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>

Recovery and the Conspiracy of Hope


Presented at: "There's a Person In Here": The Sixth Annual Mental Health Services Conference of Australia and New Zealand. Brisbane, Australia
Date: September 16, 1996
Presented by: Patricia E. Deegan, Ph.D.
Copyright © Pat Deegan, PhD & Associates, LLC.
For permission to distribute please contact us.


I would like to thank you for this opportunity to speak with you today. It is a special pleasure to be here in your lovely country. I feel the theme of our conference is very important and in many ways reflects the main message in all of my writings. That theme is "There is a person in here". In many respects, coming to know that there is a person in here is the easy part. Remembering to always listen for and to reverence the person over there - that can be the more difficult part.
Let me begin by telling you a little about the part of the country I live in. I live in the northeastern part of the United States that we call New England. Where I live, we have four very distinct seasons ranging from the bitter cold of snowy winter, to the muddy season of unfolding colors that we call spring, to the simmering days of summer right through to the spectacular unfolding of autumn when all of the leaves on the trees burst into bright yellows and oranges and reds and then fall to the ground leaving the trees naked and stark and bare. There is always a lesson for me in the cycle of the seasons. I am always reminded that growth happens in a context and that in order for growing things to emerge, environments must change to accommodate that growth.
One spring, after a long and icy winter, I wrote this:
It is springtime and hope is everywhere. It is springtime and it feels like all living things are trembling into being, still wet and new and fragile and determined to put down roots and grow.
I think of a sea rose I watched growing out at a beach near my home this past summer. It is a fragile and tender life, that sea flower. I love to see it. At dawn it moves in a slow upsway as it turns toward the morning star. That sea rose is a light seeker. It bends toward the light. It is a light-seeker whose roots reach way down into the darkness of the earth. In fact, it was in darkness that his new life began.
Way back in January and February, when the icy winds lashed across those dunes and the days were short and the light gave no warmth, even then, way down under the ground, this new life was waiting. Nobody could see it, nobody was there to witness it, and yet this promise of a sea flower waited. It waited in that icy darkness for the sands to begin to thaw. It waited for the rains to come and loosen the earth. And then, ever so slowly, it began to stir. Moving one grain of sand at a time, it began to grow.
It did not grow straight toward the light at first. No. First its growth sought a downward course, reaching, stretching, blindly groping through shifting sands to find a solid place. A place to be rooted. A good soil to cling to and to be nurtured by. A home soil that could sustain it even in driving rains and tormenting winds. And then, having rooted itself in this way, the sea rose began its journey toward the light. Poking through the darkness, that sea flower emerged tiny and lovely and insistent and courageous. On frail and trembling limbs, this small thing rose to a new life…
That sea rose teaches us a lot about hope. It teaches us that hope emerges out of darkness. It teaches us that hope can grow in nurturing environments that allow one to become rooted and secure. And I have come here today to celebrate the hope symbolized by that sea rose.
I believe it is a spirit of hope that gathers us here together today. We come from the far corners of the world : from Australia, New Zealand, the United States, Canada, Sweden, Ireland China and many other countries. We are direct service workers and administrators, policy makers and family members, service users and mental health professionals. Fifteen years ago you would never have caught us all in the same room together! Indeed, ten years ago we would hardly even speak to each other! But here we are, gathered together - social workers sitting next to family members who are sitting next to policy makers, who are sitting next to casemanagers, who are sitting next to academicians who are sitting next to service users . . . What is going on here? Are the old rules being broken? Is the old order shaking a bit at the foundation? IS THERE A CONSPIRACY GOING ON?
I love the word conspiracy. It comes from the Latin "conspirare" which means to breath the spirit together. What is the spirit we are breathing together here today?
It is a spirit of hope. Both individually and collectively we have refused to succumb to the images of despair that so often are associated with mental illness. We are a conspiracy of hope and we are pressing back against the strong tide of oppression which for centuries has been the legacy of those of us who are labeled with mental illness. We are refusing to reduce human beings to illnesses. We recognize that within each one of us there is a person and that, as people, we share a common humanity with those who have been diagnosed with mental illness. We are here to witness that people who have been diagnosed with mental illness are not things, are not objects to be acted upon, are not animals or subhuman life forms. We share in the certainty that people labeled with mental illness are first and above all, human beings. Our lives are precious and are of infinite value. And as we progress through this conference we will be learning that those of us with psychiatric disabilities can become experts in our own self care, can regain control over our lives, and can be responsible for our own individual journey of recovery. And finally, as the sea rose teaches us, we are learning that the environment around people must change if we are to be expected to grow into the fullness of the person who, like a small seed, is waiting to emerge from within each of us.
