Help is not help if it is not helpful

Silence: What We Don't Talk About in Rehabilitation


Patricia E. Deegan Ph.D.
Presented at SKUR Conference, BODØ, Norway
June 14, 2005
Copyright © Pat Deegan, PhD & Associates, LLC.


For permission to distribute please contact us.


Good morning. Thank you for this opportunity to speak with you today. I really like the title of this conference: Det Vi Ikke Snakker Om - What We Don't Talk About in Rehabilitation. What a great subject for a conference! In the next two days we will have the chance to explore silences. We will have the chance to examine some of the things society and the rehabilitation professions don't talk about, or prefer not to listen to.


I think it is significant that we are having this conference about silences in Bodo, above the Arctic Circle in Norway. Ever since I was a young girl, I have dreamed of coming to the Arctic. As a young girl, I would imagine myself standing utterly alone on a flat, frozen landscape of ice and bright light. In my mind's eye I was always a tiny red spec in a white ice field, wearing a red hooded jacket that fluttered like a Buddhist prayer flag against the summits. I would imagine that perhaps I was the first and only human to have stood on that precise spot. And as I imagined myself standing on that ice field, the thing I most wondered about was what the silence of that place sounded like. What does arctic silence sound like? What is the sound of a silence so vast and pristine and still? What is the sound of arctic silence, with me standing in the midst of it, unspeaking, beholding, and being held (beheld) by it? Surely, I imagined, such a silence would be a good and wondrous thing. At church I had heard the psalm (46:10) where God said, "Be still and know that I Am". Even as a girl I wanted to know that stillness and that silence.


I never did get to the Arctic as a child. Instead, the silence I imagined in my childhood was shattered when, at the age of 17, I experienced the onslaught of distressing voices, or what clinicians call auditory hallucinations. I remember exactly where I was when the distressing voices started. I was a passenger in the front seat of a car that was going down a highway with a lot of curves on it. As each new curve loomed in front of me, a voice would hiss, "Watch out. It's coming." My stomach would clench, a terror would come over me, the car would round the curve and approach the next one. Again a voice would curse, "Killing. Spilling. Watch out it's coming". I remember looking around to see where these voices were coming from, but I could not see who was speaking the words. However, I did notice that everyone else in the car seemed unperturbed, as if they were just listening to the radio. Soon after, I began to notice that instead of being upset by these terrible voices, all the people in the car were glancing sideways at me with their lips turned up in barely disguised snarls. Were they part of it? Were they part of what was coming? What was coming? What did the voices mean? I yelled for the driver to pull over to the side of the highway, stumbled out of the car and vomited as the voices laughed at me.


Following two weeks of such torment, I was locked in a psychiatric institution and diagnosed with schizophrenia. After a brief interview with a psychiatrist, I was taken to a room and injected with an antipsychotic drug called haloperidol. When I awoke from that drug-induced stupor, I could barely recognize myself. My tongue was thick. My vision was blurred. Saliva drooled and leaked down my face. The medication made it hard to swallow, so food spilled and soiled my shirt. I began to smell of last night's supper. Just weeks before I had been a strong athlete who excelled in sports. Now I was in a chemical straightjacket. I moved stiffly and slowly, as if some old woman had crawled into my body and my bones were nothing but arthritic crutches, propping me up against the wall of a mental institution.


Drugged on haloperidol I could not feel anything. I did not care about anything. I could not smile or laugh or cry or think. In the distance I could still hear the auditory hallucinations, but they had lost their power to grab my innards and shake me to attention. They drummed like a dull ache in the background and were easy to ignore. Everything and everyone else were also easy to ignore, because I cared about nothing and felt nothing. I had been muted. I had become the muted body. I had been silenced – erased and disappeared under the tyranny of those small green pills.
It is widely assumed that anti-psychotic drugs are helpful because they suppress psychosis and restore one to a more familiar sense of self. In my experience, antipsychotic drugs at these high dosage levels were not helpful. Haloperidol did not return me to a non-psychotic, more familiar self. Rather, it delivered me into a negation of myself, an absence, a silenced echo of my former self.


Haloperidol replaced me with the drugged-me. And worst of all, the professionals kept telling me how good this medication was for me. They kept telling me I would have to take this medicine for the rest of my life. They said I should be grateful modern psychiatry had a medicine that could so quickly restore my functioning. The psychiatrist said my hallucinations and delusions were gone. The symptoms were abating he said. I was more in control and I was stabilizing he said. From my perspective, however, things appeared quite different. I did not feel better. The so-called hallucinations were still there although they were no longer a bother to the people around me. I was not more in control but rather, I felt controlled by the medication. I was not stabilizing. Rather I was becoming a shadow of my former self, unable to think or feel. I was not beginning to function. Instead, I was learning to play the game in order to get discharged from that institution as soon as possible. I was not grateful for this medicine. I was not grateful for this help. As far as I was concerned, this help was not helpful.


What I am describing here is a clash of perception between the psychiatrist and myself. This chart summarizes some of the main points of that clash of perception:


Table 1: The Clash of Perception

Psychiatrist	Me
You are getting better	Your cure is disabling me
Your symptoms are gone	My symptoms no longer bother you
You are more in control	Haloperidol is controlling me
You are stable	I can’t think or feel
You are functioning again	My life is without meaning or passion



It is important to remember that this clash of perceptions I am describing went largely unspoken and unacknowledged. The psychiatrist and I did not sit down and have a thorough discussion of our divergent perspectives. It is also important to see there is a terrible power imbalance here. This clash of perception occurred between a psychiatrist and myself during one of my most vulnerable times. Because of his enormous power in relation to me, the psychiatrist's interpretation of me became the only valid story. His story about me became the truth and my story, my experience and my voice were silenced. What I am describing, therefore, is a double silencing. The first silencing was imposed by a therapy (haloperidol) that muted me. The second silencing was imposed when my experience of the therapy was ignored and the professional's interpretation of the outcome of therapy was prescribed as the only truth.


The silencing I am describing is not confined to people with psychiatric disabilities. Silencing people with disabilities through the assertion of the expert's professional opinion occurs routinely. It is not uncommon for an expert to declare that a person is making good progress in a sheltered workshop while the person with the disability feels like a failure because they are not working a real job. It is not uncommon for a rehabilitation specialist to applaud the progress a child is making in speech therapy, although the child is quite clear they are tired of all the therapy and would rather play with kids in the neighborhood after school. In these and thousands of other instances, the professional's interpretation becomes the official story while the stories, the voices and the experiences of disabled people are silenced.


Who gets to say if a therapy is working? Whose directives are followed and whose are silenced? Who gets to say if professional help is helpful? I would propose that help which ignores the perspective and autonomy of the person with a disability is toxic help. Toxic help is, at best, a waste of time, money and resources and, at worst, toxic help hurts and may even kill.


