When Willard State Hospital closed its doors in 1995, after operating as one of New York State’s largest mental institutions for over 120 years, a forgotten attic filled with suitcases belonging to former patients was discovered. Using the possessions found in these suitcases along with institutional records and doctors’ notes from patient sessions, Darby Penney, a leading advocate of patients’ rights, and Peter Stastny, a psychiatrist and documentary filmmaker, were able to reconstruct the lives of ten patients who resided at Willard during the first half of the twentieth century.
The Lives They Left Behind tells their story. In addition to these human portraits, the book contains over 100 photographs as well as valuable historical background on how this state-funded institution operated. As it restores the humanity of the individuals it so poignantly evokes, The Lives They Left Behind reveals the vast historical inadequacies of a psychiatric system that has yet to heal itself.
3.5 Willard, a state institution in upstate New York was part of the self sufficient institutions that sparing up in the late 1800's. They existed by using patient labor to supply all their own needs. Once patient labor became illegal these huge institutions closed one by one. Over five hundred suitcases were left in the attic of Willard, possessions left by former patients and that is how this story came to be.
The author provides and overview of Willard, state institutions in general , what brought patients here, how psychiatric services were at the time, dismal and often cruel. Many entered and few left, either they died or the stayed until they were old. The longest I think was seventy five years. Few knew these people, few had visitors and most of them died totally unknown.
Sad, depressing it took very little to be committed, many situational sadness but even when well were not released, and in truth many has nowhere to go of they were. The suitcases and the lives investigated in a random selection at least made a few of these unfortunates known. We learn about their lives, what bought them here, what they were diagnosed with and their ending fates. We learn their names, these invisible souls who existed but died leaving little trace that they had ever been here. Incredible.
At the end the author asks if things are better now? I have my own opinions as I am sure many do. We do have better treatments, drugs, but still so little is about the human mind and so much of psychiatry is a try and observe type of scenario. Stigma still attached to mental illness is sometimes fierce. But I am glad to have read this, to at least know in a little way some of the unknown.
This book had such potential. Willard was a state psychiatric hospital in the Finger Lakes region of New York that only recently closed. The suitcases of people who died or left without family were catalogued and studied in hopes of learning more about their owners - especially to try to gain insight into the lives they led prior to their psychiatric admission. Last names were changed to protect privacy - except if one looks at the multiple pictures included, several actual names can be seen. So much for valuing patient rights and privacy, as the authors purport to do. The book also looks to expose the abuses of the psychiatric system - both historical and recent. I think the former is done with much more success than the latter. Although the authors attempt to raise questions about the modern psychiatric system, as someone who has worked within the psychiatric system, I can't help but feel that while the system is far, FAR from perfect, the book unfairly vilifies it almost to a point of irresponsibility: Suggesting that modern anti-psychotics have nearly no proven benefits goes against everything I have seen first-hand, as well as what I have heard from both families of people with mental illness AND those living with mental illness. Are the meds perfect? No! But to suggest there is NO proven benefit makes me question what sources they are using. I feel if they had focused more on the historical abuses, this book would have been much stronger.
An MSW colleague of mine lent me this. Here is my note to her after I started reading it.
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Dear _______,
I read the book you lent me about suitcases in an asylum’s attic, or at least I read about half of it. Unfortunately that was all I could stand. In case you are considering lending the book to others, especially students, I would like to share my thoughts on the book.
The authors have a stridently anti-psychiatry worldview, and do not admit their own biases. To give one example, after going on for pages about how the hospital was warehousing this guy against his will, they admit the hospital had repeatedly offered to place him out for over a decade and he had continually refused. Another example is saying that none of the patients had tried to kill themselves or others, but even in the stories I read there were patients who struck out at others, had the cops called for threats they made, etc., and they admit one person did try to starve himself. The authors do admit in one spot that there is inherent selection bias in choosing as they did to look at people whose luggage was left there—e.g. it selects for those without families, those who stayed until they died, etc.—but do not appreciate in the rest of the book that this bias could explain a lot of the things that they point out as recurrent themes in these patients. There are a lot of similar examples that I’m not quoting here, but I can bring in my notes if you’re interested.
