The insurance industry and English legal system use the phrase "proximate cause" which has specific meanings relating to legal definitions but can more broadly be thought of as "An act or omission that naturally and directly produces a consequence. It is the superficial or obvious cause for an occurrence. Treating only the "symptoms," or the proximate special cause, may lead to some short-term improvements, but will not prevent the variation from recurring."
Recent events in Portland Oregon surrounding the fatal shooting of Jack Collins by Portland police officer Jason Walters have angered local residents to the point of sparking protests over violent encounters with police officers and even resulted in national media attention and visits from nationally known activists. Much of the discussion has centered upon the actual shooting and the use of deadly force.
While it is easy to view the events as simply a "threat to an officer resulting in the need for deadly force to protect the officer" or "senseless brutality of a person in crisis" depending on your point of view, the issues at work go well beyond the tragedies that both Mr. Collins and officer Walters found themselves entangled.
Mr. Collins, a long-suffering person afflicted with issues of mental illness and substance abuse found himself suffering not only from his disorders, but also from a lack of access to services and effective treatment for his conditions. Indeed, he sought treatment just days before his demise and sought not only help for himself but redemption from the demons that led him to commit a sexual crime decades ago. Mr. Collins was referred to a community mental health treatment provider strapped for resources and with little available access to treatment like so many others who find themselves upon their doorstep. Indeed when attempting to turn himself into the police and confess to past crimes, he was told that the statute of limitations had lapsed and there was nothing that could be done. With only the referral to the clinic as action, Mr. Collins simply disappeared from view only to turn up exiting a public bathroom, bloodied and facing officer Walters.
Officer Walters, a respected and long tenured officer, then found himself in a terrifying and dangerous situation, faced with a person armed with a knife in a difficult physical situation.
However you view the choices officer Walters made, and there are many circumstances to consider, there is no question that neither man deserved to be in the situation that led to the tragic result. It is hard to believe that any person who enters into police work visualizes themselves in a situation where they feel the need to take a life when they swore an oath to serve and protect. Shooting another human being, regardless of their station in life, is a terrible predicament. More often than not, officers have families and loved ones and the stress and resultant difficulties of grand jury investigations, suspensions and fallout from the scrutiny of his actions can exact a terrible toll on anyone in his position.
On the other hand, Mr. Collins neither deserved the loss of his life, or more importantly deserved to suffer the fate of his condition.
So often, there is a desire and need for people to take sides and determine the rightness or wrongness of the participants and far too often we see the unwitting participants as the ones with choices to be made. The point that is missed the the underlying cause, the proximate cause if you will, that set into motion the events that unfolded between the two men who were swept into a chain of events that altered the courses of their existence. There was no winner. Sadly, there were only two people who paid terrible prices for their being thrown into a situation that neither would have chosen had it been their choice to take another path.
We are left with extensive rhetoric about policies and procedures of police engagement, protests of police brutality and lack of understanding of what drove Mr. Collins to acquire a knife and do what he did.
Perhaps we would do better to examine our failures as a community and society. Unless we do, there will undoubtedly be more who suffer the same fate and circumstances as both Mr. Collins and Officer Walters. We can only hope that there is public scrutiny about the problems with access to mental health treatment as well as find better knowledge as to the causes and better treatments for those conditions. Put simply, if there were effective treatments for the challenges faced by Jack Collins, perhaps Jason Walters would not have been called upon to react to a crisis situation and by default be forever linked with the circumstances first suffered by Jack Collins. If not, the names will change and more people will suffer the same tragic fate.
Collins and Walters were truly victimes on the front lines of a struggle that neither wanted to or would have willfully joined. We could prevent others from being future victims. The question before us all is not who is right or wrong, but why we would choose to let others bear the burdens that they have already been asked to bear.
Sunday, April 4, 2010
Monday, April 6, 2009
All Suffering is Not Equal
Friday evening April 3, 2009 Elyn Saks of the University of Southern California presented the Rondeau Lecture at the Oregon Health and Science University in Portland, Oregon. As one of the attendees at that lecture, I can offer my personal observation as to its excellence and to Ms. Saks remarkable story. Elyn Saks is a remarkable individual and should be given credit for her efforts to deal with her disease.
As the auditorium emptied, I was greeted by a long-time acquaintance, a parent who lost their daughter to the effects of schizophrenia. The parent remarked to me that they hoped that not all who attended would view Ms. Saks’ story as being typical. I wholeheartedly agree.
What is particularly frustrating about schizophrenia is the manner in which the disease is diagnosed and treated. Because there is no categorization of mental illness by physical criteria, we are left to use a definition of disease by way of collection of observable and self-reported symptoms. The number of times that I have encountered people, parents and loved ones remark to me that a patient has been misdiagnosed is nauseating. It happened again at the reception prior to Ms. Saks’ presentation. I was introduced to a parent of a person who is hospitalized because of “behavioral/mental” health difficulties. The parent was convinced that the hospital was mistreating the offspring because they were treating them for the wrong disorder. What the parent could not grasp is that there is no “right” treatment for any mental illness. Sadly, treatment can only be evaluated in terms of its effectiveness, at it is far easier to fail at treatment than it is to succeed. There is also, from what I have experienced, no such thing as a “right” diagnosis. Sometimes the diagnosis is consistent over time, but often fluctuates because it is an expression of symptoms.
One of the most frustrating parts of joining the great experiment that we call psychiatry is the gradual realization of the tenuous nature of the diagnosis and treatment of the diseases. While some argue that there is no such thing as mental illness and the study of mental illness is all a scam, nothing could be further from the truth. There is remarkable compelling evidence of pathology in individuals and remarkable stories of treatment and recovery. What is damning about the field is that the history of treatment is littered with failure of treatments and little concrete certainty about anything.
Theories abound as to the causes and treatments for mental disorders but since the definition of the diseases themselves are subject to a degree of interpretation of observations, the diagnosis serves primarily as a way to communicate between those involved with the medical professions, not a mandate for a particular treatment. The invalidity of a given diagnosis is seemingly the most difficult problem facing the field of mental health today. Calling a diagnosis invalid may seem harsh but from the meaning of the term it is perhaps most correct. There is a difference between being reliable (repeatable) and valid (correct).
Ms. Saks has the same diagnosis as my daughter, schizophrenia. In her presentation, she described her treatment and medication regimen which has also been used to a degree of effectiveness with my daughter. To be precise, the exact same medications have been used in both cases, although that is no longer the case. In spite of this, my daughter is not an Oxford Scholar nor does she possess advanced degrees. She does not exhibit the same symptoms and did not react in the same manner as Ms. Saks to her psychosis. She does, however exhibit some of the same symptoms and as a result of displaying those symptoms shares Ms. Saks diagnosis. In spite of the fact that there is no certainty of the causation of either of their conditions, medical science and governments have been clamoring to install “evidence based practices” in the treatment of mental illness. If the precise nature of the illness is not yet defined, how can there be implementation of evidenced based practices to provide treatment? When the search for experimentally validated treatment includes subjects that could have different causes for the same outward symptoms how can the results of such studies have validity when treating an individual case of the disease?
