tw: psychiatry

If physical diseases were treated like mental illness. 

Studying psychiatry this semester cleared a lot of my questions and changed a lot of my ‘taboos’ in regard to mental illnesses. I think this comic is great way to raise awareness. Sadly, mental illnesses are vastly misunderstood by the general public, including a huge portion of the medical community. It’s a shame, although not surprising. Psychiatry and the neurosciences are relatively new sciences. 

Thankfully, there is plenty of people working on uncovering the secrets of the brain, let’s hope we can change this little by little and broaden people’s minds. 

Let’s promote acceptance, assistance and understanding. This is what I hope for. 

Mad History/Mental Illness History Reading Masterpost

I was recently asked to give some sources on mad history, or the history of mental illness as it affected those living with it (ie, focused less on psychiatry and more on the people living under psychiatry).  Here’s the short list I came up with.  Most of these books have been read personally by me, but some of them I’ve read ages ago or only in part, so I can’t 100% vouch for all of them.  In addition, please keep in mind that many of these books deal with triggering topics such as ableism, institutionalization, eugenics, and medical abuse.  I have provided some trigger warnings, but they are by no means extensive.

There are some other issues to keep in mind: these books are all based in Western countries and history, and there’s often very little mention of intersectionality, this goes extra for the history books since they don’t have the same reach as the first person sources.  

Also, all memoirs and first person sources go back at minimum several decades since the purpose is providing  history.  It’s good to remember that there’s often different context, for example, much of the psychiatric survivor literature from the 60s and 70s focuses on overmedication and medicating without consent, but modern activists often focus more on access to affordable medication (although the former are still unfortunately problems.

Please feel free to add more books in reblogs or via asks!

FIRST PERSON SOURCES: 

Circle of Madness: On Being Insane and Institutionalized in America, Robert Perrucci, 1974. A 1970s guide to the psychiatric system from the inside out, written by someone formally institutionalized as both a guide to the system and as a way of exposing it to non-psychiatric patients.


From Madness to Mental Health: Psychiatric Disorder and Its Treatment in Western Civilization, Edited by Greg Eghigian, 2010. Compilation on first person sources on mental illness and mental health ranging from 960 BCE to 1990. Be warned the font is unsual and it may be difficult to read for some people, unfortunately.


A Mad Person’s History of Madness, Edited by Dale Peterson, 1982. Another collection of first person sources with a focus on those by people mentally ill. Sources date from 1436 to 1976.


Shrink Resistant: The Struggle Against Psychiatry in Canada, Bonnie Burstow & Don Weitz, 1988. A collection of anti-psychiatry writing by Canadians who experienced the psychiatric system from the inside.


Madness, Heresy, and the Rumour of Angels: The Revolt Against the Mental Health System, Seth Farber, 1993. An collection of anti-psychiatry interviews with those who’ve experienced the psychiatric system firsthand.


Screw: A Guard’s View of Bridgewater State Hospital, Tom Ryan & Bob Casey, 1981. An inside few of the American forensic hospital Bridgewater State from 1972-1975, the same hospital exposed in the famous documentary Titticut Follies. Huge trigger warning for abuse of all kinds and racism.


Cold Storage, Wendell Rawls Jr, 1980. An expose of Pennsylvania’s Farview State Hospital for the Criminally Insane, written by a journalist and based on over 200 interviews conducted with inmates and guards. Huge trigger warning for abuse of all kinds and racism.

HISTORY BOOKS:

Keeping America Sane: Psychiatry and Eugenics in the United States and Canada 1880-1940, Ian Robert Dowbiggin, 1997.  A history of the relationship between psychiatry and eugenics.


The Quest for Mental Health: A Tale of Science, Medicine, Scandal, Sorrow, and Mass Society, Ian Robert Dowbiggin, 2011.  A more critical history of psychiatry and treatment for mental illness.


Remembrance of Patients Past: Patient Life at the Toronto Hospital for the Insane, 1870-1940, Geoffrey Reaume, 2009. Geoffrey Reaume is a historian with schizophrenia who set out specifically to record the history of the lives of patients institutionalized and dealing with the psychiatric system, and this book is explicitly written in a mad history/studies context.