Help, and in particular toxic help, is not a topic that is discussed often in professional rehabilitation cultures. The nature of help is one of those topics about which we are often silent because we are too busy being helpful to stop to talk about it. But we must break that taboo. We must dare to talk about help because power, including the power to oppress, often disguises itself as help. Power-disguised-as-help is used to silence disabled people. Paolo Freire (1989) says that oppressive power submerges the consciousness of the oppressed into a culture of silence. Toxic help oppresses and silences people with disabilities. Just like the oppressive silencing I experienced with the psychiatrist, those of us with disabilities have been the recipients – whether willing or unwilling – of a lot of toxic help. We have become experts at seeing oppressive power cloaked in the disguise of help. * From that silence has emerged the irreverent and emancipated voice of people with disabilities or, as we call ourselves, the dis-labled:


Perhaps one of the most fundamental critiques that the disability community makes about toxic help is that it is not unusual to find ourselves completely surrounded by helpers yet still unable to find help. Cartoonist and disability activist Scott Chambers (2000) captures the irony many disabled people experience, that is, the irony of drowning in rehabilitation help that is unhelpful.





  
*Scott Chambers calls this piece, "Tested and Proven Methods of Drowning in Help". * In this first cartoon strip, we see a person in the water who looks pretty distressed. He is calling out "Help!". Next we see the person looking up into the air only to discover that a wheelchair has been thrown to him. In the next slide we see that the wheelchair, having landed on the man's head, is now sinking along with the man, to the bottom of the sea.









*In the second comic strip we see a man who is also looking distressed, floundering in the sea, and calling out "Help!". Next we see the man looking up into the sky with a smile on his face. Paper money is floating down from the sky. In the final scene we see the man has once again drowned in the sea, with the paper money floating on the surface above him.







*The final cartoon in this series once again shows a distressed person in the sea, crying out "Help!". This time help comes in the form of a gigantic, heavy book that has the title, "Report on Drowning." The report on drowning comes flying down from the sky and the heavy book hits the man on the head, drowning him under the water while the report on drowning floats above him.


*The moral of this cartoon story is clear: *There are too many reports on drowning and not enough life preservers! That is, *Help isn't help if it's not helpful. *Help that is not helpful can actually do harm. *Being helpful requires that professionals ask us what we need. But asking is never enough. Professionals must also listen to what we say. In this way *help becomes something that is co-created between the disabled person and the professional. When help is co-created as an explicit agreement between the professional and the individual, then silencing is avoided.


Pasted from <https://www.patdeegan.com/pat-deegan/lectures/silence>

Mass Shootings

Mass Shootings and a Mental-Health Disgrace

The federal bureaucracy is anti-patient, anti-family and anti-medical care. Reform is essential.

ENLARGE

PHOTO: GETTY IMAGES/ISTOCKPHOTO

By

TIM MURPHY

Oct. 8, 2015 7:24 p.m. ET

279 COMMENTS

These past few months have brimmed with tragedy. Americans are struggling to make sense of horrific acts of mass violence like the August shooting on live television in Roanoke, Va., and last week’s college campus shooting in Roseburg, Ore.

We all know how this plays out in Congress: a moment of silence on the House floor and a fraternal feeling of melancholy when the flag over the Capitol is lowered to half-staff. But that moment of silence will not heal the hearts of those who lost a loved one, and it will not stop the next tragedy. Here and now we need action; we need real change.

That’s why I’ve authored the Helping Families in Mental Health Crisis Act. The bill focuses resources and reform where they are most needed: to foster evidence-based care, fix the shortage of psychiatric hospital beds, empower patients and caregivers under HIPAA privacy laws, and help patients get treatment well before their illness spirals into crisis.

As chairman of the House Oversight and Investigations Subcommittee, I led a congressional investigation into our failed mental-health system after the 2012 Sandy Hook Elementary School shooting. What we found was shocking and disgraceful: a wasteful federal bureaucracy that is anti-patient, anti-family and anti-medical care. The federal government has more than 112 programs that deal with mental health in one way or another, yet a person with serious mental illness is 10 times more likely to be in a prison cell than a psychiatric hospital bed.

In 1955 there were 558,000 inpatient psychiatric beds in the U.S. Today there are fewer than 45,000. The severe shortage is due to the decades-long deinstitutionalization that began in the civil-rights era. But it has been exacerbated by a Medicaid reimbursement rule known as the “institutions for mental diseases exclusion,” which prohibits federal matching payments for inpatient care at psychiatric hospitals with more than 16 beds. My bill moves away from the arbitrary 16-bed cap and establishes a clinical standard for patients with serious mental illness.

We know that families of the mentally ill are the front-line care-delivery team. We also know that those with serious mental illness frequently have chronic diseases like diabetes. Yet federal privacy laws routinely thwart efforts by families to obtain critical information about a sick family member, or even to share that information with the treating physician. This is one reason why the seriously mentally ill die 25 years sooner than the rest of the population. Under my bill, minor adjustments to HIPAA will allow the doctor to share with a known and trusted caregiver the medical diagnosis, prescriptions, and time and place of appointments. Sharing this minimal yet vital information will save lives.

According to the National Institute of Mental Health, those with mental illness in treatment are 15 times less likely to engage in an act of violence than those who go untreated. Many states are adopting court-supervised treatment programs, known as assisted outpatient treatment, for those who, by the very nature of their illness, are unable to voluntarily comply with necessary medical and psychiatric care. A 2005 New York study found that this model reduced rates of imprisonment, homelessness, substance abuse and costly emergency-room treatment for chronically mentally ill participants by upward of 70%. It has also reduced annual Medicaid costs by more than 40% for participants, according to a recent Duke University study. My bill promotes alternatives to long-term inpatient care by helping states fund these innovative approaches to community-based treatment.

Many families who do successfully arrange for care still face federally funded “protection and advocacy” lawyers fighting against their efforts to get their mentally ill loved one to treatment. These lawyers effectively work to get patients out of lifesaving care and abandon them upon release. My bill returns the program to its original function of preventing abuse and neglect of the seriously ill.

This bill also requires psychiatric hospitals to establish clear and effective discharge plans to ensure timely and smooth transitions from the hospital to appropriate post-hospital care and services, emphasizing continuity of care.

It would be impossible to enact meaningful reforms without overhauling the Substance Abuse and Mental Health Services Administration, the relatively obscure federal agency charged with overseeing the lion’s share of mental-health programs. In a scathing reportreleased in February, the Government Accountability Office found that, despite Samhsa and its $3.6 billion annual budget, “coordination related to serious mental illness has been largely absent across the federal government.”

Rather than focus on the millions of Americans with serious mental illnesses such as schizophrenia or bipolar disorder, Samhsa spends billions on “behavioral wellness” programs for those without a mental illness. Incredibly, Samhsa even funds the growing anti-treatment industry, which encourages mental-health patients to stop taking medications.