If we plant a seed in a desert and it fails to grow, do we ask, "What is wrong with the seed?" No. The real conspiracy lays in this: to look at the environment around the seed and to ask, "what must change in this environment such that the seed can grow?" The real conspiracy that we are participating in here today is to stop saying what's wrong with psychiatric survivors and to start asking: "How do we create hope filled, humanized environments and relationships in which people can grow?".
But before speaking further of hope and humanity, I want to share with you what it is like to be diagnosed at a young age with mental illness and to lose all hope. I want to tell you about the dark winter of anguish and apathy when we give up hope and just sit and smoke and drink coffee.
For those of us who have been diagnosed with mental illness and who have lived in the sometimes desolate wastelands of mental health programs and institutions, hope is not just a nice sounding euphemism. It is a matter of life and death. We know this because, like the sea rose, we have known a very cold winter in which all hope seemed to be crushed out of us. It started for most of us in the prime of our youth. At first we could not name it. It came like a thief in the night and robbed us of our youth, our dreams, our aspirations and our futures. It came upon us like a terrifying nightmare that we could not awaken from.
And then, at a time when we most needed to be near the one's we loved, we were taken away to far off places. At the age of 14 or 17 or 22 we were told that we had a disease that had no cure. We were told to take medications that made us slur and shake, that robbed our youthful bodies of energy and made us walk stiff like zombies. We were told that if we stayed on these medications for the rest of our lives we could perhaps maintain some semblance of a life. They kept telling us that these medications were good for us and yet we could feel the high dose neuroleptics transforming us into empty vessels. We felt like will-less souls or the walking dead as the numbing indifference and drug induced apathy took hold. At such high dosages, neuroleptics radically diminished our personhood and sense of self.
As these first winds of winter settled upon us we pulled the blankets up tight around our bodies but we did not sleep. During those first few nights in the hospital we lay awake. You see, at night the lights from the houses in the community shine through the windows of the mental institution. Life still went on out there while ours crumbled all about us. Those lights seemed very, very far away. The Zulu people have a word for our phrase "far away". In Zulu "far away" means, "There where someone cries out: ‘Oh mother, I am lost" (Buber 1958, p. 18). And indeed, this is how far away it felt in the mental hospital. The road back home was not clear. And as we lay there in the darkness we were scared and could not even imagine the way out of this awful place. And when no one was looking we wept in all of that loneliness.
But when morning came we raged. We raged against the bleak prophesies that were being made for our lives. They are wrong! They are wrong! We are not crazy. We are not like those other ones over there who have been in this hospital too long. We are different. We will return home and everything will be just the same. It's just a bad dream. A temporary setback.
In time we did leave the hospital. We stood on the steps with our suitcases in hand. We had such courage - our youthful optimism waved like triumphant flags at a homecoming parade. We were going to make it. We were never going to come back to the hospital again.
Some did make it. But most of us returned home and found that nothing was the same anymore. Our friends were frightened of us or were strangely absent. They were overly careful when near us. Our families were distraught and torn by guilt. They had not slept and their eyes were still swollen from the tears they cried. And we, we were exhausted. But we were willing to try. And I swear, with all the courage we could muster we tried to return to work and to school, we tried to pick up the pieces, and we prayed for the strength and perseverance to keep trying. But it seemed that God turned a deaf ear to our prayers. The terrible distress came back and our lives were shattered once again.
And now our winter deepened into a bone chilling cold. Something began to die in us. Something way down deep began to break. Slowly the messages of hopelessness and stigma which so permeated the places we received treatment, began to sink in. We slowly began to believe what was being said about us. It seemed that the system tried to break our spirit and was more intent on gaining, even coercing our compliance, than listening to us and our needs.
We found ourselves undergoing that dehumanizing transformation from being a person to being an illness: "a schizophrenic", "a multiple", "a bi-polar" (Deegan 1992). Our personhood and sense of self continued to atrophy as we were coached by professionals to learn to say, "I am a schizophrenic"; "I am a bi-polar"; "I am a multiple". And each time we repeated this dehumanizing litany our sense of being a person was diminished as "the disease" loomed as an all powerful "It", a wholly Other entity, an "in-itself" that we were taught we were powerless over.