Given the functional nature of disease definitions, the diagnosis of the disease of schizophrenia applies in both cases. However, I can tell from hearing Ms. Saks’ story twice and living through my daughter’s illness, I am reasonably certain that there are substantial differences as to the root causes and reactions to their disorders. Furthermore, Ms. Saks is blessed with a keen intellect and remarkable skills that few people on this planet possess. My daughter is also blessed with some skills, but not of the same type and on the same level as Ms. Saks. The brilliance exhibited by Ms. Saks has rescued her from the terrible fate that is the reality of most who suffer from schizophrenia, disability and the public mental health care system if not incarceration or lack of treatment.
While it is appropriate to celebrate Ms. Saks and hold her story as a remarkable example of what might be achieved, it is more properly respected and looked upon as an anomaly when assessing the state of psychiatric care and treatment. While we salute her efforts and courage, we hope that others do not use her example of what should be expected of others who suffer from the same diagnosis. It is also unreasonable to suggest that others who do not possess her skills would be deserving of our best efforts to provide treatment. After all, while we may be created with equal rights, we are certainly not created with equal capabilities. For some the suffering of similar symptoms will lead to far different personal circumstances. The suffering from the disease will be anything but equal.
As the auditorium emptied, I was greeted by a long-time acquaintance, a parent who lost their daughter to the effects of schizophrenia. The parent remarked to me that they hoped that not all who attended would view Ms. Saks’ story as being typical. I wholeheartedly agree.
What is particularly frustrating about schizophrenia is the manner in which the disease is diagnosed and treated. Because there is no categorization of mental illness by physical criteria, we are left to use a definition of disease by way of collection of observable and self-reported symptoms. The number of times that I have encountered people, parents and loved ones remark to me that a patient has been misdiagnosed is nauseating. It happened again at the reception prior to Ms. Saks’ presentation. I was introduced to a parent of a person who is hospitalized because of “behavioral/mental” health difficulties. The parent was convinced that the hospital was mistreating the offspring because they were treating them for the wrong disorder. What the parent could not grasp is that there is no “right” treatment for any mental illness. Sadly, treatment can only be evaluated in terms of its effectiveness, at it is far easier to fail at treatment than it is to succeed. There is also, from what I have experienced, no such thing as a “right” diagnosis. Sometimes the diagnosis is consistent over time, but often fluctuates because it is an expression of symptoms.
One of the most frustrating parts of joining the great experiment that we call psychiatry is the gradual realization of the tenuous nature of the diagnosis and treatment of the diseases. While some argue that there is no such thing as mental illness and the study of mental illness is all a scam, nothing could be further from the truth. There is remarkable compelling evidence of pathology in individuals and remarkable stories of treatment and recovery. What is damning about the field is that the history of treatment is littered with failure of treatments and little concrete certainty about anything.
Theories abound as to the causes and treatments for mental disorders but since the definition of the diseases themselves are subject to a degree of interpretation of observations, the diagnosis serves primarily as a way to communicate between those involved with the medical professions, not a mandate for a particular treatment. The invalidity of a given diagnosis is seemingly the most difficult problem facing the field of mental health today. Calling a diagnosis invalid may seem harsh but from the meaning of the term it is perhaps most correct. There is a difference between being reliable (repeatable) and valid (correct).
Ms. Saks has the same diagnosis as my daughter, schizophrenia. In her presentation, she described her treatment and medication regimen which has also been used to a degree of effectiveness with my daughter. To be precise, the exact same medications have been used in both cases, although that is no longer the case. In spite of this, my daughter is not an Oxford Scholar nor does she possess advanced degrees. She does not exhibit the same symptoms and did not react in the same manner as Ms. Saks to her psychosis. She does, however exhibit some of the same symptoms and as a result of displaying those symptoms shares Ms. Saks diagnosis. In spite of the fact that there is no certainty of the causation of either of their conditions, medical science and governments have been clamoring to install “evidence based practices” in the treatment of mental illness. If the precise nature of the illness is not yet defined, how can there be implementation of evidenced based practices to provide treatment? When the search for experimentally validated treatment includes subjects that could have different causes for the same outward symptoms how can the results of such studies have validity when treating an individual case of the disease?
Given the functional nature of disease definitions, the diagnosis of the disease of schizophrenia applies in both cases. However, I can tell from hearing Ms. Saks’ story twice and living through my daughter’s illness, I am reasonably certain that there are substantial differences as to the root causes and reactions to their disorders. Furthermore, Ms. Saks is blessed with a keen intellect and remarkable skills that few people on this planet possess. My daughter is also blessed with some skills, but not of the same type and on the same level as Ms. Saks. The brilliance exhibited by Ms. Saks has rescued her from the terrible fate that is the reality of most who suffer from schizophrenia, disability and the public mental health care system if not incarceration or lack of treatment.
While it is appropriate to celebrate Ms. Saks and hold her story as a remarkable example of what might be achieved, it is more properly respected and looked upon as an anomaly when assessing the state of psychiatric care and treatment. While we salute her efforts and courage, we hope that others do not use her example of what should be expected of others who suffer from the same diagnosis. It is also unreasonable to suggest that others who do not possess her skills would be deserving of our best efforts to provide treatment. After all, while we may be created with equal rights, we are certainly not created with equal capabilities. For some the suffering of similar symptoms will lead to far different personal circumstances. The suffering from the disease will be anything but equal.
Monday, March 30, 2009
The Game Changes
March 29, 2009 may go down as a watershed day in the history of psychological disorders. The Detroit Tigers Baseball Club placed one of their players, Dontrelle Willis on the disabled list. Making the disabled list of a professional baseball team is of no particular concern to those who follow mental health issues, but the circumstances in this particular case may be profound in their implications.
Mr. Willis made the disabled list not because of an injury in the manner which is most common to baseball players and professional athletes, Mr. Willis was told that "blood tests" had confirmed to doctors who were treating Mr. Willis that there was cause for concern. What makes this such a watershed day are several circumstances surrounding the case have created a kind of perfect storm that threatens to cause seismic tremors in both the sports and psychiatric communities.
Not the least of these concerns is the pairing of the words "blood test" and "anxiety disorder" in reports surrounding the placement of Mr. Willis on the disabled list. As those who follow the mental health medical world know, mental diseases are classified by the Diagnostic and Statistical Manual that governs such things known specifically as DSM-IV-TR. Like all mental disorders, anxiety is labelled and diagnosed not by blood tests, but by laundry lists of diagnostic criteria. DSM-IV-TR lists thirteen categories of disorders, none of which contains the description "unable to throw a curve ball for strikes" within its criteria.
