Network - CMHA Ontario · VOL 18 NO. 3 WINTER 2003 IN THIS ISSUE: Defining Recovery The Road to Recovery Shaping a Recovery Philosophy Recovery: the emergence of new life from the

NetworkVOL 18 NO. 3 WINTER 2003

IN THIS ISSUE:

Defining RecoveryThe Road to RecoveryShaping a Recovery Philosophy

Recovery: the emergenceof new life from thedepths of winter

NetworkVol. 18 No. 3 WINTER 2003

CONTENTS

EDITORIAL COMMITTEEDale Butterill, ChairpersonPatricia BregmanSusan MacartneyLiz ScanlonKaren Wilkinson

CHIEF EXECUTIVE OFFICERBarbara Everett, Ph.D.

ART DIRECTION, DESIGN,EDITORIAL AND WRITING SERVICESRoger Murrayand Associates Incorporated

PRINT PRODUCTIONTimeSavers Print & Graphics

ADMINISTRATIVE ASSISTANTSusan Macartney

OUR MISSION:To provide leadership in advocacy andservice delivery for people with mentaldisorders, and to enhance, maintain andpromote the mental health of allindividuals and communities in Ontario.

Network magazine is published 3 times eachyear by the Canadian Mental HealthAssociation, Ontario Division, 180 DundasStreet West, Suite 2301, Toronto, OntarioM5G 1Z8. All rights reserved. © Copyright2003 Canadian Mental Health Association,Ontario Division. Reproduction in whole orin part without written permission from thepublisher is prohibited. Statements,opinions and viewpoints made or expressedby the writers do not necessarily representthe opinions and views of the CanadianMental Health Association, OntarioDivision or the branch offices. Readers’views are welcomed and may be publishedin Network. Comments and views shouldbe forwarded to the Marketing andCommunications Department, c/oNetwork magazine, at the above address,or: Telephone 416-977-5580Fax 416-977-2264E-mail: [email protected]: www. o n t a r i o . c m h a . c a

Printed in Canada ISSN 1181-7976

Editorial 3

Recovery: A Changing Environment 4The challenge to the mental health field is to supportconsumers by providing an environment that will, inthe words of Dr. William Anthony, enable them to livea satisfying, hopeful and contributing life.

Defining Recovery 6What do consumers expect and what is expected ofmental health service providers when we talk aboutrecovery?

The Road to Recovery: A Personal Journey 10From her experiences as an abused child, which led toyears of psychiatric treatment and medication, to thefulfilment she now finds in her art and poetry, JeanJohnson describes her own personal, ongoing journey ofrecovery.

Shaping a Recovery Philosophy 15The nine regional Mental Health ImplementationTask Forces have adopted the recovery philosophy asbeing the central testing point and guideline forproposals for change that they will make to theMinister of Health and Long Term Care.

Calendar 19

A symbol of resilience and recovery for people who careabout mental illness and health.

NETWORK WINTER 2003 3

What are people recovering fro m ?

BA R B A R A EV E R E T T, PH. D.Chief Executive Officer

EDITORIAL

his issue of Network discusses recoveryfrom mental illness with three viewpointsin mind: How researchers define recovery,

how a person describes her personal journey andwhat difference adopting a philosophy of recoverymight make for an entire service system.Exactly what people are recovering from requiressome careful thought. Here are some of theanswers I have read about or heard from peoplewho have experienced a mental illness. A psychotic break: This is the epitome of mentalillness. It can signal the onset of schizophrenia orcan be part of depression or bipolar disorder. Theexperience of losing one’s mind is described astantamount to losing one’s self. Once the person isstabilized, he or she now knows that the mind canbe a traitor. Thoughts and perceptions are nolonger trusted and firmly held beliefs are exposedas false, sometimes humiliatingly so. A history of childhood trauma: The second event isthe experience of childhood trauma – sexual andphysical abuse, neglect or abandonment, usuallywithin the family context. Child abuse envelopesthe whole of the selfhood of a person. The result,in adolescence or adulthood can be a diagnosis ofmental illness which may include borderlinepersonality disorder and/or depression. In addition to the tragedy of mental illness,people say that they have to recover from theconsequences of the diagnosis.Iatrogenesis: This term is used to describe the harmcaused by medical interventions that weresupposed to alleviate symptoms. Instead of beinghelped, many people, calling themselves psychiatricsurvivors, say that the mental health systemharmed them and recovery can occur only throughopenly expressing anger, engaging in politicalprotest, and in seeking fellowship among peerswho share their views. Disability: Until the advent of psychosocialrehabilitation, it was uncommon for people withmental illness to be called disabled. Access toneeded resources comes through accepting adesignation of long term impairment which, ineffect, creates the social category of "psychiatricdisability." Entering the role of disabled carries

with it admittance to such valued services assubsidized housing, case management, andemployment programs but it is also associated withnegative social consequences that can includemarginalization and isolation. Helplessness and hopelessness: Learned helplessness isdefined as a deep despair that comes from repeatedor prolonged institutionalization. Along withhelplessness comes hopelessness where peoplereceive repeated messages aimed at persuadingthem they have a debilitating illness that will neverimprove. Mental health professionals caninadvertently reward learned helplessness becauseclients who do as they are told are considered easyto manage. They may also contribute tohopelessness by defining "insight" as the capacityto accept a bleak prognosis. Conversely, peoplewho are actively engaged in their own recovery askprobing questions, challenge treatment decisions,protest loudly if they feel wronged, and generallytake on a more egalitarian adult role in themanagement of their own well-being.Discrimination: People who have been diagnosedwith a mental illness are all too aware of thenegative social stereotype they now occupy.Confiding in friends may mean that they no longercall and family members may hide the fact that aloved one is ill because of shame. They may bedenied housing or the chance of employment iftheir diagnosis is known. People are also subjectedto bigoted name calling and the media continuallyportrays them as dangerous. The social isolationthat results impedes recovery and, given thatpeople with mental illness are members of thesame culture that stigmatizes them, they ofteninternalize negative stereotypes and convert theminto self-blame, an attitude which affects recoverybecause people come to expect devaluation andrejection.Given the many challenges that people with mentalillness face, recovery is a complicated journeycomposed of many things but, most of all,courage.