Professionals said we were making progress because we learned to equate our very selves with our illness. They said it was progress because we learned to say "I am a schizophrenic". But we felt no progress in this. We felt time was standing still. The self we had been seemed to fade farther and farther away, like a dream that belonged to somebody else. The future seemed bleak and empty and promised nothing but more suffering. And the present became an endless succession of moments marked by the next cigarette and the next.
So much of what we were suffering from was overlooked. The context of our lives were largely ignored. The professionals who worked with us had studied the science of physical objects, not human science. They did not understand what the neurologist Oliver Sacks (1970) so clearly articulates: "To restore the human subject at the center - the suffering, afflicted, fighting, human subject - we must deepen a case history to a narrative or tale; only then do we have a ‘who' as well as a ‘what', a real person, a patient, in relations to disease - in relations to the physical. . . the study of disease and identity cannot be disjoined. . . (stories) bring us to the very intersection of mechanism and life, to the relation of physiological processes to biography" (p.viii). But no one asked for our stories. Instead they thought our biographies as schizophrenics had been already been written nearly a century before by Kraeplin and Blueler.
Yet much of what we were going through were simply human experiences - experiences such as loss and grief and shock and fear and loneliness. One by one our friends, relatives and perhaps even families left us. One by one the professionals in our lives moved on and it became too difficult to trust anyone. One by one our dreams and hopes were crushed. We seemed to lose everything. We felt abandoned in our ever-deepening winter.
The weeks, the months or the years began to pass us by. Now our aging was no longer marked by the milestones of a year's accomplishments but rather by the numbing pain of successive failures. We tried and failed and tried and failed until it hurt too much to try anymore. Now when we left the hospital it was not a question of would we come back, but simply a question of when would we return. In a last, desperate attempt to protect ourselves we gave up. We gave up trying to get well. Giving up was a solution for us. It numbed the pain. We were willing to sacrifice enormous parts of ourselves in order to say "I don't care". Our personhood continued to atrophy through this adaptive strategy of not caring anymore. And so we sat in chairs and smoked and drank coffee and smoked some more.. It was a high price to pay for survival. We just gave up. And winter settled in upon us like a long cold anguish.
I'm sure that many of us here today know people with psychiatric disabilities who are lost in the winter of anguish and apathy I have just described. It is a time of real darkness and despair. Just like the sea rose in January and February, it is a time when nothing seems to be growing except the darkness itself. It is a time of giving up. Giving up is a solution. Giving up numbs the pain because we stop asking "why and how will I go on?" Even the simplest of tasks is overwhelming at this time. One learns to be helpless because that is safer than being completely hopeless.
The winter of anguish and the atrophy of the sense of self that I am describing is a hell not only for the ones living it, but also for the one's who love and care for us: friends, relatives and even professionals. I have described what it feels like on the inside as it is being lived. But friends, relatives and professionals see the anguish and indifference from the outside.
From the outside it appears that the person just isn't trying anymore. Very frequently people who show up at clubhouses and other rehabilitation programs are partially or totally immersed in this despair and anguish. On good days we may show up at program sites but that's about all. We sit on the couch and smoke and drink coffee. A lot of times we don't bother showing up at programs at all. From the outside we may appear to be among the living dead. We appear to be apathetic, listless, and lifeless. As professionals, friends and relatives we may think that these people are " full of excuses", they don't seem to try anymore, they appear to be consistently inconsistent, and it appears that the only thing they are motivated toward is apathy. At times these people seem to fly into wishful fantasies about magically turning their lives around. But these seem to us to be only fantasies, a momentary refuge from chronic boredom. When the fantasy collapses like a worn balloon, nothing has changed because no real action has been taken. Apathy returns and the cycle of anguish continues.