There are two mentions of blood tests for anxiety that I have located in research material, neither of which I can determine has commercial availability. Clearly, neither of the tests has been generally accepted as a diagnostic tool. Reporter Lynn Henning of the Detroit News who covers the Tigers has written about the delicate and mysterious nature of the placement on the disabled list, confirming that the baseball commissioner's office was consulted in the process. All of this is especially tricky when dealing with laws relating to confidentiality of personal medical records.
What provides additional intrigue to the situation is the amount of money paid to people like Mr. Willis to perform their jobs. Reportedly, the Detroit Tigers are contractually obligated to pay Mr. Willis more than 20 million dollars over the two remaining years on his contract. This makes the baseball club extremely interested in Mr. Willis's ability to perform his job. It also creates a very sensitive situation as respects insurance that clubs purchase to guarantee the ability of their athletes to perform the skills that they have been contracted to perform.
All of these issues have come together to create a kind of perfect situation to shine a light on the issues involved. Sadly, that light is also shone on Mr. Willis, who now, because of the loss of his ability to perform his job is subjected to the most cruel scrutiny by fans and interested parties.
The ramifications have already started to appear in other blogs. In particular, one blog has questioned the validity of the diagnosis and expressed anger in the following way: "I don't appreciate having my disease exploited to bail you out of your own stupid mistakes." The argument is that there were no reports of outward symptoms of anxiety, therefore how dare someone give a diagnosis of anxiety. This may be most unkind toward Mr. Willis in that views about such issues without first hand knowledge only perpetuates stigma and hostility toward what is by most accounts a rather tragic situation.
Most of us who have dealt with a mental illness in our close family do know the degree to which symptoms can be hidden from view and realize the tremendous loss of performance that can result from seemingly mysterious circumstances. In defense of Mr. Willis, he is at an age where his physical abilities should be at his peak. Like most people who seek to perform athletically at a very high level, it runs completely contrary to his history to suggest that he would want to do anything but perform at a high level. If one were to compare the type of scrutiny that he will undergo now as opposed to the attention he would get were he able to perform, there would be no question what any rational person would choose. One might conclude then, that the situation that Mr. Willis finds himself was not done by matter of choice. If it was by matter of choice, then one would conclude that some pathology was guiding that choice.
On a more basic level, the mystery surrounding sports performance and mental issues is littered with the wreckage of multiple careers, but it pales with the suffering of millions of people who suffer the same fate in their everyday lives. The situation that has now grabbed attention shows how poorly we deal with issues like the definition of illnesses like anxiety and how little we actually know about the loss of function in people of all professions.
If there is a silver lining to the story, perhaps it will come in the form of promoting understanding about the underlying physical causes of mental diseases and how to more accurately diagnose and treat them. The great weakness of elaborate classification schemes like DSM-IV-TR is that they simply describe collections of symptoms. They are not explanations of why there is a problem, they are simply a way to agree upon what a collection of symptoms should be called. As such, their weakness is apparent. Should Mr. Willis suddenly begin to throw pitches that are in the strike zone and start getting batters out instead of watching the pitches be hit out of the stadium for home runs would he no longer suffer from anxiety? Clearly, something has caused him to not perform at an expected level. Is it a disease that is rooted at a chemical level? DSM-IV-TR cannot tell you nor can medical science at this point in time. What is more important is if we can discover the real cause of his inability to do what he was able to do before and help him regain his skill, think of what might be done for the millions of others among us who have lost their ability to perform at more modest levels.
The discussion needs to engaged about how outward symptoms and behaviors are related to brain and physical function. Were there tests that could identify particular pathologies of function and lead to treatments for those like Mr. Willis that suddenly lose the ability to perform a function that they once did with relative ease, many would benefit. Until that knowledge is developed, we will all suffer while watching promising careers and lives languish in frustration. Those who find themselves in a similar situation deserve better. If the stakes are high enough, perhaps this event will spark interest in what can be done to help those who suffer the same fate. It could be a defining moment in looking for causes, not stigmatizing those who suffer from similar circumstances.
Let's hope that the search for causes prevails. The fact that physical tests are being discussed give a glimmer of hope that understanding might follow. Goodness know that simply placing blame and stigma is not the answer.
Mr. Willis made the disabled list not because of an injury in the manner which is most common to baseball players and professional athletes, Mr. Willis was told that "blood tests" had confirmed to doctors who were treating Mr. Willis that there was cause for concern. What makes this such a watershed day are several circumstances surrounding the case have created a kind of perfect storm that threatens to cause seismic tremors in both the sports and psychiatric communities.
Not the least of these concerns is the pairing of the words "blood test" and "anxiety disorder" in reports surrounding the placement of Mr. Willis on the disabled list. As those who follow the mental health medical world know, mental diseases are classified by the Diagnostic and Statistical Manual that governs such things known specifically as DSM-IV-TR. Like all mental disorders, anxiety is labelled and diagnosed not by blood tests, but by laundry lists of diagnostic criteria. DSM-IV-TR lists thirteen categories of disorders, none of which contains the description "unable to throw a curve ball for strikes" within its criteria.
There are two mentions of blood tests for anxiety that I have located in research material, neither of which I can determine has commercial availability. Clearly, neither of the tests has been generally accepted as a diagnostic tool. Reporter Lynn Henning of the Detroit News who covers the Tigers has written about the delicate and mysterious nature of the placement on the disabled list, confirming that the baseball commissioner's office was consulted in the process. All of this is especially tricky when dealing with laws relating to confidentiality of personal medical records.
What provides additional intrigue to the situation is the amount of money paid to people like Mr. Willis to perform their jobs. Reportedly, the Detroit Tigers are contractually obligated to pay Mr. Willis more than 20 million dollars over the two remaining years on his contract. This makes the baseball club extremely interested in Mr. Willis's ability to perform his job. It also creates a very sensitive situation as respects insurance that clubs purchase to guarantee the ability of their athletes to perform the skills that they have been contracted to perform.
All of these issues have come together to create a kind of perfect situation to shine a light on the issues involved. Sadly, that light is also shone on Mr. Willis, who now, because of the loss of his ability to perform his job is subjected to the most cruel scrutiny by fans and interested parties.
The ramifications have already started to appear in other blogs. In particular, one blog has questioned the validity of the diagnosis and expressed anger in the following way: "I don't appreciate having my disease exploited to bail you out of your own stupid mistakes." The argument is that there were no reports of outward symptoms of anxiety, therefore how dare someone give a diagnosis of anxiety. This may be most unkind toward Mr. Willis in that views about such issues without first hand knowledge only perpetuates stigma and hostility toward what is by most accounts a rather tragic situation.