Gracefully Insane: Life and Death Inside America’s Premier Mental Hospital, Alex Baem, 2001. A history of the most exclusive psychiatric hospital in the United States, this book follows from its inception as a public hospital in 1816 until the modern day. This book has extensive coverage of what mental health care looked like for the most privileged in society for the last two decades, and was also the same hospital attended by Susanna Kaysen of Girl, Interrupted fame in the 1960s.


A History of Psychiatry: From the Era of the Asylum to the Age of Prozac, Edward Shorter, 1997. This text is less critical of psychiatry than most on here but still provides a definitive and scholarly history of mental illness under the purview of psychiatry in the western world.


Madness in America: Cultural and Medical Perceptions of Mental Illness before 1914, Lynn Gamwell & Nancy Tomes, 1995. Excellent book on psychiatry before psychiatry was fully established as a discipline. Contains many historical illustrations, paintings, and photographs, some of which may be upsetting or triggering in their treatment of the mentally ill.


The Lives They Left Behind: Suitcases from a State Hospital Attic, Darby Penney & Peter Stastny, 2008. I haven’t read this one personally yet, so I can’t give as much information, but it’s a history of Willard State and the people who lived their told through the suitcases left behind when the hospital was abandoned and closed in 1995.


Crazy in America: The Hidden Tragedy of our Criminalized Mentally Ill, Mary Beth Pfeiffer, 2007. This book focuses on a more modern era (mostly the last two decades) but I included it because I think it’s an incredibly important critique of the ways in which mental illness intersects with the American so-called criminal justice system. It also serves as a followup to Screw and Cold Storage.


The Protest Psychosis: How Schizophrenia Became a Black Disease, Jonathan Metzl, 2011.  Metzl covers the ways in which racism intersects with perception of mental illness, particularly for Black Americans during the civil rights movement and the ways in which schizophrenia diagnoses were used to discredit them.


America’s Care of the Mentally Ill: A Photographic History, William E. Baxter & David W. Hathcox, 1994. This hard to find book (I suggest checking university libraries) has hundreds of photographs and illustrations of American psychiatry and institutions dating from the 18th century to mid-20th.


The Shame of the States, Albert Deutsch, 1948. The classic expose of the terrible conditions in American psychiatric hospitals in the mid 20th century. Very hard to find, again, I suggest checking universities, that’s where I managed to read it.  


The Mentally Ill in America: A History of their Care and Treatment from Colonial Times, Albert Deutsch, 1937.  Lesser known book by Deutsch on the early history of psychiatry in the United States. Worth checking out for the amount of detail seldom given in modern books, and for the early example of criticism against psychiatry.

MEMOIRS:

Girl, Interrrupted, Susanna Kaysen, 1993. One of the most famous books about mental illness. Covers the author’s several years in the most expensive psychiatric hospital in America, McLean Hospital, during the 1960s. Worth reading, but also keep in mind that as a wealthy and white Senator’s daughter the author was in an extremely privileged position compared to other patients in the psychiatric system.


The Last Time I Wore a Dress, Dylan Scholinski (published under Daphne Scholinski), 1997. Memoir of a teenager in the 1980s who spent several years in psychiatric hospitals treated for gender identity disorder. TW for transphobia, homophobia, and misogyny.


I Never Promised You a Rose Garden, Hannah Green/Joanne Greenberg, 1964. A classic, Rose Garden isn’t technically a memoir, but it is heavily based on Joanne Greenberg’s lived experience and stay in a psychiatric hospital in the 1940s. The novel also tackles anti-semitism and the stress of physical disease, and was published both under Hannah Green originally (a pseudonym) and then later Joanne Greenburg.


Nobody’s Child, Marie Balter & Richard Katz, 1991. A memoir of an adopted woman who spends the first who decades of her life in psychiatric hospitals dealing with severe anxiety and depression.


Life Inside, Mindy Lewis, 2002. Memoir of a teenager sent to a psychiatric hospital by court order in 1967 for skipping school and smoking pot.


Only for a Fortnight: My Life in a Locked Ward, Sue Reed, 1989. Memoir of a 12 year old sent to live in an adult psychiatric ward. Sue Reed remained there for 5 ½ years before being released. TW for csa/rape and abuse.


My Lobotomy, Howard Dully & Charles Fleming, 2007. Howard Dully was one of the youngest people to have a lobotomy at the age of 12 in 1967. It was performed by the famed Walter Freeman, who popularized the lobotomy in the 30s and through the 60s til his last, disgraced, in 1967. My Lobotomy tells of Dully’s experiences with Freeman, his later time in a variety of institutions, and his feelings looking back as a middle-aged man.