Staff, family and friends have very strong reactions to the person lost in the winter of anguish and apathy. From the outside it can be difficult to truly believe that there really is a person over there. Faced with a person who truly seems not to care we may be prompted to ask the question that Oliver Sacks (1970, p. 113) raises: "Do you think William (he) has a soul? Or has he been pithed, scooped-out, de-souled, by disease?" I put this question to each of us here today. Can the person inside become a disease? Can schizophrenia pith or scoop-out the person so that nothing is left but the disease? Each of us must meet the challenge of answering this question for ourselves. In answering this question, the stakes are very high. Our own personhood, our own humanity is on the line in answering this question. Let me explain:
Sitting in the day room, literally couched in a cigarette smoke screen, the profound apathy and indifference we may encounter in another person will challenge our own humanity and our own capacity to be compassionate. We may question whether there really is a person over there. In such an encounter Martin Buber (1958) would instruct us that the I - Thou relationship is challenged. If we relate to a person as if they were a disease then we enter an I - It relationship. The I-It relationship diminishes our own humanity. Of course, the great work that faces us is to hold the sanctity of the person as Thou, even when the person may be lost to themselves. That is the great act of compassion. To hold the personhood of a person even when they may be lost to themselves. This deepens our humanity or, to paraphrase Martin Buber - I become I by saying Thou (p.11).
However, when faced with a person lost in anguish and apathy, there are a number of more common responses than finding a way to establish an I-Thou relationship. A frequent response is what I call the "frenzied savior response". We have all felt like this at one time or another in our work. The frenzied savior response goes like this : The more listless and apathetic the person gets, the more frenetically active we become. The more they withdraw, the more we intrude. The more will-less they become, the more willful we become. The more they give up, the harder we try. The more despairing they become, the more we indulge in shallow optimism. The more treatment plans they abort, the more plans we make for them. Needless to say we soon find ourselves burnt out and exhausted. Then our anger sets in.
Our anger sets in when our best and finest expectations have been thoroughly thwarted by the person lost in anguish and apathy. We feel used and thoroughly unhelpful. We are angry. Our identities as helping people are truly put to the test by people lost in the winter of anguish and indifference. At this time it is not uncommon for most of us to begin to blame the person with the psychiatric disability at this point. We say things like: "They are lazy. They are hopeless. They are not sick, they are just manipulating. They are chronic. They need to suffer the natural consequences of their actions. They like living this way. They are not mad. They are bad. The problem is not with the help we are offering, the problem is that they can't be helped. They don't want help. They should be thrown out of this program so they can ‘hit bottom'. Then they will finally wake up and accept the good help we have been offering."
During this period of anger and blaming a most interesting thing happens. We begin to behave just like the person we have been trying so hard to save. Frequently at this point staff simply give up. We enter into our own despair and anguish. Our own personhood begins to atrophy. We too give up. We stop trying. It hurts too much to keep trying to help the person who seems to not want help. It hurts too much to keep trying to help and failing. It hurts too much to keep caring about them when they can't even seem to care about themselves. At this point we collapse into our own winter of anguish and a coldness settles into our hearts.
We are no better at living in despair than are people with psychiatric disabilities. We cannot tolerate it so we give up too. Some of us give up by simply quitting our jobs. We reason that high tech computers do as they are told and, besides, the pay is better. Others of us decide not to quit, but rather we grow callous and hard of heart. We approach our jobs like the man in the Dunkin Donuts commercial: "It's time to make the donuts, it's time to make the donuts". Still others of us become chronically cynical. We float along at work like pieces of dead wood floating on the sea, watching administrators come and go like the weather; taking secret delight in watching one more mental health initiative go down the tubes; and doing nothing to help change the system in a constructive way. These are all ways of giving up. In all these ways we live out our own despair.
Additionally entire programs, service delivery systems and treatment models can get caught up in this despair and anguish as well. These systems begin to behave just like the person with a psychiatric disability who has given up hope. A system that has given up hope spends more time screening out program participants than inviting them in. Entry criteria become rigid and inflexible. If you read between the lines of the entry criteria to such programs they basically state: If you are having problems come back when they are fixed and we will be glad to help you. Service systems that have given up hope attempt to cope with despair and hopelessness by distancing and isolating the very people they are supposed to be serving. Just listen to the language we use: In such mental health systems we have "gatekeepers" whose job it is to "screen" and "divert" service users. In fact, we actually use the language of war in our work. For instance we talk about sending "front-line staff" into the "field" to develop treatment "strategies" for "target populations".
Is there another alternative? Must we respond to the anguish and apathy of people with psychiatric disability with our own anguish and apathy? I think there is an alternative. The alternative to despair is hope. The alternative to apathy is care. Creating hope filled, care filled environments that nurture and invite growth and recovery is the alternative.
Remember the sea rose? During the cold of winter when all the world was frozen and there was no sign of spring, that seed just waited in the darkness. It just waited. It waited for the soil to thaw. It waited for the rains to come. When the earth was splintered with ice, that sea rose could not begin to grow. The environment around the sea rose had to change before that new life could emerge and come into being.