Most of us who have dealt with a mental illness in our close family do know the degree to which symptoms can be hidden from view and realize the tremendous loss of performance that can result from seemingly mysterious circumstances. In defense of Mr. Willis, he is at an age where his physical abilities should be at his peak. Like most people who seek to perform athletically at a very high level, it runs completely contrary to his history to suggest that he would want to do anything but perform at a high level. If one were to compare the type of scrutiny that he will undergo now as opposed to the attention he would get were he able to perform, there would be no question what any rational person would choose. One might conclude then, that the situation that Mr. Willis finds himself was not done by matter of choice. If it was by matter of choice, then one would conclude that some pathology was guiding that choice.
On a more basic level, the mystery surrounding sports performance and mental issues is littered with the wreckage of multiple careers, but it pales with the suffering of millions of people who suffer the same fate in their everyday lives. The situation that has now grabbed attention shows how poorly we deal with issues like the definition of illnesses like anxiety and how little we actually know about the loss of function in people of all professions.
If there is a silver lining to the story, perhaps it will come in the form of promoting understanding about the underlying physical causes of mental diseases and how to more accurately diagnose and treat them. The great weakness of elaborate classification schemes like DSM-IV-TR is that they simply describe collections of symptoms. They are not explanations of why there is a problem, they are simply a way to agree upon what a collection of symptoms should be called. As such, their weakness is apparent. Should Mr. Willis suddenly begin to throw pitches that are in the strike zone and start getting batters out instead of watching the pitches be hit out of the stadium for home runs would he no longer suffer from anxiety? Clearly, something has caused him to not perform at an expected level. Is it a disease that is rooted at a chemical level? DSM-IV-TR cannot tell you nor can medical science at this point in time. What is more important is if we can discover the real cause of his inability to do what he was able to do before and help him regain his skill, think of what might be done for the millions of others among us who have lost their ability to perform at more modest levels.
The discussion needs to engaged about how outward symptoms and behaviors are related to brain and physical function. Were there tests that could identify particular pathologies of function and lead to treatments for those like Mr. Willis that suddenly lose the ability to perform a function that they once did with relative ease, many would benefit. Until that knowledge is developed, we will all suffer while watching promising careers and lives languish in frustration. Those who find themselves in a similar situation deserve better. If the stakes are high enough, perhaps this event will spark interest in what can be done to help those who suffer the same fate. It could be a defining moment in looking for causes, not stigmatizing those who suffer from similar circumstances.
Let's hope that the search for causes prevails. The fact that physical tests are being discussed give a glimmer of hope that understanding might follow. Goodness know that simply placing blame and stigma is not the answer.
Thursday, February 26, 2009
Supporting the Caregiver
On a news show last evening there was a video review of the tone of the message used by President Obama to present his budget to the American people. It compared the manner of presentation with that of former presidents Jimmy Carter and Ronald Reagan. As one old enough to remember both Carter, Regan and that era, it was punctuated with energy shortages, high interest rates, inflation, recession and gloom. President Carter faithfully expressed to America that times were tough and we just had to struggle with the problems.
Regan, on the other hand, expressed optimism and the hope and promise of recovery and better days ahead. Sure enough, the better days followed. Not, one could argue, so much from the implementation of his politics but the readjustment of the American Psyche. Today President Obama is also facing the same dilemma as President Carter, having been presented with enormous challenges. He is finding ways of expressing the need to take action, but not to cloak it in the harsh realism that defined Jimmy Carter. Carter was right about the problems, just not the right person to cheer up and inspire America. America opted for the positive message of Regan in spite of its deficits.
So what, you might ask, does this have to do with supporting the caregiver? Yesterday at the end of a meeting discussing the progress of my ill daughter, my wife and I were asked about what support systems we were using to support ourselves. The person went on to describe how terrible and stressful and demanding and horrible it must be to face what we have faced in getting treatment for our daughter. While I realize and acknowledge that the person was attempting to help, they could have no been more misguided on how I personally view the concept of giving care and how I viewed the message. There are good reasons for this perception because I had called the person to express outrage at the difficulty of dealing with the care system. She mistakenly took this to mean that I was frustrated at having to support my loved one. Nothing could be further from the truth. The anger and frustration that I have comes mostly from engaging the care system, not from needing to provide care for my Daughter.
As a parent who willing and knowingly brought a child into the world, you must learn to separate and convey to others how you view the care giving process. In my case, it is simply an obligation to provide for my daughter what she needs. It is an obligation that I take seriously and completely. As a caregiver, what you realize from life experience is that the progress of any given disease is not under your control. Diseases such as diabetes that you have personally you may influence the outcome. As a caregiver you do not have that luxury. What you do have control over is what services can be provided for your loved one in order that they may access the system of care. In my case, the frustration comes more from my experience with the care system than from the person who I care for. The person who is ill did not cause their disease nor do they deliberately sabotage their treatment. They struggle with the limitations and restrictions imposed by their disease.
From the beginning of my daughter's care, there has been, on behalf of the care system, very restrictive limitations on the access to and amount of treatment available to assist her in recovery from her disease. This is one of the great tragedies of mental illness. Whether it is restriction by lack of services, number of treatments or any other measure, the system is not structured from the viewpoint of providing care as much as it is limiting the care to keep down costs. At an even deeper level, science about "behavioral" health cannot even pinpoint the cause of such illness because not enough is known about the diseases themselves. In some circles, the very concept of psychiatry is thought to be phony even though it exists without a doubt to those who have dealt with its presence in their loved ones.
The horror of the disease of schizophrenia is not that it exists, it comes from the idea that we know so little about it and the system we use to treat it is often demeaning and frustrating to engage. As a caregiver, you begin to experience the rigidity of the care system and its rules and regulations and your attempts to maneuver your loved one through that system. It becomes entangled with gatekeepers and care access requirements and is predicated upon the concept of failure at treatment levels which trigger access to greater care upon failure at a less involved level of care.
That you have the responsibility of providing care for your loved one is not what causes the grief and agony. It is far more stressful to be told that your loved one is not sick enough to enter the hospital and that there is nothing the provider of care can do for her. The suggestion to bring her back next month to another appointment and see if her condition has worsened, i.e. she is now homeless so we might be able to take action is what enrages you as a caregiver.
While all of this goes on, your experience as a caregiver is called horrible, terrifying, frustrating and burdensome. I have yet to hear it described without some measure of negative expression or how bad it is to experience. While it is true that you can become frustrated, irritated and annoyed, it is the outward manifestation of the disease and your interaction with the rigidity of the care system that most wears on your psyche. Anyone who perseveres in providing for their loved one knows that deep inside them is still the essence of someone who shares the same desire to enjoy life and find happiness in the world. The fact that your loved one is still alive and functioning keeps hope alive that you will have some positive interaction at some future time unlike other people who have lost their loved ones forever.
