't as immersed in leftist lingo as I am. Granted, some of these things are quotes from others, but quotes she celebrates and cosigns.

Some examples of tokenism and ignorance are her celebration of the phrase "when you become old you become black," her comparison of US American slavery to modern day ageist discrimination in the workplace, her honoring of her husband confronting a bouncer for calling him grandpa for saying in response something like "that would be similar to me calling you the n-word," claiming she wants (cisgender heterosexual) older people to consider adopting the term "age queer," comparisons between disability justice and the fight against ageism while littering the book with casual ableism (more on this in the next paragraph,) the use of the words "women and blacks" and a possibly unintentional suggestion that the "women's movement" could not be both, and other examples. Basically, Applewhite seems to care more about tokenizing oppressions she does not suffer for her thesis than she does actually understanding and fighting these oppressions. This is something I do think she cares about though and could definitely grow on, but the book has been out for years and I am reviewing the newest edition that came out in March. Thus, it still mirrors many of the issues found when white liberal cis women lead a conversation. This means someone looking at the current state of the USA with neo-nazis marching the streets, mass deportations, the executions of Black, Brown and Indigenous people in the street by police, the banning of trans people from various things, a vice president who supports gay conversion therapy, and so on and claim that racism and homophobia are no longer acceptable, but ageism is. It was infuriating that it happened over and over.

Next I want to focus specifically on disability because of how intertwined it is with ageing. This book is full of casual and some not-so-casual ableism. The most frequent kind is the need to focus on the "productive" older people and to dispel myths that older people are a drain on society rather than fighting against the idea that one must be capitalistically productive or active for one to have worth at all. There are times she almost goes there but then draws back. I think it is perfectly acceptable to highlight the diversity of peoples needs and abilities throughout ageing. I think this was executed badly in this book. With how much Applewhite brings up ableism, I was hoping she would have had a better hold on the core tenets of ableist oppression. Many other oppressions are in some way rooted in ableism, especially ageism. I wish she would have done a better job attacking the idea that for us to matter we must be productive, active, fit, etc. There was also a section about chronic pain that was one of the worst in the book. Strangely enough, it followed a section about how important it is for older people not to be isolated. She celebrates a woman who claims that she will walk out of the room if her friends mention any health problems they are having, because she wants to hear "about their life" instead. Applewhite goes on to say no one, except maybe your mom, wants to hear about your ailments. This is once again placing abled older people in the worthier position and requires that unhealthy disabled/chronically ill people in general lie when asked the age old question, "How are you?" in order to avoid making abled people feel uncomfortable. One can make a point that ageing doesn't always involve suffering without stomping on those who are suffering. I can't think of anything more isolating than knowing a friend would walk out of the room if you confided to her that you had just been diagnosed with metastatic cancer or that you need a knee replacement. Applewhite further goes on to talk about how physical therapy "fixed" her and her daughter's pain and made other statements consistent with someone who does not understand what it is like to deal with severe chronic pain that can't be fixed- something common in many of the most isolated disabled and/or older people.

These and other examples made me often ask myself, "Did Applewhite read her own book before sending it to be published?" She contradicts herself so often that I sometimes struggle to know what she believes. The conclusion of the book does offer some decent suggestions for combating ageism, both internalized and externalized. The book isn't 100% bad. But, it is so clouded with problems and limitations that I cannot recommend it as a worthwhile read. I wish I had something I could suggest in it's place instead.

This was also posted to my goodreads.