My bill focuses resources on clinical programs with a proven record of effectiveness, such as the Recovery After Initial Schizophrenia Episode project, an adolescent early intervention program, and the National Child Traumatic Stress Network. The legislation also launches a new early childhood grant program to provide intensive services for children with serious emotional disturbances in an educational setting.

A cornerstone of my reform package is new executive branch leadership. By establishing a new position, an assistant secretary for mental health and substance use disorders, we can ensure that recipients of federal mental-health block grants apply evidence-based models of care, and that dollars are optimized to help patients rather than the bureaucracy.

The Helping Families in Mental Health Crisis Act has been a grass-roots effort. But despite garnering more than 130 bipartisan co-sponsors, as well as support from families and almost every major police, sheriff and mental-health organization in the country, the bill is still blocked by a vocal minority in Congress protecting the failed status quo. No more moments of silence. The time to act is now.

Mr. Murphy, a Republican, is a U.S. representative from Pennsylvania and a psychologist in the Navy Reserve Medical Service Corps.

DEBATE ON TREATMENT CHOICE

Should Forced Medication be a Treatment Option
in Patients with Schizophrenia?





PRO E. Fuller Torrey, MD President, Treatment Advocacy Center, Arlington, Virginia Professor of Psychiatry, Uniformed Services, University of Health Sciences, Bethesda, Maryland Executive Director, Stanley Foundation Research Programs, Bethesda, Maryland There are scientific, humane, public protection, and practical reasons why the involuntary treatment of individuals with severe mental illness (SMI) is sometimes necessary. Scientifically, it has been shown in many recent studies that 40% to 50% of individuals with schizophrenia and bipolar disorder have an impaired awareness of their illness (also called impaired insight).1 Their illness has impaired the function of the prefrontal cortex, which is the part of the brain that is used for self-reflection and to appreciate one's own needs. Thus, many people with SMI are similar to individuals who have suffered strokes that have impaired their self-awareness (e.g., denial that one leg is paralyzed) or individuals in the early stages of Alzheimer's disease. On humane grounds, the failure to treat such individuals often leads to homelessness or incarceration on misdemeanor charges. The streets, public shelters, and jails are overflowing with such individuals. On humane grounds alone, is it fair to leave those who are not aware of their own illness living in the streets and eating out of garbage cans, as over 25% of the population with severe mental illness do?2 The issue of public protection arises because a small number of individuals with SMI who are not being treated become dangerous, usually because of their delusions. There have been at least 25 studies in the past 15 years that have reported that untreated individuals with SMI are significantly more dangerous than the general population. A 1994 Department of Justice study reported that 4.3% of all homicides (approximately 1,000 per year) are committed by individuals with a history of mental illness;3 most of these homicides would not happen if these individuals were being treated. In terms of public safety, an individual with schizophrenic or bipolar disorder who is not being treated is similar to a person with untreated epilepsy who is driving a car, or a person with untreated active tuberculosis who is sitting next to you in a movie theater; in both cases, we require that these individuals receive treatment. Finally, involuntary treatment should be used when necessary because-on practical grounds-it works. In New Hampshire, for example, the use of conditional release was found to improve medication compliance by a factor of three and to reduce episodes of violence to one-third their previous level.4 Outpatient commitment has similarly been shown to markedly reduce the readmission rates in studies in Ohio, Iowa, North Carolina, Arizona, and the District of Columbia. Objections to involuntary treatment are ill-founded. It is claimed, for example, that if the mental health services are attractive enough, the patients will seek them out. Individuals with no awareness of their illness will never seek out services, because they do not believe they are sick. Others claim that involuntary treatment drives patients away. in fact, studies have shown quite the opposite. In one study of patients who had been involuntarily medicated, 71% later agreed with the following statement: "If I become ill again and require medication, I believe it should be given to me even if I don't want it at the time."5 In another study, 60% of patients who had been forcibly medicated agreed retrospectively that it was a good idea.6 Others oppose involuntary treatment because of its potential for abuse, evoking memories of Nazi Germany or Stalinist Russia. Of course, treatment can be abused; however, it need not be if a proper system of checks and balances are [sic] put in place. Given that the United States has over 900,000 lawyers, there is no reason that these precautions cannot be taken. Finally, civil libertarians decry involuntary treatment as an infringement of the person's fundamental rights. One must ask, however, whether a person with schizophrenia or bipolar disorder who is living on the streets is truly free in any meaningful sense. The final word on this belongs to Herschel Hardin, who for 9 years was a director of the British Columbia Civil Liberties Association: "The opposition to involuntary committal and treatment betrays a profound understanding of the principle of civil liberties. Medication can free victims from their illness-free them from the Bastille of their psychoses-and restore their dignity, their free will, and the meaningful exercise of their liberties."7 References 1. Amador X.F., David A.S., eds. Insight and Psychosis. Oxford, New York, NY, 1998. 2. Gelberg, L., and Linn, L.S. Hosp. Community Psychiatry, 1988;39:510-516. 3. Dawson, J.M. Langan, PA. "Murder in Families," Bureau of Justice Statistics Special Report. Office of Justice Programs, U.S. Department of Justice, Washington, DC, 1988. 4. O'Keefe, C., et. al. J Nerv Ment Dis 1997;185:409-411. 5. Schwartz, H., et. al. Bull Am Acad Psychiatry Law. 1996;24:513-524. 7. Hardin, H. "Uncivil Liberties." Vancouver Sun, July 22, 1993. Rebuttal to the Article by Ms. Chamberlin By E. Fuller Torrey, MD Ms. Chamberlin's contribution suggests that she may be woefully out of touch with scientific literature in this field. 1) "Schizophrenia" is more than a "clinical impression." It is a clearly established, biologically based brain dysfunction. There are literally hundreds of studies that have shown that individuals with schizophrenia differ from normal controls in both brain structure (e.g., ventricular enlargement, loss of hippocampal volume, decreased gray matter) and brain function (e.g., neurochemically, neurologically, neurophysically). Schizophrenia is no more a "clinical impression" than is Parkinson's disease. 2) She is also incorrect in stating that antipsychotic drugs may cause the brain changes cited. There are studies showing, for example, that ventricular enlargement,1 loss of hippocampal volume2 and decreased gray matter occur in individuals with schizophrenia who have never been treated. 3) She cites one non-peer-reviewed study alleging that "more than half" of patients "avoided voluntary treatment...because of a fear of being subjected to involuntary treatment." Almost every peer-reviewed article on this question has reported that the majority of involuntarily treated patients retrospectively acknowledge its necessity. 4) While ignoring multiple studies that have proven the efficacy of outpatient commitment, she cites the New York City Bellevue Hospital study as having found "no difference between the group that received enhanced outpatient services without compulsion, and the group that received the services under court order." In fact, the group under court order was hospitalized for a median of 43 days in the following 11 months compared with 101 days for the group not under court order. This difference just missed being statistically significant at the P=0.05 level of significance but certainly supports the other studies that have proven the efficacy of outpatient commitment. 5) She alleges that episodes of violence by seriously mentally ill individuals are "rare." If the person is being treated, that is true. For those individuals who are not being treated, multiple studies have shown that this is not true. For example, the families of mentally ill individuals who reported that 11% of their seriously ill relatives had harmed another person in the preceding year do not consider this "rare."4 And the relatives of 133 outpatients of which "13% of the study group were characteristically violent" do not consider this "rare."5 I would suggest that Ms. Chamberlin spend some time in a public shelter filled with untreated seriously mentally ill individuals to establish for herself just how "rare" violent episodes are. References 1.Knable, M.B., Kleinman, J.E., and Weinberger, D.R. Textbook of Psychopharmacology, 2nd edition. Schatzberg A.F., and Nemroff, C.B., eds. APA Press, Washington, DC, 1998. 2.Velskoulis, D., et. al. Arch Gen Psychiatry 1999;56:133-141. 3.Zipursky, R.D., et. al. Arch Gen Psychiatry 1998;55:540-546. 4.Steinwachs, D.M., Kasper, J.D., and Skinner, E.A. Family Perspectives on Meeting the Needs for Care of Severely Mentally Ill Relatives: A National Survey. National Alliance for the Mentally Ill, Arlington, VA, 1992:25-30. 5.Bartels, J., et. al. Schizophr Bull 1991;17:163-171.