People with psychiatric disabilities are waiting just like that sea rose waited. We are waiting for our environments to change so that the person within us can emerge and grow.
Those of us who have given up are not to be abandoned as "hopeless cases". The truth is that at some point every single person who has been diagnosed with a mental illness passes through this time of anguish and apathy, even if only for a short while. Remember that giving up is a solution. Giving up is a way of surviving in environments which are desolate, oppressive places and which fail to nurture and support us. The task that faces us is to move from just surviving, to recovering. But in order to do this, the environments in which we are spending our time must change. I use the word environment to include, not just the physical environment, but also the human interactive environment that we call relationship.
From this perspective, rather than seeing us as unmotivated, apathetic, or hopeless cases, we can be understood as people who are waiting. We never know for sure but perhaps, just perhaps, there is a new life within a person just waiting to take root if a secure and nurturing soil is provided. This is the alternative to despair. This is the hopeful stance. Marie Balter expressed this hope when asked, "Do you think that everybody can get better?" she responded: "It's not up to us to decide if they can or can't. Just give everybody the chance to get better and then let them go at their own pace. And we have to be positive - supporting their desire to live better and not always insisting on their productivity as a measure of their success". (Balter 1987, p.153).
So it is not our job to pass judgment on who will and will not recover from mental illness and the spirit breaking effects of poverty, stigma, dehumanization, degradation and learned helplessness. Rather, our job is to participate in a conspiracy of hope. It is our job to form a community of hope which surrounds people with psychiatric disabilities. It is our job to create rehabilitation environments that are charged with opportunities for self-improvement. It is our job to nurture our staff in their special vocations of hope. It is our job to ask people with psychiatric disabilities what it is they want and need in order to grow and then to provide them with good soil in which a new life can secure its roots and grow. And then, finally, it is our job to wait patiently, to sit with, to watch with wonder, and to witness with reverence the unfolding of another person's life.
That sounds good but how do we do it? I have some very concrete suggestions as to how to enter into a conspiracy of hope and build communities of hope around people who have lost hope.
First we must be committed to changing the environments that people are being asked to grow in. We must recognize that real change can be quite uncomfortable and sometimes I worry we will content ourselves with superficial change. I worry about new and catchy words like consumer integration, empowerment, clubhouse models and partnership. It seems to me that over the decades we keep coming up with all kinds of trendy words and names to call each other. For instance in the fifties it was the doctors and the patients. In the sixties it was the staff and the clients. In the seventies it was the providers and the consumers. In the eighties it was the staff and the members. Now in the nineties we have "shareholders" and the Managed Care Corporations.
Yes, the names we call each other have certainly changed. But I would argue that the fundamental relationship between those labeled with mental illness and those who are not, has remained essentially unchanged. There is a wise old monk who lives in the Nova Nada community, out in Kempville, Nova Scotia. His name is Fr. William MacNamara. When talking about our attempts to bring about change, he says: "It's like we keep rearranging the chairs on the deck of the Titanic but all we really achieve through this effort is a better view while going down". That's the big danger of simply using the newest program designs and politically correct language. If we're not careful, all this will amount to is rearranging the chairs on the deck of a sinking ship. Somebody has got to say, "Stop! Wait! Forget the catchy words. There's a big gaping hole in this boat we call the mental health system and we are all going down with it!"
You see, I would argue that until the fundamental relationship between people who have been psychiatrically labeled and those who have not changes, until the radical power imbalance between us is at least equalized, until our relationships are marked by true mutuality, until we stop using barbaric practices such as restraint and seclusion while trying to convince people that such torture is for there own good, and until we recognize the common ground of our shared humanity and stop the spirit breaking effects of dehumanization in the mental health system, then that gaping hole will continue to sink the best of our efforts.
The human-interactive environment of mental health programs and the community must change if people are going to move from just surviving to the journey of recovery. We must stop exercising "power over" the people we work with. This only produces unnecessary dependency and learned helplessness. Instead we must join with people like Dr. Jean Baker Miller (1976) and other scholars at the Stone Center at Wellesley College. Following their lead we must begin to think in terms of having " power with" or "creating power together" rather than having "power and control over" the people we work with. In this way traditional power relationships, which have historically been so oppressive for people with psychiatric disabilities, will change. Specifically, this means we must stop using the phrase, "I judge this to be in the client's best interest" and instead ask people what they want for their own lives and provide them with the skills and support to achieve it.