The Dark Threads: A Psychiatric Survivor’s Story, Jean Davison, 2009. The other book on this list I’ve not read, and another memoir of a teenager instituationalized in the psychiatric system of the 1960s and 1970s.

Decrease, that’s Dr. R. alright…
— 

-a nurse at a mental institution I was in

Dr. R. knew what it was like to have to live most of your life on medication.  He didn’t feel quite like himself on his ADD meds. And he badly needed them in order to work at his job. Even with the meds his secretary had to work harder than most secretaries to accommodate him. Off his meds he literally could not complete a full sentence because his mind and interest raced from one topic to another so fast his mouth couldn’t keep up.  So he took “medication holidays” most weekend where he wouldn’t have to have many responsibilities that required concentration.  And his ADD was more severe than that of most people I met, so it wasn’t just a case of “I could function without my Ritalin, I just choose to take it or not on a whim.”  He could not function without it, he needed constant assistance from others without it.  And yet he still chose not to take it some days, because he found that he felt like too much of a different person on the meds, a person he couldn’t fully recognize or identify with.

As a result, he preferred to give his patients as little medication as he could get away with.  As in, the bare minimum to help the person function, and if it was not helping the function and he knew it, he would taper them off it altogether.

The nurses and psychiatric technicians who hung out behind the nurses station and gossiped constantly (but who suddenly were “busy charting” if a patient needed help)… I spent a lot of time in isolation rooms that had a door opening into the nurse’s stations.  And the nurses and psych techs loved to use neuroleptics (a.k.a. antipsychotics, major tranquilizers) and minor tranquilizers (a.k.a. sedatives, hypnotics, etc. stuff like Ativan/lorazepam) in order to incapacitate patients and make us easier to manage.  So one day, when I was tied down an isolation room just behind the nurse’s station, I heard them talking about Dr. R.’s decision to decrease one of my medications.  

Dr. R. had noticed, and written in his admission and discharge summaries, it went something like… “We’ve found that the amount of  medication required to control Amanda’s destructive behavior is uncomfortably close to, and sometimes exceeds, the amount of medication that renders her completely incapacitated.”  Well, yeah.  Neuroleptics work to control behavior.  And they are now and have been for at least ten years, been recommended for autistic people’s aggressive behavior towards ourselves or other people.  Eventually getting to the point where some doctors only know they’re prescribed “for autism” and prescribe them to all their autistic patients, which is horribly irresponsible.  Anyway, neuroleptics work to control autistic people’s behavior – and other people’s behavior.  They’re rampant in the developmental disability world for auties, people with intellectual disabilities, people with cerebral palsy, people with severe multiple handicaps, etc.  

And they work to control our behavior by disrupting the links between thinking and acting.  A person on neuroleptics may look tranquil, hence the word ‘tranquilizer’.  But on the inside, we may feel lost, confused, as if our mind has been scattered to the winds and we can’t find all the pieces and put them back together again, agitated, restless, furious, terrified, all these things at once.  But it won’t show on our face or body unless we get the side-effect of akathisia.  But so few people know about akathisia (severe restlessness that can escalate to violence) that they’ll take the akathisia as a reason to give more of the drugs that are causing it in the first place.  

Akathisia can become permanent, too – it’s a myth that tardive dyskinesia is the only permanent side-effect of neuroleptics.  (“Tardive” basically means symptoms that appear slowly rather than all at once.  The tardive movement and cognitive syndromes that can occur in neuroleptics are often permanent, even if you remove the drug.  There’s also acute versions of the same conditions, that do go away when you remove the drug.  Acute akathisia vs. tardive akathisia, for instance.)  The tardive syndromes I’m most aware of include:

  • Tardive dyskinesia, which can range from a slight involuntary movement at the edges of the tongue, to full-body contortions that are so severe they can inhibit breathing and kill people.
  • Tardive akathisia. That same psychological and motor restlessness, only it doesn’t go away once you stop the drug.
  • Tardive dystonia.  Any form of dystonia (a movement disorder, I’m too tired to Google it and give you information) that remains permanently after the drug has been discontinued.
  • Tardrive dementia.  Cognitive impairment that does not go away after the drug has been discontinued.