CON Judi Chamberlin Senior Associate, National Empowerment Center, Lawrence, Massachusetts The question posed in this debate is not purely a medical one; therefore, it is appropriate that one of the discussants is not a doctor, but a legal rights advocate. The issue here is not the use of psychiatric medications per se, but whether doctors should be permitted to force medications on unwilling recipients. Although the question refers to "patients," it is clear that the people under discussion have chose not to be patients. The question might better be framed as, "Should psychiatrists be able to define people as 'patients' against their will?" making it clearer that the issues under discussion are more about legal rights and ethics than about medicine. There are no medical tests that clearly separate those with the diagnosis from those without it. Sarbin, in an analysis of 30 years of psychological research, concluded that it "has produced no marker that would establish the validity of the schizophrenia disorder."1 "Schizophrenia" remains a clinical impression, and one that is heavily influenced by such non-medical factors as race and social class.2 Again, these facts point to the necessity for enlarging this debate beyond purely medical considerations. The question also contains certain assumptions that must be carefully scrutinized, specifically (1) that medication improves outcome, and (2) that force is an efficacious way of medicating objecting individuals. With regard to outcome, there is little objective evidence that it is improved by neuroleptic drugs. In fact, there has been little change in outcomes of people diagnosed with serious mental illness over the past 100 years, despite claims that neuroleptic drugs are specific treatments.3 Further, there is growing evidence that neuroleptics themselves are responsible for brain changes that are often pointed to as evidence of schizophrenic deterioration.4,5 With regard to efficacy, the largest single study of out-patient commitment, the New York City Involuntary Out-Patient Commitment Program, found that there was no difference between groups that received enhanced out-patient services without compulsion, and the group that received such services under court order.6 Both groups were equal in terms of rehospitalization, drop-out rates, and outcome measures. What this study indicates is that the key variable is enhanced services, not compulsion. Services like one-to-one counseling, support groups, and help in finding housing and jobs have been shown repeatedly7 to benefit people diagnosed with serious mental illness. the irony is that every dollar spent on surveillance and control is a dollar that is not available to fund services that research shows really make a difference. Campbell and Shraiber8 found that slightly more than half of a group of Californians diagnosed with serious mental illness avoided voluntary treatment at times when they believed it might benefit them because of a fear of being subjected to involuntary treatment. Kasper, Hoge, Feucht-Haviar, Cortina, and Cohen9 studied treatment refusers in Virginia and concluded that "these patients suffered more morbidity than compliant patients. This study suggests that the negative sequelae of of an in-hospital treatment refusal cannot be eliminated by rapid treatment." Further, "refusers were prescribed higher doses of anti-psychotic medications than were compliant patients," and were found to have "negative attitudes toward past, present, and future treatment at the time of admission," Coercive treatment thus creates a negative cycle, calling for the use of ever more coercion. The usual justification for forced treatment is violence on the part of people with serious mental illness. However, not only is violence rare, but according to the American Psychiatric Association, "Psychiatrists have no special knowledge or ability with which to predict dangerous behavior." Studies have shown that "even with patients in which there is a history of violent acts, predictions of future violence will be wrong for two out of every three patients."10 Further, although the usual justification for forced treatment is lack of insight and the unwillingness of subjects to seek treatment voluntarily, it is instructive to note that several of the individuals involved in recent highly publicized incidents of violence committed by former patients had been engaged in fruitless efforts to get treatment in the weeks preceding their criminal acts, visiting emergency rooms and clinics, and being repeatedly turned away. Rather than lacking insight, these individuals sensed their own emotional deterioration, which was apparently invisible to those clinicians that came into contact with. Under all of these circumstances, it is clear that calls for expanded involuntary treatment benefit neither those who might be subjected to it, those who are traumatized and driven away from voluntary help, nor the public at large, whose safety is not improved, and whose tax dollars will go toward making the mental health system even less able to offer the kinds of voluntary programs that enhance community integration. References 1. Sarbin, T.R. J Mind Behavior. 1990:259-283. 2. Hollingshead, A.B., and Redlich, F.C. Social Class and Mental Illness. John Wiley: New York, NY, 1958. 3. Hegarty, J., et. al. Am J Psychiatry 1994;151:1409-1416. 4. Chakos, M.H., et. al. Am J Psychiatry 1994;151:1430-1436 5. Gur, R.E. et. al. Am J Psychiatry 1998;155:1711. 6. "Final Report: Research Study of the New York City Involuntary Outpatient Commitment Pilot Program." Policy Research Associates, Delmar, NY, 1998. 7. Anthony, W.A., Cohen, and M., Parkas, M. Psychiatric Rehabilitation. Boston University Center for Psychiatric Rehabilitation, Boston, MA, 1991. 8. Campbell, J. and Schraiber, R. In Pursuit of Wellness: The Well-Being Project. California Department of Mental Health, Sacramento, CA, 1989. 9. Kasper, J.A., et. al. Am J Psychiatry 1997;154:483-489. 10. American Psychiatric Association. "Statement on the Prediction of Dangerousness." Washington, DC, 1983. Rebuttal to the Article by Dr. Torrey By Judi Chamberlin The arguments raised by Dr. Torrey are primarily ethical and moral ones, in which he proposes that involuntary outpatient commitment (IOC) is humane to the individual and beneficial to society. In contrast, I believe that IOC would make society less humane and more unjust. First, as I argued earlier, there is no reliable way to diagnose severe mental illness (SMI); therefore, people would lose their right to choose or refuse treatment based on vague diagnostic criteria. This would create a loosely defined group of citizens who have fewer rights than others. We know from both history and current public policy that little money or attention is given to people diagnosed as mentally ill. The deinstitutionalization decried by Dr. Torrey was fueled, in part, by repeated revelations of horrific conditions inside state mental institutions; there is no reason to believe that wide-scale IOC would be any less horrific. Dr. Torrey also makes the logical mistake of generalizing from the minority of individuals with SMI who are lawbreakers, and extending his draconian prescriptions to the much larger number of law-abiding, productive citizens who, despite their diagnoses, function well in society with the treatments and/or supports of their choice. By his logic, all members of racial minority groups, for example, should be subjected to restrictions on their freedom because some members of the group are lawbreakers. Such a policy would result in less freedom for all. Another logical flaw in Dr. Torrey's argument is the claim that most murders committed by individuals with SMI would not happen if these individuals were receiving treatment, which is an unprovable assertion. Further, even the elimination of the 1,000 murders a year cited by Dr. Torrey would make barely a blip in crime statistics. The reasons why the United States has one of the highest murder rates in the world has far more to do with the easy availability of guns and other social factors than with mental illness. I, too, will close with a quote and invite readers to reflect on society and morality: "Of all tyrannies a tyranny sincerely exercised for the good of its victims may be the most oppressive. It may be better to live under robber barons than under omnipotent, moral busybodies. The robber baron's cruelty may sometimes sleep, his cupidity may at some point be satiated; but those who torment us for our own good will torment us without end for they do so with the approval of their own conscience.... To be "cured" against one's will and cured of states which we may not regard as disease is to be put on a level with those who have not yet reached the age of reason."1 References 1. Lewis, C.S. "The Humanitarian Theory of Punishment," God in the Dock. William B. Berdmans Publishing Company, Grand Rapids, MI, 1994.