Perhaps we should look to how President Obama and Ronald Regan viewed the collective psyche and express appreciation of the efforts of the caregivers and the success they have achieved in helping their family members. When a person tells you that they want to help you find support because you have experienced a terrible and difficult process that has brought you down and drained your spirit, perhaps it is true. However, describing it as a negative experience fails to acknowledge what the caregiver has accomplished. To keep your loved one relatively safe and secure, to engage them with a treatment process, however flawed, and to give them a chance at recovery where others are lost and whereabouts unknown is an accomplishment that we take considerable pride in, not view with horror and tragedy. The disease is a tragedy, not our experience. The care giver's strength comes from a sense of accomplishment of fighting the good fight however bleak the outcome at the moment. Properly viewed, it is soured by the resistance of the care system to provide well organized and responsive care, not by the progress of their loved one.
The need for support systems for caregivers is not to relieve their burden, it is to make the caregiver even more effective and assist in their efforts. Expressions of support are best viewed as how can we provide greater assistance in helping you help your loved one. Like Jimmy Carter, we are well versed in the reality of what we face. Use a little bit of Ronald Regan and Barack Obama inspiration that focuses more on future potential than on present difficulties. That will lighten the load of caregiving considerably.
Regan, on the other hand, expressed optimism and the hope and promise of recovery and better days ahead. Sure enough, the better days followed. Not, one could argue, so much from the implementation of his politics but the readjustment of the American Psyche. Today President Obama is also facing the same dilemma as President Carter, having been presented with enormous challenges. He is finding ways of expressing the need to take action, but not to cloak it in the harsh realism that defined Jimmy Carter. Carter was right about the problems, just not the right person to cheer up and inspire America. America opted for the positive message of Regan in spite of its deficits.
So what, you might ask, does this have to do with supporting the caregiver? Yesterday at the end of a meeting discussing the progress of my ill daughter, my wife and I were asked about what support systems we were using to support ourselves. The person went on to describe how terrible and stressful and demanding and horrible it must be to face what we have faced in getting treatment for our daughter. While I realize and acknowledge that the person was attempting to help, they could have no been more misguided on how I personally view the concept of giving care and how I viewed the message. There are good reasons for this perception because I had called the person to express outrage at the difficulty of dealing with the care system. She mistakenly took this to mean that I was frustrated at having to support my loved one. Nothing could be further from the truth. The anger and frustration that I have comes mostly from engaging the care system, not from needing to provide care for my Daughter.
As a parent who willing and knowingly brought a child into the world, you must learn to separate and convey to others how you view the care giving process. In my case, it is simply an obligation to provide for my daughter what she needs. It is an obligation that I take seriously and completely. As a caregiver, what you realize from life experience is that the progress of any given disease is not under your control. Diseases such as diabetes that you have personally you may influence the outcome. As a caregiver you do not have that luxury. What you do have control over is what services can be provided for your loved one in order that they may access the system of care. In my case, the frustration comes more from my experience with the care system than from the person who I care for. The person who is ill did not cause their disease nor do they deliberately sabotage their treatment. They struggle with the limitations and restrictions imposed by their disease.
From the beginning of my daughter's care, there has been, on behalf of the care system, very restrictive limitations on the access to and amount of treatment available to assist her in recovery from her disease. This is one of the great tragedies of mental illness. Whether it is restriction by lack of services, number of treatments or any other measure, the system is not structured from the viewpoint of providing care as much as it is limiting the care to keep down costs. At an even deeper level, science about "behavioral" health cannot even pinpoint the cause of such illness because not enough is known about the diseases themselves. In some circles, the very concept of psychiatry is thought to be phony even though it exists without a doubt to those who have dealt with its presence in their loved ones.
The horror of the disease of schizophrenia is not that it exists, it comes from the idea that we know so little about it and the system we use to treat it is often demeaning and frustrating to engage. As a caregiver, you begin to experience the rigidity of the care system and its rules and regulations and your attempts to maneuver your loved one through that system. It becomes entangled with gatekeepers and care access requirements and is predicated upon the concept of failure at treatment levels which trigger access to greater care upon failure at a less involved level of care.
That you have the responsibility of providing care for your loved one is not what causes the grief and agony. It is far more stressful to be told that your loved one is not sick enough to enter the hospital and that there is nothing the provider of care can do for her. The suggestion to bring her back next month to another appointment and see if her condition has worsened, i.e. she is now homeless so we might be able to take action is what enrages you as a caregiver.
While all of this goes on, your experience as a caregiver is called horrible, terrifying, frustrating and burdensome. I have yet to hear it described without some measure of negative expression or how bad it is to experience. While it is true that you can become frustrated, irritated and annoyed, it is the outward manifestation of the disease and your interaction with the rigidity of the care system that most wears on your psyche. Anyone who perseveres in providing for their loved one knows that deep inside them is still the essence of someone who shares the same desire to enjoy life and find happiness in the world. The fact that your loved one is still alive and functioning keeps hope alive that you will have some positive interaction at some future time unlike other people who have lost their loved ones forever.
Perhaps we should look to how President Obama and Ronald Regan viewed the collective psyche and express appreciation of the efforts of the caregivers and the success they have achieved in helping their family members. When a person tells you that they want to help you find support because you have experienced a terrible and difficult process that has brought you down and drained your spirit, perhaps it is true. However, describing it as a negative experience fails to acknowledge what the caregiver has accomplished. To keep your loved one relatively safe and secure, to engage them with a treatment process, however flawed, and to give them a chance at recovery where others are lost and whereabouts unknown is an accomplishment that we take considerable pride in, not view with horror and tragedy. The disease is a tragedy, not our experience. The care giver's strength comes from a sense of accomplishment of fighting the good fight however bleak the outcome at the moment. Properly viewed, it is soured by the resistance of the care system to provide well organized and responsive care, not by the progress of their loved one.
The need for support systems for caregivers is not to relieve their burden, it is to make the caregiver even more effective and assist in their efforts. Expressions of support are best viewed as how can we provide greater assistance in helping you help your loved one. Like Jimmy Carter, we are well versed in the reality of what we face. Use a little bit of Ronald Regan and Barack Obama inspiration that focuses more on future potential than on present difficulties. That will lighten the load of caregiving considerably.
Thursday, February 5, 2009
The Bigger Picture
Last evening I attended a meeting that focused on the Crisis Intervention Training program that is intended as a supplemental training for police officers of Portland, Oregon. The roots of this program go back to the mid 1990's but it was the tragic death of Jim Chasse who was in custody of police officers that was the reason that the city of Portland moved to make the training mandatory for police officers.