When I say “does not go away”, I don’t just mean the first year of being off of these drugs.  I mean that it doesn’t go away pretty much ever.  It may improve to an extent going off the drugs, but then plateau and stay at the same level.  It may actually get worse going off the drugs, because some of the drugs have effects that mask the full extent of the tardive dyskinesia or other tardive syndrome.

And did I mention that neuroleptics are generally a bad idea for autistic people with catatonia?  Yeah.  Not that they knew that when they were busy loading me full of thee drugs.  Because there were only two papers out on autistic catatonia at the time, and it didn’t even have the name autistic catatonia yet.  The first article that wasn’t a case study, came out about a year after I stopped neuroleptics.  But it explained why (I didn’t notice this, but my whole family did, so it must be real) the moment I went on neuroleptics – not even long-term, just my first dose of Thorazine  and Haldol for behavior control in a (different from the above) mental institution.  The moment I took them apparently my motor skills took a nosedive they’ve never recovered from.  It was like they accelerated the progression of the autistic catatonia.

I know someone else with autistic catatonia.  They were on Mellaril throughout a lot of their childhood.  It was only after someone decided to take them off of it, that they learned to use speech for communication.  They were twelve years old at the time.  In my case, I began showing obvious symptoms of autistic catatonia (not “catatonic traits that exist in all autistic people”, but actual deterioration of my motor and speech abilities) at the age of 11 or 12.  I was first given neuroleptics at the age of fourteen.  Which made me lose skills much faster.  When I went off of them at age nineteen, I had a period where everything got much, much worse, and then a gradual period of things getting better, and then I went back to my previous pattern of one step forward and three steps back, when it came to losing motor planning skills.

Anyway, I just remembered the scorn heaped on Dr. R. by the nurses, because he made it very difficult for them to use chemical restraints for their own convenience.  Shortly after this happened, they resorted to deliberately escalating situations – such as grabbing me and hauling me to the isolation room for no reason at all, with no warning at all – and if I struggled, at all, then I was a danger to others and it was okay for them to tie me down and drug me.  Dr. R. was not happy about this, so he assigned me and another patient who was getting treated similarly, a one-to-one aide from Visiting Nurses, who could take notice of anything the institution staff were doing to control me.  One day one of those aides saved my life, but that’s a long and traumatic story I have no interest in rehashing at the moment.

Suffice to say, for Dr. R.'s patients, “Decrease , that’s Dr. R…” was a good thing.  He didn’t always succeed, and he had all the dangerous biases that decades working as a psychiatrist would give a person.  But he tried.  He tried to give the smallest amount of a medication he could, that would still work, and he’d work with you on “drug holidays” if that’s what you and he felt you needed.  So despite his shortcomings – ones he shared with most in his profession, unfortunately – he was still the best psychiatrist I ever ran into.  It wasn’t just the ADD either – he grew up with a speech impediment and social problems, and he had attempted suicide at least once as a teen.  When he heard about the autistic community’s use of the word “cousins” (people who are not autistic but share many autistic traits, especially perceptual or social traits), he said he was a cousin.

And he’s the one who helped me get off my psych drugs in the end – all of them.  It was harrowing, even tapering slowly.  But we both acknowledged it had become a “the old lady who swallowed the fly” situation – most of the drugs were to treat side-effects of other drugs.  In psychiatry there’s an unfortunate tendency to look at side-effects as “this always existed and the drug just unmasked it”.  Like… my neurologist gave me a migraine drug once, Topamax, that changed my personality in a very severe way.  And when my friends told him what was going on, he just said “Discontinue it, immediately.”  Within psychiatry, those personality changes would’ve been said to be an underlying psychiatric condition that the Topamax unmasked, and I’d be given drugs to “treat” that condition, which would then “unmask” more conditions I didn’t really have, and so on.  So he helped me get off of everything.  He believed in me even when people were saying the withdrawal symptoms were proof I belonged on the drugs after all.  He stuck with me the entire year it took for me to get back to what was now normal to me.  He continued to make some major mistakes, but now that I was a legal adult and off of my meds enough to think clearly, I was able to get away from those mistakes in a way I hadn’t been able to as a child.