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Remember My Name: Reflections on Spirituality in Individual and Collective Recovery

By: Patricia E. Deegan PhD October 2004

Copyright © Pat Deegan, PhD & Associates, LLC.

For permission to distribute please contact us.

A number of years ago, I was out walking on the grounds of Danvers State Hospital. It was late March, that time of year when it is not quite winter and not quite spring. The ground was still frozen beneath my feet, but the wind promised a warmth-to-come as it rustled through the leafless branches of the trees. I was looking for a cemetery. I was looking for the place where former patients of the state hospital were buried, when family or friends did not come to claim their bodies.You would think a state hospital cemetery would be easy enough to find. But I had been wandering the fields and scrambling through the thickets and woods surrounding that closed state hospital on four separate occasions, and still I could not find the cemetery. I knew it was there somewhere. I had read the annual reports saying five patients had died and were buried on the asylum grounds in 1878, the year the hospital opened. Six more had died and were buried the next year, ten more the following year, and so on. I had even asked former hospital staff, "Where is the cemetery?" But no one knew. "How the heck do you lose a cemetery?" I asked myself as I continued my search. And later I learned, you don't lose a cemetery. A state hospital cemetery has to be disappeared.

Eventually, I came upon a nearly impenetrable gauntlet of briars and thickets swarming over a crumbling stonewall. Inching my way forward, through the briars and over the stonewall, I spotted a small, round, concrete marker lying flush with the ground. The number 115 was pressed into the concrete marker.

I was puzzled at first, thinking the marker, which was only 3 inches in diameter, might be an old boundary marker of some type. I moved closer, cleared away some debris and knelt down next to number 115 to get a better look. That's when, through the brambles, I saw another marker on my left, number 114. And two paces to the right, number 116. I knew, then, these were consecutive markers, and I was kneeling in the forgotten state hospital cemetery. Who was number 115? Why was number 115 buried without a name? How did number 115 get disappeared in this way and why? And how many more people were lying forgotten beneath this tangle of snaking bittersweet vines and briars?

I photographed the markers and the jungle covering them, and then set about the task of finding out who number 115 was. I began by bringing together a large group of former patients of the hospital. We looked at the photographs of the numbered markers and decided, on the spot, to dedicate ourselves to remembering the names of those buried there. There was no debating, only a certainty that replacing the numbered markers with headstones engraved with proper names was the right thing to do. We intuited that we must do this for ourselves, for the ones forgotten and for the ones who will be diagnosed with psychiatric disorders in the future. In essence, at that first meeting, we declared kinship with those who, like us, had been patients at the State Hospital. It was a kinship born, not of blood, but of intention and recognition of a common experience. It was said that those buried beneath the numbered markers had no family. So we stood up and said, "We are their family. We are their mothers, fathers, sisters and brothers. We will remember their names."

The very first thing we did was go up to the cemetery. We cleared away a little space in the brambles so that a couple of the markers closest to the stonewall were visible. Then we organized a demonstration, and we walked, nearly a hundred of us, across the tired agricultural fields of the old asylum farm, toward the small clearing. Each person carried a flower, a single blossom. One at time, we placed our flowers on marker number 115, as we dedicated ourselves to recovering that cemetery. In this way, we blessed that forsaken place. To us, this blessing was the most important thing of all. With our tears anointing that hard ground, we blessed the cemetery, just as it was. We did not wait to clean it all up. We did not wait for it to be pretty. We did not wait for the briars to be cleared and the memorial shrubs to be planted. Instead, we blessed that place because, having lived the journey of recovery ourselves, we knew that God dwells even in the dirt.

It is tempting to think of recovery as an Easter Sunday type of narrative. Images of light, resurrection, rebirth, spring, and rising come easily to mind when we think about recovery. But these Easter images do not tell of the place from whence recovery begins. Whether recovering a forgotten cemetery, or recovering a life after being diagnosed with a psychiatric disorder, the place where the journey begins is closer to a Holy Saturday narrative than an Easter one. Let me explain.

My faith tradition is Christianity. That is the prism through which I approach the Light. In my faith tradition we believe Jesus is God. On Good Friday, we remember the crucifixion of Jesus and the placement of his body into a stone tomb. On Easter Sunday, we celebrate the resurrection of Jesus from that tomb. But between death and resurrection, there is something else. There is Holy Saturday. In my faith tradition, we believe God descended into hell on Holy Saturday, before rising from the dead on Easter Sunday. In other words, we believe that when laid in a tomb, God began a descent.

Imagine God sinking, permeating, descending, beneath, below, and through each and every crevasse of human possibility. God descending into each and every human hell. God descending into the shriveled belly of a starving child and saying, "I am here, too". God descending into the tangled forgetfulness of Alzheimer's and saying, "I am here, too". God descending into forgotten lives in the farthest reaches of the back wards and saying, ‘I am here, too". God descending into the antiseptic stench of the nursing home and saying, "I am here, too". God descending into the whispered despair of a suicide attempt and saying, "I am here, too".