Crisis Intervention, as a program of training, started in Memphis Tennessee as the response to another tragic situation and was conceived as a voluntary, not mandatory set of skills. The idea was that not all people are of a psychological makeup to integrate and use the skills taught in the program. While the voluntary idea may have some merit, the larger view of society, behavioral problems and the role of police forces could use some examination to help put the training in a proper context.
It is useful to study what societal decisions we have made that get us to the point where we now struggle with mental health problems and understand why those decisions brought us to our present state of affairs. In this case we are at the confluence of mental illness, care for those mental diseases and the maintenance of order in our society.
In the mid-1950's common societal practice was to place those suffering from severe mental disease away from everyday society in mental institutions commonly called asylums. More than half a million people in our country were removed from everyday life and subject to often terrifying conditions of asylums. While originally conceived as separate and compassionate respite homes designed to reduce stressful demands, they had more often deteriorated into overcrowded, decrepit warehouses stuffed with a variety of residents that were a jumble of persons with mismatched and differing behavioral problems.
Because these institutions were very expensive to operate and staff it was a great financial drain on governments to provide proper funding for the residents of the facilities. Because the conditions were poor and because some advances in medications showed promise in treating the diseases and because governments were very interested in saving money, public policy shifted and started a massive closure of the facilities and removal of people with mental disease from institutions and back into the communities. All of this was done in a very rapid manner with only the general promise of the creation of the Community Mental Health system.
Like most promises of Government, the promise was only good until requested to be funded. In true American style, we demand services and refuse to pay for them. In this case, there was a need for about fifteen hundred community mental health facilities and only about seven hundred and fifty were funded. On the expense savings side, however, government was extraordinarily effective and reduced the number of residents in the asylums by 90 percent in a few short years.
What, you might ask, is the result of this massive policy shift? We created a massive homeless class that wanders our streets, ill but untreated, begging for resources that are too few in number. Meanwhile the Federal Government, in order to keep states from just recreating large residential treatment centers, passed a restriction of funding any treatment facility with more that 16 residents. This effectively keeps anyone from gathering large numbers of mentally ill persons in large scale treatment institutions. It did not, however, keep them from being collected elsewhere.
Like all well-intended programs and laws, these actions did not, as hoped, have anything like the desired effect. While a small number of persons were returned to their communities and were successfully reintegrated, those with severe symptoms and very difficult behavioral problems "fell through the cracks" as the expression goes and everyone ends up somewhere. Some simply died. Recent statics on the lifespan of those with severe mental illness suggests that their lifespan is nearly 25 years shorter than their fellow citizens. Some also were helped by newer medications and supportive families. After all, having a social safety net is really great for everyone if those who gave birth to those with illness are put into the position of providing as much of the burden of care as possible.
Many of the rest simply over time were transferred to the care and custody of a different governmental organization. Where might you ask did they go? Look no further that our jails and prisons. The massive increase in prison populations in America coincides with the emptying of asylums.
Few things are more popular with voters that "getting tough on crime." Americans love to put people behind bars and keep the "bad" people away from them. We spend massive amounts on alarms and security, locks and deadbolts, guns to protect ourselves and any other manner of self-protection. We love making mandatory sentences, television shows about "bad guys" and thinking up new laws about how to punish people. We look for our police forces to protect us and control the streets and any incident that brings us harm has us begging for more protection and locking up more people.
The problem with all of this is we simply transferred the populations that once inhabited asylums in terrible conditions into jail cells and asked our police forces to be the front lines in the management of mental health disorders.
Our police forces are now stuck with a responsibility that was never intended, treating medical conditions with guns and weapons. We are asking officers to do the impossible, control mental disorders with techniques that were designed to control people who's intent was to rob or steal for personal gain. This is the heart of the problem. Those who are in mental crisis are not acting out of the same reasons of behavior as those intending to simply steal from or harm another. As a society, we have mixed into the mess on the streets behaviors that are caused by physical and chemical abnormalities of the brain and asked the police to adapt to the situation without proper training. Asking the police to separate mental illness and criminality and make split second judgements regarding their own safety is like looking for a gasoline can in a dark garage with a lighted match. We are creating an explosive situation. We are also, if you look at the situations that pepper our news stories, doing very poorly.
The answer lies not in more police training, although that is also part of the solution, but in creation of a workable mental health treatment system. Perhaps we will as a society someday find a better more humane and intelligent care system. Until then, far too many will find the police departments as their first line of treatment and far too many will have given their lives while we clumsily search for better answers.
Crisis intervention Training is commendable. It is life-changing. It life-saving. It is not, however, a solution. The real solution is the study and treatment of mental disease and finding a way to treat and care for those who suffer its ravages. Until we find cures and effective treatments, we are asking police to do what we have not done as a society. We are asking for the impossible.
Crisis Intervention, as a program of training, started in Memphis Tennessee as the response to another tragic situation and was conceived as a voluntary, not mandatory set of skills. The idea was that not all people are of a psychological makeup to integrate and use the skills taught in the program. While the voluntary idea may have some merit, the larger view of society, behavioral problems and the role of police forces could use some examination to help put the training in a proper context.
It is useful to study what societal decisions we have made that get us to the point where we now struggle with mental health problems and understand why those decisions brought us to our present state of affairs. In this case we are at the confluence of mental illness, care for those mental diseases and the maintenance of order in our society.
In the mid-1950's common societal practice was to place those suffering from severe mental disease away from everyday society in mental institutions commonly called asylums. More than half a million people in our country were removed from everyday life and subject to often terrifying conditions of asylums. While originally conceived as separate and compassionate respite homes designed to reduce stressful demands, they had more often deteriorated into overcrowded, decrepit warehouses stuffed with a variety of residents that were a jumble of persons with mismatched and differing behavioral problems.
Because these institutions were very expensive to operate and staff it was a great financial drain on governments to provide proper funding for the residents of the facilities. Because the conditions were poor and because some advances in medications showed promise in treating the diseases and because governments were very interested in saving money, public policy shifted and started a massive closure of the facilities and removal of people with mental disease from institutions and back into the communities. All of this was done in a very rapid manner with only the general promise of the creation of the Community Mental Health system.
Like most promises of Government, the promise was only good until requested to be funded. In true American style, we demand services and refuse to pay for them. In this case, there was a need for about fifteen hundred community mental health facilities and only about seven hundred and fifty were funded. On the expense savings side, however, government was extraordinarily effective and reduced the number of residents in the asylums by 90 percent in a few short years.