We must commit ourselves to removing environmental barriers which block people's efforts towards recovery and which keep us locked in a mode of just trying to survive. For instance, I would suggest examining the following questions:
1. Are the people we work with overmedicated? Very often the apathy, lack of motivation, and indifference we observe is an effect of neuroleptics. Are we teaching consumer/survivors about this drug effect and helping them effectively advocate for medication changes and/or reductions? The multinational drug industry is literally making a fortune through the sales of these drugs. Our priority is not to increase their quarterly profit margins. Our priority is to support people in their recovery process. It is not possible to actively participate in our own recovery process when we are in state of drug induced mental Parkinsonism, apathy and indifference.
2. Are consumer/survivors in both community based and hospital programs involved in evaluating staff work performance? Who better knows how effective a staff person is than those receiving services from that staff person? Additionally, are we providing consumer survivors with the skills training and support to conduct such evaluations?
3. Are program participants and hospital inpatients receiving peer skills training on how to participate in and effectively get what they want from a treatment team? Are we allowed to sit through the entire treatment planning meeting and are staff committed to speaking in plain English so we can understand the conversation? Are there peer advocates who are available to come to the treatment planning meetings with us? Are there opportunities to meet prior to the team meeting in order to strategize what we want to get out of the meeting and how to go about presenting our ideas? Is there time to role-play speaking up and dealing with questions prior to the treatment planning meeting?
4. Are there separate toilets or eating space for staff and program participants? If there are, they should be eliminated. This is called segregation and creates second-class citizens.
5. Who can use the phones? Who makes what decisions? Who has the real power in this program? Information is power and having access to information is empowering. What are the barriers to getting information in the program?
6. Do we understand that people with psychiatric disabilities possess valuable knowledge and expertise as a result of their experience? Do we nurture this important human resource? Are peer run, mutual help groups available? Are we actively seeking to hire people with psychiatric disabilities and to provide the supports and accommodation they may request?
7. Have we created environments in which it is possible for staff people to be human beings with human hearts? Do we offer supervision or staff surveillance? Perhaps we could help create more humanized work environments if we sought to view working with people as a journey in which we both move and are moved by the people we seek to serve. Perhaps we could offer our workers what Jean Vanier (1988) calls "accompaniment". Accompaniment means offering to walk with our staff as they make that sometimes painful, sometimes joyous journey of the heart we call the "direct care relationship". Directly caring. Ah! Now there's true change.
8. Do we work in a system which rewards passivity, obedience and compliance? Is compliance seen as a desirable outcome? As a friend who is a consumer/survivor told me, "Tell those casemanagers that they have it all wrong. Tell them to stop saying that compliance is the road to independence". And indeed, compliance is not the road to independence. Learning to become self-determining is an outcome that is indicative of environments that support opportunities for recovery and empowerment.
9. Have we embraced the concept of the "dignity of risk" and the "right to failure"? " Chronically normal people" (CNP's !), or people who have not been psychiatrically labeled, are allowed to make dumb, uninsightful decisions all the time in their lives. My favorite example is Elizabeth Taylor who just got her eighth divorce. We might say, "She lacks insight! She is failing to learn from past experience!" However, when she embarks on marriage #9, no SWAT team of nurses with Prolixin injections will descend upon her "in her best interest". But just imagine if a person with a psychiatric disability were to announce to their treatment team that they were about to get married for the 9th time! People learn, and sometimes don't learn from failures. We must be careful to distinguish between a person making (from our perspective) a dumb or self-defeating choice, and a person who is truly at risk.
10. Are there opportunities within the mental health system for people to truly improve their lives? Are there a range of affordable, normal housing situations from which people can choose a place to live? Is there work available? A person who just recently went back to work after many years of hospitalization said to me, " What's all this talk about empowerment? I can tell you the definition of empowerment: "It's a decent paycheck at the end of the week".
These are just some suggestions about how to create environments in which it is possible for people to grow.
Then, as we build these hope filled environments, we must recognize that people with psychiatric disabilities do not "get rehabilitated" in the same sense that cars " get tuned up" (Deegan 1988). We are not passive objects which professionals are responsible for "rehabilitating". Many of us find this connotation of the word rehabilitation to be oppressive. We are not objects to be acted on. Rather we are fully human subjects who can act, and in acting can change our situation.