The Holy Saturday experience is of God descending into every conceivable human hell and saying, "Even here, I have passed through. Even here, I am." Because of God's descent, every human hell is already sanctified. And because God is there, every tomb is blessed with the possibility of becoming a womb.

The Holy Saturday experience is a discovery that the tomb can also be a womb. The tomb can be a place of death, but it can also be hallowed ground from which something new can be born. That is why we blessed that state hospital cemetery, before we had even begun to clean it up. God was in that dirt, and we knew it because we had experienced a similar grace in our own lives.

Those of us who have lived the journey of recovery know something of what it means to be to be laid in a tomb or to be buried alive. We know what it means to have our individuality buried beneath a diagnosis. We know what it means to be called a schizophrenic or a bi-polar or a borderline, instead of being called by our name. We know what it means to be expected to live our diagnosis, rather than our lives. The former patients in the state hospital cemetery were stripped of their names and buried beneath numbers. Similarly, even when we are still alive our individuality is often buried beneath the carefully calibrated numbers of the Diagnostic and Statistical Manual of the American Psychiatric Association.

Many of us also know what it means to be buried under an avalanche of psychiatric drugs. We know what it means to have the treatment be worse than the disorder. We know what it means to be in a chemical tomb, where we feel so drugged we are neither alive nor dead; when we are so drugged that our bodies are stiff and slow and lifeless; when our faces become expressionless masks; when our eyes stop dancing and, instead, glaze over into a petrified stare; when our passion is neutered under powerful pharmaceuticals; and when we are, quite literally, disappeared within a chemical coma. And just like the people who had been buried in a segregated cemetery, many of us know what it means to be buried away in segregated mental health programs, living impoverished lives in the artificial world of the human services, where the only people with you are those who are paid to be with you: a very poor substitute for real life lived in freedom, in fully integrated settings.

Yes, we know something of the tomb. But those of us who have experienced recovery also know the tomb can be a womb. I remember the first time I met God in the tomb. I was in a mental hospital. I was laid out on a cold white sheet, in a Thorazine induced exhaustion. I was seventeen years old, diagnosed with schizophrenia and had been lying on that hospital bed for three days. My body was stiff and heavy from the Thorazine, which had left my tongue cracked and dried and swollen within my parched mouth. A hospital attendant shook my bed to awaken me and helped to prop me up. He said the chaplain had come by to administer the sacrament of communion. I managed to receive the blessing, and as I began to slump back into unconsciousness, a terrible coldness came upon me. I was so afraid! I was afraid because I was so far away and all alone. I felt so desolate, so erased, so utterly disappeared and buried, that no human hand could possibly reach me. And as the drugged darkness began to swallow me away, I remember experiencing God's presence and saying, "It's just you and me. Just you and me God." And that was all. But that was enough.

To find that God was already there; to find that God was already dwelling in that tomb; to find that in the place-where-no-human-hands-could-reach-me, there, already, was my God with the hands to catch my collapse, now that was grace. The Psalmist bursts into praise at such revelations: "Where can I go from your spirit? From your presence where can I flee? If I go up to the heavens, you are there; If I sink to the nether world, you are present there." (Psalm 139:7-10). But I was no Psalmist. I was just a teenager diagnosed with schizophrenia, passing out on a hospital bed. Yet this discovery that God was already present in my suffering, was the experiential foundation of my recovery.

The discovery that God-was-with-me meant I was not forsaken. It meant even when the professionals got it wrong or even when the limits of human helping had been reached, there was still hope for me. No matter how scary, how forlorn, how afraid, how psychotic, how depressed, anxious, panicked, weary, or disorganized I became, God was with me. And importantly, this God had no agenda to change me; no treatment plan for me; no magic bullet for me; no miracle to work on me; and no magic spells to make me normal again. This God simply is, was and always had been there, in my madness, in my pain, in my despair. There's something deeply healing in that. For me, I think it was just the knowledge that I could never truly get lost if God was always, already there with me.

It was deeply healing for me to discover I could never truly get lost, if God was always, already there with me. That knowledge was healing because it promised that schizophrenia was not about being lost. Rather, schizophrenia could be a passageway, and God was already with me as I began to move through it. It meant schizophrenia could be a passageway and not a destination. It meant psychosis was hallowed ground, blessed by God's presence. Understand I am not saying I saw the pathway to recovery clearly laid out before me, in some type of divine revelation. Rather, I experienced a certainty that I could never really be lost, if the Alpha and the Omega, the Beginning and the End, the Path towards which all paths lead, was already walking by my side.

Of course, the high priests of psychiatric orthodoxy would accuse me of heresy at this point. They would say I am terribly old fashioned and unenlightened. They would tell me schizophrenia is a no-fault neurobiological brain disorder. They would say I am naïve to think of psychiatric disorder as a passage already permeated with the presence of God. They would teach me that schizophrenia can only be understood through the microscope or latest brain imaging technology. They would teach me that in all the thousands of studies which have been done, God has never once been seen racing between dopamine receptors.

Yes, they would say I am a heretic, because the psychiatric world-view is a materialist world-view, reifying neurobiology, reducing human experience to electro-chemical events, and rejecting the notion of God, leaving the only deity in the consulting room to be the psychiatrist himself! And they would be right. I am a heretic.

I am a heretic because I know something is terribly wrong when a person pours their pain out to a psychiatrist and the psychiatrist responds, "Looks like we need to tweak your serotonin." I am a heretic because I know something is terribly wrong when a person is angry and upset, and the first thing their casemanager says is, "Have you taken your medications today?" I am a heretic because I know recovery is about changing our lives, not our biochemistry.

When we believe we can explain the complexity of human experience through the study of neuronal activity, then we are committing a type of idolatry. We end up worshipping false gods. Of course, there can be a place for medications for some people in the recovery process. But I fear we can get so focused on mere chemistry, that we miss the true alchemy. We become so fascinated with the mechanics of neurotransmitters, that we miss the upsurge of human resilience, as people begin their recovery.

I refuse to worship in the cult of neuro-biology. Like those practitioners in person-centered medicine, I understand disease is a theoretical construct, through which physicians attempt to explain patient's problems (Stewart et al. 2003). The disease interpretation does not tell the whole story. The psychiatrist's disease abstraction, or pathography, can never tell the story of the human spirit's encounter with adversity. That is a story which can only be told by the survivor and witnessed by those who are willing to listen. The lived experience of distress and recovery tell the tale of the resilient self, the story of strength in vulnerability and how, for many of us, distress is hallowed ground upon which one meets God.

