InfoMail for February 20, 2002

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News Stories on Human ResearchProtection and
Commentary by Vera Hassner Sharav

February 20, 2002 

FYI

How the Mental Health System hasImpeded Road to Recovery by Stripping Patients of their Humanity

For those interested in gaining insight into the realtragedy of someone who has been diagnosed with a mental illness. This excerptcomes from the depths of the soul of Pat Deegan, Ph.D., a woman who’s beenthere, whose experience is a reflection of the experience of thousands. Dr.Deegan’s powerful testimony reveals how the mental health system has impededpatients’ road to recovery by stripping them of their humanity.

"So much of what we were suffering from wasoverlooked. The context of our lives were largely ignored. The professionals whoworked with us had studied the science of physical objects, not humanscience…. But no one asked for our stories. Instead they thought ourbiographies as schizophrenics had already been written nearly a century beforeby Kraeplin and Blueler."

" We were told to take medications that made us slurand shake, that robbed our youthful bodies of energy and made us walk stiff likezombies. We were told that if we stayed on these medications for the rest of ourlives we could perhaps maintain some semblance of a life. They kept telling usthat these medications were good for us and yet we could feel the high doseneuroleptics transforming us into empty vessels. We felt like will-less souls orthe walking dead as the numbing indifference and drug induced apathy took hold.At such high dosages, neuroleptics radically diminished our personhood and senseof self."

~~~~~~~~~~~~~~~~~

http://www.bu.edu/resilience/examples/recovery-conspiracyofhope.txt

‘Recovery and the Conspiracy of Hope’ Presented at: TheSixth Annual Mental Health Services Conference of Australia and New Zealand.Brisbane, Australia

Presented by: Patricia E. Deegan, Ph.D. 1996(Excerpts…Part I)

…I want to share with you what it is like to bediagnosed at a young age with mental illness and to lose all hope. I want totell you about the dark winter of anguish and apathy when we give up hope andjust sit and smoke and drink coffee.

For those of us who have been diagnosed with mentalillness and who have lived in the sometimes desolate wastelands of mental healthprograms and institutions, hope is not just a nice sounding euphemism. It is amatter of life and death. We know this because, like the sea rose, we have knowna very cold winter in which all hope seemed to be crushed out of us. It startedfor most of us in the prime of our youth. At first we could not name it. It camelike a thief in the night and robbed us of our youth, our dreams, ouraspirations and our futures. It came upon us like a terrifying nightmare that wecould not awaken from.

And then, at a time when we most needed to be near theone’s we loved, we were taken away to far off places. At the age of 14 or 17 or22 we were told that we had a disease that had no cure. We were told to takemedications that made us slur and shake, that robbed our youthful bodies ofenergy and made us walk stiff like zombies. We were told that if we stayed onthese medications for the rest of our lives we could perhaps maintain somesemblance of a life. They kept telling us that these medications were good forus and yet we could feel the high dose neuroleptics transforming us into emptyvessels. We felt like will-less souls or the walking dead as the numbingindifference 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 pulledthe blankets up tight around our bodies but we did not sleep. During those firstfew nights in the hospital we lay awake. You see, at night the lights from thehouses in the community shine through the windows of the mental institution.Life still went on out there while ours crumbled all about us. Those lightsseemed very, very far away. …And indeed, this is how far away it felt in themental hospital. The road back home was not clear. And as we lay there in thedarkness we were scared and could not even imagine the way out of this awfulplace. And when no one was looking we wept in all of that loneliness.

But when morning came we raged. We raged against the bleakprophesies 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 inthis hospital too long. We are different. We will return home and everythingwill be just the same. It’s just a bad dream. A temporary setback.

In time we did leave the hospital. We stood on the stepswith our suitcases in hand. We had such courage – our youthful optimism wavedlike triumphant flags at a homecoming parade. We were going to make it. We werenever going to come back to the hospital again.

Some did make it. But most of us returned home and foundthat nothing was the same anymore. Our friends were frightened of us or werestrangely absent. They were overly careful when near us. Our families weredistraught and torn by guilt. They had not slept and their eyes were stillswollen from the tears they cried. And we, we were exhausted. But we werewilling to try. And I swear, with all the courage we could muster we tried toreturn to work and to school, we tried to pick up the pieces, and we prayed forthe strength and perseverance to keep trying. But it seemed that God turned adeaf ear to our prayers. The terrible distress came back and our lives wereshattered 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 themessages of hopelessness and stigma which so permeated the places we receivedtreatment, began to sink in. We slowly began to believe what was being saidabout us. It seemed that the system tried to break our spirit and was moreintent on gaining, even coercing our compliance, than listening to us and ourneeds.