More importantly, there are numerous factual errors, like saying that there is no evidence that antipsychotics reduce emotional symptoms in people with schizophrenia. That’s just silly—there are many dozens of randomized controlled trials that prove that very point. The authors appear to assume that if one would just talk to the patients, they would get better. They supply no details of how this would be done, and no evidence for the effectiveness of this approach, yet it seems this is one of their main complaints about how the patients were treated. Ironically this also directs attention away from the non-medication intervention that is most proven to work in schizophrenia: family education.
Plus there are repeated insinuations that psychiatrists are motivated mostly by greed and ignorance and paternalism. I’m sure this describes some psychiatrists some of the time, and it does appear that mistakes were made in the care of some of these patients and that some of them could have been sent home (if they had a home). But it is not only factually wrong but also mean-spirited to assume that’s always what is going on. This is frequently accompanied by “scare quotes,” like saying that hospitals wouldn’t release names of patients at their death ‘due to “confidentiality” concerns.’ Additionally, the authors are upset that patients seemed to get no useful treatment, but the book covers only the first half of the 20th Century, and in fact there were no useful treatments for schizophrenia at that point in time, and only one really useful treatment for major depression, and that after about the 30's. The repeated implication is that patients still get no useful treatments today. Similar comments could be made about the authors’ description of unmodified ECT, which hasn’t been used in America for decades now.
Finally the authors endorse some really wacky, out-there stuff, like saying explicitly that hallucinations are to be welcomed not treated. The book repeatedly implies that the patients’ symptoms—which, when described, are often quite serious—would not really be a problem for the patients if the psychiatrists would just stay out of the way.
The stories are actually interesting, and the authors obviously invested a lot of work in researching the patients’ lives, so it is a shame that the book is full of dangerous misinformation and hateful innuendo.
Thanks, Kevin
Sunday, January 04, 2009 1:08 AM Kevin Black wrote:
About my comment that there were no effective treatments in the early 1900s . . . it's not quite accurate, though it is true that the first effective specific treatment for schizophrenia was not discovered until the late 1950's. Actually, leaving aside belladonna, opium, magnesium salts, and other naturally occurring pharmaceuticals, chloral hydrate was synthesized as early as 1869. Apomorphine was synthesized in the same year and soon thereafter was tried as a treatment for schizophrenia (marketed today in the U.S. for treating Parkinson disease; it has no pharmacologic similarity to morphine despite the name). Barbiturates were first sold for medical use in 1903-1904. The psychiatrist Wagner von Jauregg received the Nobel Prize for physiology or medicine in 1927 for his fever therapy for neurosyphilis--actually giving people malaria on purpose to provoke bouts of fever, then giving quinine to kill off the malaria. (That may sound nuts now, but if you read the Nobel speeches, available online, quantitative response data were available, and at the time this was dramatically more effective than previously available therapy for this [then] major cause of psychiatric illness. Still, his public health work with iodine therapy for dementia due to dietary hypothyroidism is generally felt to be a more long-lasting contribution.) ECT (for schizophrenia), lithium salts (for mania) and amphetamine (for what we now call ADHD) were all introduced in about 1937. They are all still important mainstays of treatment, though ECT's efficacy for schizophrenia is quite limited and it is now used primarily for treating mood disorders. It is still the most effective known treatment for major depression.
“The Lives They Left Behind: Suitcases From a State Hospital Attic.” Darby Penny, Peter Stastny, Lisa Rinzler, Robert Whitaker.
When Willard State Hospital closed in 1995, after 125 years of continuous operation, 427 patient suitcases, filled with each patient’s personal belonging, were discovered, abandoned, in an attic. This interesting book attempts to bring to light the personal stories of the ten patients whose suitcases were found. The authors chose these specific suitcases because there was a plethora of personal notes and materials in each suitcase, that provided the authors with enough data, combined with patient records and charts, to try a reconstruct these people’s lives.