We are not objects to be fixed. Such a connotation robs us of our own sense of autonomy and self determination. It places responsibility in the wrong place. It perpetuates the myth that we are not and cannot be responsible for our own lives, decisions and choices.
The truth is that nobody has the power to rehabilitate anybody else's life. This is clearly evidenced in the fact that we can make the finest and most advanced rehabilitation technologies and programs available to people with disabilities and still fail to help them. As it is said, "You can lead a horse to water but you can't make it drink". Something more than just good services is needed. That " something more" is what I call recovery.
The concept of recovery differs from that of rehabilitation in as much as it emphasizes that people are responsible for their own lives and that we can take a stand toward our disability and what is distressing to us. We need not be passive victims. We need not be "afflicted". We can become responsible agents in our own recovery process. That is why it is so dangerous to reduce a person to being an illness. If we insist that a person learn to say, "I am a schizophrenic", then in essence we are insisting that the person equate their personhood with illness. Through such a dehumanizing reduction the disease takes on what is called a "master status" in terms of identity. Thus when a person learns to believe "I am a schizophrenic", when their identity is synonymous with a disease, then there is no one left inside to take on the enormous work of recovery. That is why we must always help people to use person first language i.e., I am a person labeled with schizophrenia; I am a person diagnosed with mental illness, etc. Person first language always reminds us that first and foremost we are human beings who can take a stand toward what is distressing to us.
Each person's journey of recovery is unique. Indeed, each of us must discover for ourselves what promotes our recovery and what does not. Some of us find that intermittent or ongoing treatment is an important part of our recovery process. However others find that they no longer require mental health services and leave the system entirely (Ogawa 1987)
For some of us who have historically used or abused drugs of alcohol, or who have grown up in alcoholic families, or who have survived childhood sexual, emotional and/or physical abuse, participation in various self help and twelve step programs may play a vital role in our recovery process.
Many of us find that social and vocational rehabilitation programs offer us unique opportunities and we use these services as part of our recovery process. Most of us find that developing friendships based on love and mutual respect is very important to our recovery. Of course, permanent, affordable and fully integrated housing is fundamental to the recovery process. Many of us find that participating in a spiritual community of our choice gives us the strength and hope to keep working hard in our recovery process.
Finally, many of us find it important to participate in consumer/survivor run support networks and advocacy groups in an effort to help change the mental health system, to establish alternatives to traditional services, to make government aware of our needs, to fight for our full civil rights and to collectively struggle for social justice. In fact, I use the term recovery to refer not only to the process of recovering from mental illness, but also to refer to recovering from the effects of poverty, second class citizenship, internalized stigma, abuse and trauma sustained at the hands of some "helping professionals", and the spirit breaking effects of the mental health system. Indeed, self help and social action cannot be arbitrarily separated. At some point helping ourselves includes joining together as a group to fight the injustices that devalue us and keep us in the position of second-class citizens.
Recovery does not refer to an end product or result. It does not mean that one is " cured" nor does not mean that one is simply stabilized or maintained in the community. Recovery often involves a transformation of the self wherein one both accepts ones limitation and discovers a new world of possibility. This is the paradox of recovery i.e., that in accepting what we cannot do or be, we begin to discover who we can be and what we can do. Thus, recovery is a process. It is a way of life. It is an attitude and a way of approaching the day's challenges. It is not a perfectly linear process. Like the sea rose, recovery has its seasons, its time of downward growth into the darkness to secure new roots and then the times of breaking out into the sunlight. But most of all recovery is a slow, deliberate process that occurs by poking through one little grain of sand at a time.
As the sea rose teaches us, the work of growth is slow and difficult but the result is beautiful and wondrous. We have chosen very difficult work. Sometimes I think we are a little weird for choosing this line of work. I mean, computers don't ask that we grow and the pay is certainly better. But we stick with this work and are faithful to it. Why? Because we are part of a conspiracy of hope and we see in the face of each person with a psychiatric disability a life that is just waiting for good soil in which to grow. We are committed to creating that good soil. And so I celebrate you. I celebrate the strong and fiercely tenacious spirit of people with psychiatric disabilities. I celebrate the person within each of us. I celebrate hope. I celebrate our conspiracy. And I think we all deserve a round of applause. Thank you!


Pasted from <https://www.patdeegan.com/pat-deegan/lectures/conspiracy-of-hope>