We found ourselves undergoing that dehumanizingtransformation from being a person to being an illness: "aschizophrenic", "a multiple", "a bi-polar" (Deegan1992). Our personhood and sense of self continued to atrophy as we were coachedby professionals to learn to say, "I am a schizophrenic"; "I am abi-polar"; "I am a multiple". And each time we repeated thisdehumanizing litany our sense of being a person was diminished as "thedisease" 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 welearned to equate our very selves with our illness. They said it was progressbecause we learned to say "I am a schizophrenic". But we felt noprogress in this. We felt time was standing still. The self we had been seemedto 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. Andthe present became an endless succession of moments marked by the next cigaretteand the next.

So much of what we were suffering from was overlooked. Thecontext of our lives were largely ignored. The professionals who worked with ushad studied the science of physical objects, not human science. They did notunderstand 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, inrelations to disease – in relations to the physical. . . the study of diseaseand identity cannot be disjoined. . . (stories) bring us to the veryintersection of mechanism and life, to the relation of physiological processesto biography" (p. viii). But no one asked for our stories. Instead theythought our biographies as schizophrenics had been already been written nearly acentury before by Kraeplin and Blueler.

Yet much of what we were going through were simply humanexperiences – experiences such as loss and grief and shock and fear andloneliness. 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 difficultto trust anyone. One by one our dreams and hopes were crushed. We seemed to loseeverything. 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 accomplishmentsbut rather by the numbing pain of successive failures. We tried and failed andtried and failed until it hurt too much to try anymore. Now when we left thehospital it was not a question of would we come back, but simply a question ofwhen would we return. In a last, desperate attempt to protect ourselves we gaveup. We gave up trying to get well. Giving up was a solution for us. It numbedthe pain. We were willing to sacrifice enormous parts of ourselves in order tosay "I don’t care". Our personhood continued to atrophy through thisadaptive strategy of not caring anymore. And so we sat in chairs and smoked anddrank coffee and smoked some more.. It was a high price to pay for survival. Wejust gave up. And winter settled in upon us like a long cold anguish.

I’m sure that many of us here today know people withpsychiatric disabilities who are lost in the winter of anguish and apathy I havejust described. It is a time of real darkness and despair. Just like the searose in January and February, it is a time when nothing seems to be growingexcept 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 goon?". Even the simplest of tasks is overwhelming at this time. One learnsto be helpless because that is safer than being completely hopeless.

The winter of anguish and the atrophy of the sense of selfthat I am describing is a hell not only for the ones living it, but also for theone’s who love and care for us: friends, relatives and even professionals. Ihave described what it feels like on the inside as it is being lived. Butfriends, relatives and professionals see the anguish and indifference from theoutside.

From the outside it appears that the person just isn’ttrying anymore. Very frequently people who show up at clubhouses and otherrehabilitation programs are partially or totally immersed in this despair andanguish. On good days we may show up at program sites but that’s about all. Wesit on the couch and smoke and drink coffee. A lot of times we don’t bothershowing up at programs at all. From the outside we may appear to be among theliving dead. We appear to be apathetic, listless, lifeless. As professionals,friends and relatives we may think that these people are "full ofexcuses", they don’t seem to try anymore, they appear to be consistentlyinconsistent, and it appears that the only thing they are motivated toward isapathy. At times these people seem to fly into wishful fantasies about magicallyturning their lives around. But these seem to us to be only fantasies, amomentary refuge from chronic boredom. When the fantasy collapses like a wornballoon, nothing has changed because no real action has been taken. Apathyreturns and the cycle of anguish continues.

Staff, family and friends have very strong reactions tothe person lost in the winter of anguish and apathy. From the outside it can bedifficult to truly believe that there really is a person over there. Faced witha person who truly seems not to care we may be prompted to ask the question thatOliver 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 thisquestion to each of us here today. Can the person inside become a disease? Canschizophrenia pith or scoop-out the person so that nothing is left but thedisease? Each of us must meet the challenge of answering this question forourselves. In answering this question, the stakes are very high. Our ownpersonhood, our own humanity is on the line in answering this question. Let meexplain:

Sitting in the day room, literally couched in a cigarettesmoke screen, the profound apathy and indifference we may encounter in anotherperson will challenge our own humanity and our own capacity to be compassionate.We may question whether there really is a person over there…..