This is a fascinating book about these people’s lives and about the hospital itself.
The “The Willard Asylum for the Insane,” opened in Ovid, New York in 1896. It closed in 1995. 54,000 people were committed to Willard during its 126 years of operation. Most patients stayed at Willard for an average of 30 years. One woman for example, arrived 1899, and died 77 years later in the hospital at the age of 100. Half the patients who entered the facility died there.
Many of the people who were admitted to Willard would not meet the criteria for involuntary hospitalization today. Most were immigrants, who had experienced a series of major stresses in their lives such as the death of a spouse, loss of a job, poverty, homelessness, one woman was regularly beaten by her spouse. There was a nun who left her order and had no where to go. And of course, many patients did have major psychiatric disorders.
Today most of these people, if lucky enough to be able to GET treatment, would receive short term treatment on an outpatient basis, living in board and care home, on their own with case management, or, as quite often occurs, living on the streets with no medication or treatment at all, either because services are unavailable, or patients are non-compliant. Many mentally ill people today, who could be helped by a short stay in a psychiatric hospital, therapy, and medication, are unable to receive these services and end up living on our streets. (Barton, C. 2006).
What makes this book so interesting, is not these grim statistics, but the detective work the writers embark on to tell the stories of these people’s incredible lives. Who were these people who were left behind and forgotten? Where did they come from? Why were they left here for so long? What was their story?
The bulk of the book examines these people lives and answers these questions, and it is a riveting read. You will find yourself drawn into to these people’s lives and experiences, taken back to the times they lived, and you will see their experience through their eyes.
The suitcase project eventually became an exhibit, that traveled around the country and I have included a link for you to look at. It gives you an idea of how interesting and compelling this book is.
The authors, one of whom is a psychiatrist, and another a mental health advocate and journalist, enable the reader to step into these people’s shoes which is a major achievement, and makes for a most interesting read.
This was one of the most frustrating books I've ever read. The authors did a five-star job piecing together the lives of the people whose suitcases of belongings were left behind at Willard Hospital. The book is seriously marred, however, by a strange agenda: the authors seem to deny mental illness exists (except, strangely, for alcoholism and seizures). They want to attribute nearly all mental disorders to situational stressors, and bend over backward to apologize and rationalize away all indications of an actual disorder or illness. In one case, they dismiss a patient's alleged attack on hospital staff by saying that almost all such actions by patients are provoked! In others, they attempt to analyze the symbolism in patients' delusions, digging for granules of possible stretched meaning. Again and again pharmaceuticals are condemned - except in the case of seizure disorders, apparently. Schizophrenic medications are dismissed, with the claim that 5% of the population hears voices, and 2 out of 3 of those does just fine, by learning to "distract" themselves from the voices. Really? 1 in 20 people hears voices and just incorporates it into their daily lives?
I don't know if there's an agenda going on here or what. Over and over again, they hammer at the idea that all patients would be better off with only detailed, individual, in-depth mental assessment - that everyone should be profiled the way they've done with these individuals in the book. (I won't disagree that that treatment would also be a benefit, just not always by itself.)
To be sure, most of the people in this book suffered to some extent from lamentable policies or practices that have since been changed - electroshock without sedation, wet packs, overuse of thorazine, etc. But except in one case - a tubercular nurse with nowhere else to go - I saw no indication that these people were healthy individuals who were railroaded. Even in trying to make excuses for the patients' behavior in the old records, the authors reveal enough that indicated serious problems well before admission to the hospital. The authors would like to believe that these patients were essentially functional and made sick by the institutions. This is not to say there were not wrongful commitments; I just don't think the examples these authors have picked fit that bill.
I am not convinced psychiatry is malevolent or that everyone involved is out to dehumanize and destroy patients. It would be great if everyone at all points of the mental health spectrum could be given a holistic, tailored, and thoroughly personalized approach. If only all patients and potential patients had people like these authors to present their lives in context, we'd all benefit. Peer groups seem to be the best the authors have to offer as a stopgap - helping patients to help themselves through an open, participatory environment. However, until the authors get a grant to spend years making a historical portrait of my life, I'll have to depend on the inexact science of psychiatry as it is.