Distress, even the distress associated with psychosis, can be hallowed ground upon which one can meet God and receive spiritual teaching. When we set aside neurobiological reductionism, then it is conceivable that during the passage that is madness, during that passage of tomb becoming womb, those of us who are diagnosed can have authentic encounters with God. These spiritual teachings can help to guide and encourage the healing process that is recovery. Let me give you an example from my own experience.

I was in a very difficult, emotionally turbulent passage, punctuated with periods of psychosis. The anguish of it seemed endless, and I had lost all sense of time. I remember pressing my body against the concrete wall in the corridor of the mental institution as wave upon wave of tormenting voices washed over me. It felt like I was in a hurricane. In the midst of it, I heard a voice that was different from the tormenting voices. This voice was deeply calm and steady. It was the voice of God, and God said, "You are the flyer of the kite." And then the voice was gone.

Time passed and I kept repeating what I had heard, "I am the flyer of the kite." When I repeated this phrase, I had the image of a smaller me, standing deep down in the center of me. The smaller me held a ball of string attached to a kite. The kite flyer was looking up at the kite. To my surprise, the kite looked like me also. It whirled and snagged and dove and flung around in the wild winds. But all the while, the flyer of the kite held steady and still, looking up at the plunging and racing kite.

"I am the flyer of the kite", I repeated again. And, slowly, I began to understand the lesson. "I have always thought I was just the kite. But God says I am the flyer of the kite. So, even though the kite may dive and hurl about in the winds of pain and psychosis, I remain on the ground, because I am the flyer of the kite. I remain. I will be here when the winds roar, and I will be here when the winds are calm. I am here today, and I will be here tomorrow. There is a tomorrow, because I am more than the kite. I am the flyer of the kite."

The notes in my chart that day probably said I was floridly psychotic. However, for me, that day was an epiphany. The lesson I learned on that day was a lesson I relearned, over and over again, in my recovery. Basically, I learned there was a deeper part of me, that was centered and unmoving and steady and constant and calm. Without this deeper part of myself, the wind could easily blow me away. This deeper me learned not to over identify with the good times or the bad times.

Like the kite blasting around on a windy day, my recovery often meant having a difficult time, with lots of ups and downs, pain and suffering, setbacks and bad days. But God taught me there was more to me than these ups and downs. Deep down inside, no matter how rough things got, there was a still, quiet place within me that held steady and that survived. On some days, recovery, was just about learning to ride the tumultuous winds, while hanging tightly to the kite string, until the storm passed. At other times in my recovery, I needed my therapist or a trusted friend to hold the string, until I could reconnect with the flyer of the kite within me.

If mental health professionals are to support the spirituality of people in the recovery process, then it is important to remain open to the possibility that people receive authentic spiritual teachings during periods of what gets called psychosis or psychiatric disorder. These spiritual teachings can provide a resting place for the weary; nourishment for the hungry; meaning for those in despair and a compass for those who are trying to navigate the passage of recovery. Simply allowing a client to discuss the spiritual teaching, while listening respectfully, can be healing. If the client is willing, exploring the teaching, applying it to daily recovery, and reminding the client of the teaching when it's been forgotten can be helpful.

It is imperative that professionals not invalidate spiritual teachings received during psychosis or severe emotional distress. It is important not to dismiss such teachings as delusions. Do not interpret them as symptoms of disordered minds and then ask for an increase in psychotropic medications. If, as a mental health professional, you feel uncomfortable listening to spiritual teachings, because you are not an expert in such matters, own this personal limitation and share it respectfully with clients. Clients are then free to find other people who are more receptive to talking about spiritual teachings received during periods of altered consciousness and extreme emotional distress.

In addition, if mental health professionals are to develop an understanding of the role of spirituality in recovery from psychiatric disorders, they must be prepared to explore the depth and breadth of their own spirituality. It is not enough to study the spirituality of people diagnosed with psychiatric disorders, as if our spirituality were somehow different from yours. This objectifying, non-reflexive perspective will not do. If professionals are to support people in recovery, they must live in hope and understand no one is beyond hope. No one is completely lost. No one is chronic. All are of value. No one is a waste of your time. In other words, professionals must be willing to look into the places where human hands can not reach and abide in faith that there, too, God dwells. And that is not easy.

We live in a culture where professionals are trained to and rewarded for artfully disappearing disturbing people. Those people buried in the state hospital cemetery had been disappeared under numbered markers. In a similar way, professionals can feel pressured to disappear disturbing people beneath a diagnosis and to relate to diseases and disorders rather than people who are in deep pain. Professionals can feel tempted to disappear disturbing people through a mind-numbing array of psychiatric pharmaceuticals, which make us quiet, compliant and manageable, rather than to hear our rage and despair. Professionals can find it easier to disappear people by segregating us in programs, rather than inviting us to participate in the full cultural and economic life of the community. It can be easier to send us to the Salvation Army for Thanksgiving dinner, than to invite us into your homes and families.

Professionals must dare challenge the depth and breadth of their own spirituality by looking into the face of the person in pain and resisting the urge to disappear that person by referring them to another agency. Professionals must dare to be pierced by the unanswered cry for justice in the lives of people who have been sexually abused, physically battered, emotionally crushed, and resist the urge to disappear them by creating program rules that exclude such people and make the work easier.

Being willing to test the depth and breadth of your own spirituality means professionals must be willing to bear witness to human anguish and not drug it away. Professionals must do more than teach a person the skills needed to get up in the morning. They must also dare to help us address the deeper question: why get up at all? (Nerney 2004). Professionals must avoid pride and recognize they do not cure. Putting their own spirituality on the line means professionals must admit they are not God and do not direct the recovery process. It means professionals must surrender the privilege of presenting themselves as being above or beyond human distress, and must allow their own hearts to be torn asunder in love and compassion for those they seek to help.

In the early years of my recovery, I did not know that supporting people in their recovery meant I would have to gradually become willing to have my own heart torn asunder in love and compassion for them. I thought becoming a professional helper meant becoming very nearly perfect. I thought becoming a professional helper meant becoming strong, invincible, invulnerable and above all, utterly sane. Let me share a bit about that story with you.

Early on in my recovery, I experienced an important turning point. It occurred when I was eighteen years old. My psychiatrist told me I had chronic schizophrenia and I would never be well. He said I would be sick for the rest of my life and the best I could do was avoid stress and cope. Something in me fought back against his prognosis of doom. And as I stood outside his office, I remember rejecting the chronic mental patient life-plan and thinking, "I will become Dr. Deegan, and then I will change the mental health system so no ever gets hurt in it again." That became my survivor's mission. That became the project around which I organized my recovery.