However, when faced with a person lost in anguish andapathy, there are a number of more common responses than finding a way toestablish an I-Thou relationship. A frequent response is what I call the"frenzied savior response". We have all felt like this at one time oranother in our work. The frenzied savior response goes like this : The morelistless 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, themore willful we become. The more they give up, the harder we try. The moredespairing they become, the more we indulge in shallow optimism. The moretreatment plans they abort, the more plans we make for them. Needless to say wesoon find ourselves burnt out and exhausted. Then our anger sets in.

Our anger sets in when our best and finest expectationshave been thoroughly thwarted by the person lost in anguish and apathy. We feelused and thoroughly unhelpful. We are angry. Our identities as helping peopleare truly put to the test by people lost in the winter of anguish andindifference. At this time it is not uncommon for most of us to begin to blamethe person with the psychiatric disability at this point. We say things like :"They are lazy. They are hopeless. They are not sick, they are justmanipulating. They are chronic. They need to suffer the natural consequences oftheir actions. They like living this way. They are not mad, they are bad. Theproblem is not with the help we are offering, the problem is that they can’t behelped. They don’t want help. They should be thrown out of this program so theycan ‘hit bottom’. Then they will finally wake up and accept the good help wehave been offering."

During this period of anger and blaming a most interestingthing happens. We begin to behave just like the person we have been trying sohard to save. Frequently at this point staff simply give up. We enter into ourown 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 tonot want help. It hurts too much to keep trying to help and failing. It hurtstoo much to keep caring about them when they can’t even seem to care aboutthemselves. At this point we collapse into our own winter of anguish and acoldness settles into our hearts.

We are no better at living in despair than are people withpsychiatric disabilities. We cannot tolerate it so we give up too. Some of usgive up by simply quitting our jobs. We reason that high tech computers do asthey 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 manin the Dunkin Donuts commercial: "It’s time to make the donuts, it’s timeto make the donuts". Still others of us become chronically cynical. Wefloat along at work like pieces of dead wood floating on the sea, watchingadministrators come and go like the weather; taking secret delight in watchingon more mental health initiative go down the tubes; and doing nothing to helpchange the system in a constructive way. These are all ways of giving up. In allthese ways we live out our own despair.

Additionally entire programs, service delivery systems andtreatment models can get caught up in this despair and anguish as well. Thesesystems begin to behave just like the person with a psychiatric disability whohas given up hope. A system that has given up hope spends more time screeningout program participants than inviting them in. Entry criteria become rigid andinflexible. If you read between the lines of the entry criteria to such programsthey basically state: If you are having problems, come back when they are fixedand we will be glad to help you. Service systems that have given up hope attemptto cope with despair and hopelessness by distancing and isolating the verypeople they are supposed to be serving. Just listen to the language we use: Insuch mental health systems we have "gatekeepers" whose job it is to"screen" and "divert" service users. In fact, we actuallyuse 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 theanguish and apathy of people with psychiatric disability with our own anguishand apathy? I think there is an alternative. The alternative to despair is hope.The alternative to apathy is care. Creating hope filled, care filledenvironments that nurture and invite growth and recovery is the alternative.

Remember the sea rose? During the cold of winter when allthe world was frozen and there was no sign of spring, that seed just waited inthe darkness. It just waited. It waited for the soil to thaw. It waited for therains to come. When the earth was splintered with ice, that sea rose could notbegin to grow. The environment around the sea rose had to change before that newlife could emerge and come into being.

People with psychiatric disabilities are waiting just likethat sea rose waited. We are waiting for our environments to change so that theperson 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 personwho has been diagnosed with a mental illness passes through this time of anguishand apathy, even if only for a short while. Remember that giving up is asolution. 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 facesus is to move from just surviving, to recovering. But in order to do this, theenvironments in which we are spending our time must change. I use the wordenvironment to include, not just the physical environment, but also the humaninteractive environment that we call relationship.

From this perspective, rather than seeing us asunmotivated, apathetic, or hopeless cases, we can be understood as people whoare waiting. We never know for sure but perhaps, just perhaps, there is a newlife within a person just waiting to take root if a secure and nurturing soil isprovided. This is the alternative to despair. This is the hopeful stance. MarieBalter expressed this hope when asked, "Do you think that everybody can getbetter?" she responded: "It’s not up to us to decide if they can orcan’t. Just give everybody the chance to get better and then let them go attheir own pace. And we have to be positive – supporting their desire to livebetter and not always insisting on their productivity as a measure of theirsuccess". (Balter 1987, p.153).