This is a transfixing and deeply sad book, and its genesis is breathtaking: the discovery of hundreds of suitcases in an attic of the abandoned Willard State Hospital in New York, and taken to the New York State Museum. In "The Lives They Left Behind," the authors reconstruct the lives of ten of those suitcase owners, and not only is their research formidable, but the coherence of these narratives -- even in the face of gaps in the record, or myriad unanswered questions -- is ensured by the great, humane intelligence that underscores this project, which doesn't resort to emotional overstitching, and even when it holds back from wallowing in the more abject details, does so discreetly, never moralizing about our desire to know them. (How could it? Well, a lot of similarly-oriented books make this mistake, and thereby reveal their bad faith.)
One element that does strike me as problematic is the extent to which "The Lives" are shaped around a critique of 20th-century institutional psychiatry. Not that there isn't a ton to criticize (to put it mildly), but occasionally the book overexerts itself in rationalizing the factors that led to these subjects' hospitalization, implying, in most cases, that they were "misunderstood" more than "mentally ill." More plausible is that these are not mutually exclusive categories, and one could argue that minimizing the degree of these subjects' problems -- and the complexity of those problems -- is *part* of the problem that the book is critiquing (i.e., simplistic, uninformed diagnosis).
All of this is undertaken in good faith, though, and it's admirable that the authors act in part as the advocates these patients presumably never had. But the book is at its best when it isn't editorializing about the material, but simply doing what it set out to do, which is to disassemble and re-assemble these abandoned lives, and to make them available to their readers. The pathos of the material needs no commentary; a clear, close, careful look at the evidence -- the bureaucratic records, the subjects' personal effects, which they never saw again after they were admitted -- establishes that these patients were handed a death sentence the moment they entered the doors of Willard State Hospital. When the book moves aside to give us an unobstructed view, what it shows is more than enough.
I expected to really like this book; I thought the premise was fascinating. Unfortunately, what really did it for me was the authors' amateurish psychologizing and endless speculations about the patients' lives, both before they were hospitalized and while they were in the hospital, usually based on almost non-existent records. I had to wonder why they picked the ten individuals they did to write about; were they really the best they could come up with out of over 400 suitcases that were left behind?
I'm not saying that the book was all bad. I did learn a few things I'd never known before about life in a mental hospital from the late 1800's to approximately 1970-something when most mental hospitals were closed down. But even though the authors gave some examples of the abuses and ignorance that characterized psychiatric treatment at that time, they don't go into depth about them. It got to the point where the same things were written over and over again about each patient: they did little to justify being hospitalized, they didn't seem to have severe problems while they were hospitalized, the hospital seemed to just hang on to them for no reason.
It would have been interesting if there had been some kind of comment from the hospital administrators, and maybe there was in the later part of the book, but frankly, I just couldn't slog through it to get there.
Perhaps what bothered me the most was that the patients didn't really come alive for me, despite the detail that the authors took pains to include. It's too bad this wasn't a better book, because it obviously took a lot of research and work to write it, but the authors' own comments got in the way.
The individual narratives of patients lost forever to the asylum-based mental health system are moving & deeply disturbing. But the overall approach by the authors is far too biased to match the stories they're telling.
The book basically contends that its subjects were never really mentally ill, just tossed into Willard State Hospital because they didn't fit within societal norms -- and kept there until death because their labor was essential to the hospital's low-cost survival. Certainly there's some truth to this, but the authors push it so far that it ends up reading more like denial of mental illness as a real medical problem.
Obviously the writers have some serious complaints with America's mental health care system, as they should. But the system's flaws don't mean there's no such thing as insanity.
Thoughtful and empathetic, well written and organized, tells the story behind ten people lost to Willard State Hospital. From an outside perspective with personal effects left in the sanitarium, lost lives are found and memorialized with the care and attention they were denied during the decades they were locked up, many unjustly.