What, you might ask, is the result of this massive policy shift? We created a massive homeless class that wanders our streets, ill but untreated, begging for resources that are too few in number. Meanwhile the Federal Government, in order to keep states from just recreating large residential treatment centers, passed a restriction of funding any treatment facility with more that 16 residents. This effectively keeps anyone from gathering large numbers of mentally ill persons in large scale treatment institutions. It did not, however, keep them from being collected elsewhere.
Like all well-intended programs and laws, these actions did not, as hoped, have anything like the desired effect. While a small number of persons were returned to their communities and were successfully reintegrated, those with severe symptoms and very difficult behavioral problems "fell through the cracks" as the expression goes and everyone ends up somewhere. Some simply died. Recent statics on the lifespan of those with severe mental illness suggests that their lifespan is nearly 25 years shorter than their fellow citizens. Some also were helped by newer medications and supportive families. After all, having a social safety net is really great for everyone if those who gave birth to those with illness are put into the position of providing as much of the burden of care as possible.
Many of the rest simply over time were transferred to the care and custody of a different governmental organization. Where might you ask did they go? Look no further that our jails and prisons. The massive increase in prison populations in America coincides with the emptying of asylums.
Few things are more popular with voters that "getting tough on crime." Americans love to put people behind bars and keep the "bad" people away from them. We spend massive amounts on alarms and security, locks and deadbolts, guns to protect ourselves and any other manner of self-protection. We love making mandatory sentences, television shows about "bad guys" and thinking up new laws about how to punish people. We look for our police forces to protect us and control the streets and any incident that brings us harm has us begging for more protection and locking up more people.
The problem with all of this is we simply transferred the populations that once inhabited asylums in terrible conditions into jail cells and asked our police forces to be the front lines in the management of mental health disorders.
Our police forces are now stuck with a responsibility that was never intended, treating medical conditions with guns and weapons. We are asking officers to do the impossible, control mental disorders with techniques that were designed to control people who's intent was to rob or steal for personal gain. This is the heart of the problem. Those who are in mental crisis are not acting out of the same reasons of behavior as those intending to simply steal from or harm another. As a society, we have mixed into the mess on the streets behaviors that are caused by physical and chemical abnormalities of the brain and asked the police to adapt to the situation without proper training. Asking the police to separate mental illness and criminality and make split second judgements regarding their own safety is like looking for a gasoline can in a dark garage with a lighted match. We are creating an explosive situation. We are also, if you look at the situations that pepper our news stories, doing very poorly.
The answer lies not in more police training, although that is also part of the solution, but in creation of a workable mental health treatment system. Perhaps we will as a society someday find a better more humane and intelligent care system. Until then, far too many will find the police departments as their first line of treatment and far too many will have given their lives while we clumsily search for better answers.
Crisis intervention Training is commendable. It is life-changing. It life-saving. It is not, however, a solution. The real solution is the study and treatment of mental disease and finding a way to treat and care for those who suffer its ravages. Until we find cures and effective treatments, we are asking police to do what we have not done as a society. We are asking for the impossible.
Saturday, December 6, 2008
Better Life Through Chemistry?
A current article on MSN written by Rich Maloof poses the question if chocolate or good deeds, either of which lead to a good feeling, are processed differently by the mind or does it make a difference chemically? If there is no difference chemically, then is morality somehow influenced by the resultant chemical reaction in the brain?
It is a very good question, but it points out more about what we do not know about the chemical nature of the brain than what we can pretend to know about the nature of existence and morality or theology. The act of human thought or consciousness confounds us with its seeming simplicity yet profound nature.
Those of us who are involved with mental health issues with family members or loved ones cry out for understanding of the processes that effect mental wellness. We study neurotransmitters and genetics trying to find answers that will bring relief to those who suffer from abnormalities of thought or mood processes. Biology and Chemistry have given us such wonderful scientific models of things like the glucose energy process and the effects of dietary and exercise regimens that can be used to control the effects of unregulated blood glucose levels brought on by the various forms of diabetes. Unlike the blood transport system, the neurotransmitter and mental functions are far less easy to define in their exact chemical nature. Much is known about the areas of the brain that control various functions such as vision and speech, but mental functions and how they affect behavior still pose difficult research problems due to the physical nature of the operations themselves.
If we were to look at the brain as a chemical processor, which it most certainly is, we could simply ask science to continue to further refine and understand the chemical processes and theoretically end up with a model that would explain everything that we want to understand. That however, ends up with a rather "simplistic" reduction of life as a series of chemical processes. Unlike the blood sugar model, there are many times more neurotransmitters and receptors to categorize and explain and that does not begin to account for variations in message transmissions that are encoded in languages that are learned.
For now it might be easier to hope for some explanation of the gross malfunctions of mental disease and hope for better therapies. If chocolate and good deeds lead to a better feeling of wellness, perhaps we can simply be comforted with that thought. The reason why that is does not need immediate attention. Some things my be better left as accepted and wait for an explanation later.
It is a very good question, but it points out more about what we do not know about the chemical nature of the brain than what we can pretend to know about the nature of existence and morality or theology. The act of human thought or consciousness confounds us with its seeming simplicity yet profound nature.
Those of us who are involved with mental health issues with family members or loved ones cry out for understanding of the processes that effect mental wellness. We study neurotransmitters and genetics trying to find answers that will bring relief to those who suffer from abnormalities of thought or mood processes. Biology and Chemistry have given us such wonderful scientific models of things like the glucose energy process and the effects of dietary and exercise regimens that can be used to control the effects of unregulated blood glucose levels brought on by the various forms of diabetes. Unlike the blood transport system, the neurotransmitter and mental functions are far less easy to define in their exact chemical nature. Much is known about the areas of the brain that control various functions such as vision and speech, but mental functions and how they affect behavior still pose difficult research problems due to the physical nature of the operations themselves.
If we were to look at the brain as a chemical processor, which it most certainly is, we could simply ask science to continue to further refine and understand the chemical processes and theoretically end up with a model that would explain everything that we want to understand. That however, ends up with a rather "simplistic" reduction of life as a series of chemical processes. Unlike the blood sugar model, there are many times more neurotransmitters and receptors to categorize and explain and that does not begin to account for variations in message transmissions that are encoded in languages that are learned.
For now it might be easier to hope for some explanation of the gross malfunctions of mental disease and hope for better therapies. If chocolate and good deeds lead to a better feeling of wellness, perhaps we can simply be comforted with that thought. The reason why that is does not need immediate attention. Some things my be better left as accepted and wait for an explanation later.
Friday, November 7, 2008
It Will Not Happen Here Next Year
Earlier this week our nation made an historic choice for president. As Mr. Obama addressed the nation for the first time as president-elect, I was struck by the tone of humility and lack of excitement in his voice as he recounted the momentous occasion. Many of his supporters wept openly and cheered wildly at his words, inspired by his accomplishment. Mr. Obama chose, however, to reflect not upon his personal achievement of being elected, but on the hard work that now faces the new administration. His personal reflections were spoken of in terms of America taking a new direction. In effect, the message was not about himself and personal triumph, but of the need to move forward in a new direction.