My goal was not entirely altruistic. From my vantage point, at 18 years old, becoming a psychologist was attractive, in part because it meant I would be powerful and rich. And, even more importantly, I thought being a psychologist meant I would be certifiably sane. I really thought psychiatrists and psychologists were utterly sane and that by becoming a card-carrying member of that elite establishment, I would once and for all put psychosis behind me and never be a mental patient again. I really thought you had to be completely well in order to help other people. And so I figured I would become a doctor, and my job would be to help "them". However, in time, I learned my vocation was not to help them. Rather, I learned that I was one of them. My vocation was not to reach down, from some exalted and lofty place, to help the poor unfortunates. Rather, my vocation was to reach across and to share my hope for recovery with others, as they shared their hope with me.

Recovery did not mean becoming powerful, strong and invulnerable. Instead, my recovery has been marked by an ever-deepening acceptance of my vulnerability and of the God who is always walking with me. Walking into recovery has meant trusting that when my heart breaks open, yet again, God works through that wound to deepen my capacity to love. That's what it means to be a wounded healer.

I believe only the wounded healer is available to walk with people into the mystery that is recovery. And this is the great secret of the professions. I know you did not come to this work because the pay is fabulous and the prestige is irresistible. Frankly, there are easier ways to make a living than working in mental health. I believe most of you came to this work because something in you knows about being wounded. Somewhere in your life, you have encountered adversity, and you did not succumb. Somewhere in your life, you have been touched by suffering – either your own or that of others – and you have experienced that what, at first, seems like a tomb, has the potential to be transformed into a womb, from which something new can emerge.

We come to this work, not because we are strong, but because we have experienced our own weakness, our own vulnerability, and the cry that dwells in our own hearts. We come to this work because we are spiritually alive and know something of grace and healing, because we have lived it. We come to this work because we are wounded healers. This is the common ground of the humanity we share with people with disabilities.

Because we stand on the common ground of our shared humanity, we are all related. Ultimately, we are all knit together into one intricate fabric. The recovery of one ultimately depends on the recovery of all. It is not enough to speak of individual recovery. The exploration of spirituality in mental health recovery requires that we also surrender ourselves to the work of collective recovery and collective healing.

There are rends and tears in the fabric of our shared humanity. There are places where the inhuman and the inhumane have erupted into the human services; ripping the common ground from beneath our feet; rending the fabric that weaves us together; and dividing us into the human and the subhuman, the able and the disabled, the wanted and the unwanted, the eaters and the useless eaters, the saved and the damned, the whole and the unwhole, the worthy and the worthless; the well and the sick; the high functioning and the low functioning; the sane and the crazy; the providers and the consumers; the helpers and the helpless.

The tears in the fabric of humanity require recovery and healing. That is why we gathered on a bright autumn day, nearly five years after having discovered and blessed the abandoned cemetery at the state hospital in Danvers Massachusetts. Nearly two hundred of us stood in the field outside the now restored cemetery. We were consumers, psychiatric survivors and ex-patients, mental health officials, professionals, townsfolk, family members, clergy, government officials, former hospital employees, people from the media and even relatives of some of the people buried in the cemetery. We gathered together, on the common ground of the restored cemetery, to finally speak the names of the 678 people who had once been buried beneath numbers but now lay with dignity under proper headstones.

One by one, former patients of the hospital came before the hushed crowd and slowly read each and every name. Frank Lawrence. Clarissa A. King. Mary Leo. It took over an hour to read every name, but we did it. Gracie Josephine Withington. Carmine Pelosi. Lizzie Burns. Raffaelo Appesino. Ferdinand Filisse. Olaf Hokinson. John Wesolowski. Potop Ilchuk. William Pittsley. And as I sat there with my eyes closed, listening, it was as if each and every name became a bird, rising up on the breath, free at last, rising up and up into the blue sky to join the autumnal migrations. Mary Ann Swift. Araminta Harris. Frank Reo. Stillborn Baby Dornfield. Oliver B. Hobbs. Sarah Cox. A tear ran down my face as the names of those buried beneath numbers were now finally unburied and set free at last. The names remembered, spoken aloud, rising like birds, flocking, migrating, and then mingling with the names of so many others who had been similarly buried beneath numbers in other state hospital cemeteries across the United States.

You see, former patients all across the United States had begun to hear about what we were doing. Guided by the same spiritual wisdom, former patients in over 30 states had begun to look for the forgotten state hospital cemeteries in their states. We found 20,000 former patients disappeared beneath numbered markers and buried in racially segregated cemeteries at Central State Hospital in Georgia. Former patients blessed that resting place and raised an angel to watch over it so that it could never be disappeared again. And we found four thousand disappeared at New Mexico State Hospital. Fidel Lopez. R. Eguchi. Francis Thornton. Mary Romero Encinas. And at the historically, racially segregated hospitals at Crownsville, Maryland and Goldsboro, North Carolina we remembered the names of thousands, including Anna May Brouglon, Fannie Farmer, Bette Harrington and Walter Riley. In Hawaii, we remembered the names of Lau Do, Sang Chun, John Doe, James Doe and Frank Rivera. At the Hiawatha Asylum for Insane Indians in Canton, South Dakota, we remembered the names of Silas Hawk, Edith Standing Bear, Kay-Ge-Gay-Aush-Eak, Robert Brings Plenty, Long Time Owl Woman, Yells At Night, Enas-Pah and Baby Ruth Enas-Pah. At the state hospital in Topeka, Kansas, we remembered Franz Federick, Edward Petrowsky, Augustus Urban, and Sarah Jane White.

In August of 2000, a psychiatrist stood before 1200 mental health consumers and made a formal apology. His name was Thomas Hester, the medical director for mental health services in the state of Georgia. And as people wept, overcome with sadness, joy, relief, and justice, Dr. Hester said:

"I am here today to signal the beginning of making amends through two approaches. One is to humbly say to you that I am sorry. I am sorry on behalf of the State of Georgia. I am sorry on behalf of institutions who in the past, despite whatever intentions they may have had, have trampled human spirits, having not allowed recovery to flame. I'm sorry that we've over-used medications. I am sorry that we have over-used intrusive measures like restraint and seclusion. But in addition to a public apology, another part of recovery is going into action. Making amends is not enough. It is not enough just to admit the exact nature of your wrongs and apologize. And so today I am committing, on behalf of the State of George and the Facility (state hospital) System, to take...action." (Hester 2000)

Some people said to us, why are you wasting your time on the dead when there are so many issues that are oppressing the living? But we knew that the recovery of one depends on the healing of us all. We knew that working to heal the tears in the fabric of humanity was a deeply spiritual journey of collective recovery. We knew that tombs can become wombs from which something new can emerge.

In conclusion, understanding spirituality in mental health recovery must not be limited to the study of individuals. If we are willing to follow the Spirit of the inquiry, we will inevitably be lead to reflect on collective recovery and the healing of historical and contemporary injustices in mental health systems. The recovery of one depends on the recovery of all.

Pasted from <https://www.patdeegan.com/pat-deegan/lectures/remember-my-name>