This book was such a disappointment! I was hoping for a factual account of these people’s lives and a look into what it was like in state run hospitals in the early to mid 1900’s. They knew the story they wanted to tell and were not going to let pesky things like facts ruin it. Here is a quick summary of the book. None of these people were really ill, but any problems they did have were misunderstood and could have been easily taken care of without the evil staff at the hospitals. The staffs at the hospitals were cruel and tortured patients and never tried to help them. They kept these poor people prisoners and destroyed their lives. The end.
It was interesting learning about these people, the 10 suitcases that were chosen for this project but I was more interested in the running of the hospitals. I grew up near one of these State Hospitals and it was a fascinating place. I’ve come to learn - recently - that my grandmother (16 at the time), and my grandfather both worked there. The authors delve pretty deeply into the lives of the patients they’ve profiled. Each could certainly have benefited from a more modern approach - though they point out that not much has REALLY changed - though most are now sent out to fend for themselves.
This book was interesting but pretty depressing. I still find it important to share the stories of those institutionalized. I enjoyed the photos of the contents of the suitcases.
This book is just heartbreaking. While second guessing the diagnosis of a patient you have never met is usually questionable, the authors take what records remain extant along with the suitcases holding what personal belongings they contained and piece together life stories that shine a bright light on an ugly era in mental health care. It makes your stomach churn to think about what happened to these people, and you can't help wondering at the motivations of those whose decisions set them or kept them on that path. Some may have been ignorant of neurological matters, but just a little bit of compassion would have almost certainly made the patients' lives better. What an absolute nightmare, to be signed, sealed and delivered into a system that saw anything you did as confirmation of your need for incarceration -- and incarceration is what is was. I understand even better why mental health issues were viewed with such a stigma by previous generations... One did not want to ever touch that label of mental health pathology with a ten foot pole.
Having grown up approximately twenty miles from this hospital for mental patients, I was very pleased when my friend Jan lent me this book a couple weeks ago. It chronicles the lives of several patients who entered this institution in its 126-year history. The case studies are appalling and pathetically sad in their portrayal of these patients' lives through the personal effects found in their suitcases left behind at Willard. The authors paint a very negative picture of the care provided these people who steadily declined in their respective health conditions because of bad diagnoses, overmedication and lack of compassion on the part of their providers. Make no mistake: the men and women who came to Willard spent time in other mental institutions and varied in their level of affluence and intelligent. While written very clinically because they did cover patient case studies, my heart strings were pulled by reading this photo-essay. My friend, Colleen, spent quite a bit of time and talent in an exhaustive study of those mental patients whose graves were lost or destroyed. The Willard cemetery was discussed at several points in this book also.
It is so sad how the mentally ill were, and in some cases, still are treated. This book starts with the closing of Willard Psychiatric Hospital in New York in 1995. It was in operation since the mid-1800s and thousands of patients were treated there. After it closed, more than 400 suitcases filled with patient belongings were discovered in a dusty attic. The authors used this as an opportunity to examine the lives of some of the patients. While only 10 patients were researched (and the authors admitted that some could not be traced or had no living relatives and so were not good candidates for the book), they are a diverse and representative group - men and women, immigrants, people of color. Their stories are disturbing and unutterably sad. The photos that accompany the stories give you a personal feel for these patients.
My only criticism is that the authors tried too hard to distance themselves from their subjects and while you understand how the system worked - and didn't in many cases - for these patients, it is almost too clinical. And sadly, the system now in place is not much better for many of the mentally ill patients today.
Ever since I learned about the Willard suitcases I l wanted to read this book. Glad I finally got to it! I’m happy that the suitcases were found and some parts of these people’s lives could be told, that their lives served a purpose and that their stories did not remain hidden. But it saddens me to think of the countless lives that have gone in the doors of numerous mental institutions that never left, forever lost to their loved ones.