I never became the next Temple Grandin, which is what he wanted me to be.  But I think if he’s still around (he was old and had a heart condition, so he may well be dead), he’d be proud of what I’ve accomplished in self-advocacy and research alike.  And he’d be glad that my physical problems were finally being diagnosed for what they were – he’d early on had to help me fend off doctors who believed my physical problems were psychiatric in nature just because I had a developmental disability and a long psych history filled with diagnoses and misdiagnoses.  I hope he got a chance to watch at least some of that unfold.  I lost touch with him after he retired.

Anyway… I’m still proud of him for decreasing my meds and helping me get off of them, and believing in my ability to get off of them, even in the face of overwhelming pressure to do the opposite and have me so sedated (actually, at that point, twice the toxic dose of a neuroleptic, plus another neuroleptic on top of it) that I was falling asleep everywhere and having atonic or myoclonic seizures every few minutes when I was awake.

I’ve always been ambivalent about him – he seemed like a character in a book who is good but has a tragic flaw – but in this area, I am absolutely happy with the majority of decisions he made.  The majority, mind you.  But that’s more than I can say for any other psychiatrist I’ve ever had.  I really lucked out, because he was rarely on duty, and the night I came in I was assigned to him because he was on duty that night.  He instantly figured out that I was autistic (even though I was there for suicidal behavior), he saw me as something akin to an “idiot savant” (his words, not mine), and he developed a strong bond with both me and my family that carried us through some of the worst bullshit we encountered in the system.  Which was good because, as my mother pointed out, my parents were never educated in how to deal with an autistic teen with a seemingly sudden explosion  of neurologic and psychiatric problems.  And he decreased my meds when possible.

You wonder how a system so sophisticated, so technologically advanced, can treat people with such cruelty. Of course, it is not the system at all. It is one doctor, two nurses, an aide, or an orderly. It is people who lock people into seclusion rooms, and it is people who affix the leather cuffs or the chains or the gauze strips. It is people who do this and who do not have the courage to confront the unimaginable. It is people who believe they must do what they must do and that what they must do is the expedient thing. It is people who justify torture. “We’re only trying to help. We don’t know what else to do,” they say, with their refrigerated voices.

Does it really matter what else you do? Or is it enough to acknowledge evil, which is indifference to suffering and indifference to the sacredness of the human person? The only way to fight evil is to unmask it, to speak up, to refuse to participate in it, to not be indifferent.

But to us, the hostages of evil, the feeling of endless time is crushing. For us, even when the door is opened, the restraints loosened, we remain captives. We can never forget.

—  Rae Unzicker, “From The Inside”
What does a feminist therapist do that’s different? A feminist therapist tries to believe what women say. Given the history of psychiatry and psychoanalysis, this alone is a radical act. When a woman begins to remember being sexually molested as a child, a feminist does not conclude that the woman’s flashbacks or hysteria prove that she’s lying or crazy.
A feminist therapist believes that a woman needs to be told that she’s not crazy; that it’s normal to feel sad or angry about being overworked, underpaid, underloved; that it’s healthy to harbor fantasies of running away when the needs of others (aging parents, needy husbands, demanding children) threaten to overwhelm her.
A feminist therapist believes that women need to hear that men “don’t love enough” before they’re told that women “love too much”, that fathers are equally responsible for their children’s problems; that no one - not even self-appointed feminist saviors - can rescue a woman but herself; that self-love is the basis for love of others; that it’s hard to break free of patriarchy; that the struggle to do so is both miraculous and life-long; that very few of us know how to support women in flight from - or at war with - internalized self-hatred.
A feminist therapist tries to listen to women respectfully, rather than in a superior or contemptuous way. A feminist therapist does not minimize the extent to which a woman has been wounded. Nevertheless, a feminist therapist remains resolutely optimistic. No woman, no matter how wounded she may be, is beyond the reach of human community and compassion.
A feminist therapist does not label a woman as mentally ill because she expresses strong emotions or is at odds with her feminine role. Feminists do not view women as mentally ill when they engage in sexual, reproductive, economic, or intellectual activities outside of marriage. They do not pathologize women who have full-time careers, are lesbians, refuse to marry, commit adultery, want divorces, choose to be celibate, have abortions, use birth control, choose to have a child out of wedlock, choose to breast-feed against expert advice, or expect men to be responsible for 50 percent of the child care and housework. Women have lost custody of their children for these very reasons - pronounced unfit by courtroom psychiatrists, psychologists, or social workers.
—  Phyllis Chesler, “Womand and Madness - Revised and updated for the first time in thirty years”, 2005, pp. 30-1.