There was also a dramatic shift in the rhetoric about his opponent. Both candidates immediately shifted away from the political rancor of the campaign toward a message of the common interests of American citizens. Completely gone were the personal charges of cavorting with terrorists, being unstable and being unprepared to be president.
In a somewhat similar fashion on a microscopic level, I have some of the same feelings as Mr. Obama about the issues surrounding my advocacy efforts on the haunted house issue. Yesterday a letter arrived from the City of Portland detailing the action taken about the protest that I filed about the haunted house being held on a city-owned property. The parties involved had met and the issue had been discussed about the design of the house being based upon the depiction of those in an asylum going on an uncontrolled rampage. The city and facility management both expressed support for the position that events with depictions such as this should not be held on public property. The event planner, while angered over my approach and expressing the position that the event was due to be redesigned, got the message that such depictions were not appropriate.
There was no joy in vindication of my advocacy position. As in the election for President, it was never as much about the vanquishing of an opponent as it was about having people adopt a more enlightened position about such depictions. Further, the design of the house should never have been viewed as displaying an intent to discriminate against those with mental illness, rather, it should be viewed for what it usually is, an insensitive portrayal.
Reflecting upon the issue gives you greater perspective about the path that people of color who are currently in the minority in our country can see in portrayals of stereotypes and stigma surrounding their situation. Much of the portrayal of minorities was perhaps not intended to be hurtful, but a horrifyingly degrading message was nevertheless sent to those in the minority. Those sending the message may be woefully unaware of the harm done to others, and may not understand what they have done.
This should be no excuse for those who promote stigma and prejudice regardless of the intent. Unintentional harm is every bit a bad as that created with intent to the person being harmed. A far worse form of injustice is done when the person who has unintentionally harmed another refuses to admit the error of their ways. That is when advocacy is truly necessary. America has learned some painful lessons in its history and has many more lessons yet to be learned.
The prejudice and stigma associated with mental illness is one such lesson. In this case, pressure can be applied to the situation and keep that venue from hosting such events in the future. More important, however, is the awareness created about the fundamental issue of depictions with those who suffer from mental illness and the unwitting advertisers and promoters of such events. All of the sponsors, publicists and locations involved in this situation responded with empathy to the issue and real progress was made in assuring that sponsors of future events will keep a more critical eye on the design considerations of those events.
If there is a reason to celebrate any part of the process it comes from a personal friend who has spent time in a State Hospital. She wrote "As one of the people who was offended by the Halloween Attraction, I do understand that there was no malice involved . . . Thanks to your sharing this information, I have a much better understanding and wish for a better outcome next year." That Ashleigh is able to put into perspective those thoughts and ease her hurt, is reason to celebrate for her well being.
Like Mr. Obama, the reflection here should not be about the process or "winning" or "losing." The real point is the awareness of people about the issues involved and moving forward to a place of acceptance and understanding. No one should use the plight of others to perpetuate prejudice and profit from that portrayal regardless of the lack of intent to harm others. We must stand vigilant to protect those who are marginalized until they are no longer marginalized. Mr. Obama's election shows that we are ever closer to that goal regarding the issue of race. Perhaps someday, we will recognize that those with mental illness simply suffer from diseases and deserve better than marginalization and prejudicial portrayals.
When that day comes we will be able to say "It will not happen here next year."
There was also a dramatic shift in the rhetoric about his opponent. Both candidates immediately shifted away from the political rancor of the campaign toward a message of the common interests of American citizens. Completely gone were the personal charges of cavorting with terrorists, being unstable and being unprepared to be president.
In a somewhat similar fashion on a microscopic level, I have some of the same feelings as Mr. Obama about the issues surrounding my advocacy efforts on the haunted house issue. Yesterday a letter arrived from the City of Portland detailing the action taken about the protest that I filed about the haunted house being held on a city-owned property. The parties involved had met and the issue had been discussed about the design of the house being based upon the depiction of those in an asylum going on an uncontrolled rampage. The city and facility management both expressed support for the position that events with depictions such as this should not be held on public property. The event planner, while angered over my approach and expressing the position that the event was due to be redesigned, got the message that such depictions were not appropriate.
There was no joy in vindication of my advocacy position. As in the election for President, it was never as much about the vanquishing of an opponent as it was about having people adopt a more enlightened position about such depictions. Further, the design of the house should never have been viewed as displaying an intent to discriminate against those with mental illness, rather, it should be viewed for what it usually is, an insensitive portrayal.
Reflecting upon the issue gives you greater perspective about the path that people of color who are currently in the minority in our country can see in portrayals of stereotypes and stigma surrounding their situation. Much of the portrayal of minorities was perhaps not intended to be hurtful, but a horrifyingly degrading message was nevertheless sent to those in the minority. Those sending the message may be woefully unaware of the harm done to others, and may not understand what they have done.
This should be no excuse for those who promote stigma and prejudice regardless of the intent. Unintentional harm is every bit a bad as that created with intent to the person being harmed. A far worse form of injustice is done when the person who has unintentionally harmed another refuses to admit the error of their ways. That is when advocacy is truly necessary. America has learned some painful lessons in its history and has many more lessons yet to be learned.
The prejudice and stigma associated with mental illness is one such lesson. In this case, pressure can be applied to the situation and keep that venue from hosting such events in the future. More important, however, is the awareness created about the fundamental issue of depictions with those who suffer from mental illness and the unwitting advertisers and promoters of such events. All of the sponsors, publicists and locations involved in this situation responded with empathy to the issue and real progress was made in assuring that sponsors of future events will keep a more critical eye on the design considerations of those events.
If there is a reason to celebrate any part of the process it comes from a personal friend who has spent time in a State Hospital. She wrote "As one of the people who was offended by the Halloween Attraction, I do understand that there was no malice involved . . . Thanks to your sharing this information, I have a much better understanding and wish for a better outcome next year." That Ashleigh is able to put into perspective those thoughts and ease her hurt, is reason to celebrate for her well being.
Like Mr. Obama, the reflection here should not be about the process or "winning" or "losing." The real point is the awareness of people about the issues involved and moving forward to a place of acceptance and understanding. No one should use the plight of others to perpetuate prejudice and profit from that portrayal regardless of the lack of intent to harm others. We must stand vigilant to protect those who are marginalized until they are no longer marginalized. Mr. Obama's election shows that we are ever closer to that goal regarding the issue of race. Perhaps someday, we will recognize that those with mental illness simply suffer from diseases and deserve better than marginalization and prejudicial portrayals.
When that day comes we will be able to say "It will not happen here next year."
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