It’s unbelievable that we still struggle with providing people with the help they need. Maybe one day we can get it right.
This work of non-fiction is quite incredible in its scope and the amount of research that went into it. Darby Penney, a national leader in the human rights movement for people with psychiatric disabilities, and Peter Stastny, a psychiatrist and documentary filmmaker, took on this extraordinary project.
In 1995, after 126 years of operation, the Willard Psychiatric Center in upstate New York was closed. It had been home to 54,000 people. While the closing of the facility was taking place, over 400 suitcases were found in an attic, full of belongings of patients who had never left the facility.
Penney and Stastny took ten of those suitcases, examined their contents, and with a LOT of investigative work, pieced together information about the lives of the people behind the suitcases.
Throughout the book, the history of state-run hospitals is covered, along with information about psychiatric set-backs and break-throughs. The stories of these ten people, as well as the story of the hospital itself, will touch you.
"The Lives They Left Behind" looks at one state mental hospital and it's history by selecting 10 former patients who's belongings were left behind either after their death or after the deinstitutionalization that occurred in the 70s. The author's helped to rescue over 25,000 pieces of luggage left behind and discovered amazing history long ignored.
By choosing 10 individuals, they were able to give them a context amid the horrific and sad history of mental health in the U.S. "The Lives They Left Behind" attempts to root out the past lives of the Willard State Hospital in New York and they often found that these individuals were misdiagnosed, ignored, given inadequate care, given absolutely no solution to their health problems, which more often than not, deteriorated.
If you have an interest in the history of asylums in the U.S. or want a small taste of an institution that is still altering, pick up this book. With such a short but informative history of Willard State Hospital and the people they attempted to "cure", it's a quick and enticing read.
Horrible book, and I didn't finish it. The historical part is somewhat interesting--how in the early 1900s people who were admitted to psychiatric hospitals were kept for life (many for 40+ years!!)--however rather than analyzing why was done and how the understanding of mental illness has changed over time, the authors approached the topic from the perceptive that there is no such thing as mental illness, that it is perfectly normal to hear voices, and that because many people committed in the early 1900s should not have been, the same holds true today.
In my opinion a very dangerous perspective on mental health.
I could not get through it enough to really focus on the suitcases and what they told about the lives of the patients, which would have been interesting, because of the vehemently anti-psychiatry angle of the book.
After a number of old suitcases were found in the attic of Willard Asylum in New York, what was salvageable went into a museum. The authors chose 10 suitcases with enough artifacts in them to collect data on the individuals themselves.
I thought this was a very interesting study and effort to bring these people to light. It does not delve into the abuses of the asylum itself or how the patients were treated. This large institution was run by the patients themselves, as it seemed to help with their treatment. Most were there for years until their death. Some didn't need to be there that long but let's face it, mental illness has been an enigma from the beginning and although things have improved somewhat, a lot has not changed.
Normally I don’t read memoirs or non fiction because it just drags along with clutter. But this one was pretty amazing and very interesting. I took a long time to read it and spend time really getting a better understanding of how mental health was handled over the years. Some parts of it made me want to curl up and cry for these people.
I’m not exactly sure how I stumbled across this book but it was fascinating! Amazing how the authors could piece together the lives of those committed to Willard Psychiatric Center through the contents of their forgotten suitcases. Especially interesting to me since the ex-hospital is “local”. - within a couple of hours drive from home.
Granting humanity to even a few who were locked away in a state asylum is a great idea. Several residents' lives are discussed with care. The author isn't a fan of medication, which is occasionally annoying, but it's a minor quibble with an otherwise important work
This book has a fascinating premise - stories of people's lives cobbled together from the personal effects left in a mental institute, but a horrifying reality because the living conditions for institutionalized and mentally ill people were so poor, and largely remain so now.
Very interesting & sad. I found how scary it was in the early years in the mental health world. It has much improved, but still has a long way to go. I am always reminded that everyone has a story.
Everyone needs to read this book. Amazing perspective and concept that unravels what we didn’t know and what we wish were different about mental health care in America.