T

4 NETWORK WINTER 2003

In an address given by Patricia E. Deegan, Ph.D. at The Sixth Annual Mental HealthServices Conference of Australia and New Zealand, she compares the journey towardsrecovery, undertaken by someone with a mental illness, to that of the cycle of theseasons: for nature to finally bloom again after the dead of winter, the surroundingenvironment has to change. For those with mental illness, there is hope that the grip of winter is finally easing. Thebelief that certain diagnoses meant inevitable deterioration is changing. Theconsumer/survivor movement has given voice to the journey of recovery as stories areshared and hope, healing and empowerment take hold in individuals’ lives. But what dowe mean by ‘recovery’? How do we design and implement systems that support it? How

do we measure the success of new initiatives and programs?Most importantly, how do we ensure that the changes aresubstantial and not merely cosmetic?In this issue of Network, Dr. Nora Jacobson gives insight intothe complexity of defining recovery, and how that definitionchanges in relation to the individual, the organization and thesystem. In an interview with Jean Johnson we learn that from aconsumer/survivor’s perspective the journey of recovery isongoing. It is defined by a belief in one’s self and nurtured bythe respect and compassion of good friends and companionsalong the way. The nine regional Mental Health Implementation Task Forceshave adopted the recovery philosophy as a ‘driving

fundamental value’ (The Hon. Michael Wilson) in all of the research and consultationsthat have been conducted over the past two years. Mr. Wilson talks about thisphilosophy, and the report which will be presented to the Minister of Health and LongTerm Care, beginning on page 15.Dr. William A. Anthony, Executive Director of the Center for Psychiatric Rehabilitationat Boston University, has described recovery as ‘a way of living a satisfying, hopeful andcontributing life even with limitations caused by illness.’ In Ontario, interest in having arecovery-oriented mental health system is widespread, the challenge is now to learn morefrom our own experience and the experience of others as we strive to make this happen.

R e c ove r y :

A Changing

E n v i r o n m e n t

For those of us who have been diagnosed withmental illness....hope is not just a nice soundingeuphemism. It is a matter of life and death......We have known a very cold winter in which allhope seemed to be crushed out of us. It came likea thief in the night and robbed us of our youth,our dreams, our aspirations and our futures. Itcame upon us like a terrifying nightmare that wecould not awaken from.PATRICIA E. DEEGAN, PH.D.

Recovery: the emergenceof new life from thedepths of winter.


Dr. Jacobson, perhaps we could start off by trying to define what we mean when wetalk about recovery as it relates to mental health.NORA JACOBSON: Recovery means many different things: there isn’t any one recoverymodel. First of all there is a level of recovery that is about what happens in the lives ofindividuals – their experiences of hope and meaning. Then there is a level that has to dowith the service organizations that support individuals in their recoveries. Finally, there’s thesystemic level – the policies that have to be in place to support a recovery-oriented system.

Nora Jacobson is a Research Scientist, Health Systems Research and ConsultingUnit, Centre for Addiction and Mental Health (CAMH) and AssistantProfessor, Department of Psychiatry, University of Toronto. Dr. Jacobsoncompleted an NIMH-sponsored postdoctoral fellowship in theMental Health Services Research Training Program at theUniversity of Wisconsin-Madison. In 1997 she was theAmerican Sociological Association's Spivak ProgramCongressional Fellow, working as a health policy fellowfor Senator Edward M. Kennedy and the SenateLabour Committee. An interpretive social scientist, Dr. Jacobson uses qualitative methods to study the waysin which social constructions of health and illness affectthe making of health policy and the delivery of healthservices. Some of her current work examines how the concept ofrecovery has been constructed by different stakeholders andhow these constructions are made manifest in policy andpractice. She has recently completed a book-lengthmanuscript that explores many of the ideasraised in this conversation.

D e fining Recove r y

“People who have psychiatric disabilities often find that they lose their ‘selves’ inside mental illness. Recovery is in part the process of ‘recovering’ the self byreconceptualizing illness as only a part of the self, not as a definition of thewhole.”NORA JACOBSON, PH.D., DIANNE GREENLEY, M.S.W., J.D.: What is Recovery? A Conceptual Model and Explication.


So would it be true to say that recovery is aprocess as much as it is an outcome?NORA JACOBSON: Yes, very true, but let me prefacewhat we are talking about by saying that as witheverything in recovery there are many differentversions; what I am describing to you is myinterpretation. The way I think about this, and theway I present it when I speak to groups, is thatrecovery is the solution to a problem and peoplethink about this problem on one or more of thethree levels – individual, organizational, systemic –that we spoke about. At the same time you havetwo ways of looking at these three areas. One is tosee recovery as a kind of mental health reform andthe other is to see recovery as a kind oftransformation. So in fact I believe there are atleast six possible interpretations of recovery. Forexample, at the individual reform level the problemrecovery is meant to solve is what we call mentalillness. If you move to the individualtransformation position, the problem is one ofmarginalization, discrimination and prejudiceagainst people who are different. If you’re lookingat recovery on the organizational level from areform perspective, the problem being solved ischaos in the mental health system – lack offunding, lack of good planning, an inability toimplement the practices that evidence suggestswork and so on. When you arrive at the systemslevel transformation position, mental illness doesn’texist – a more radical idea – and it is society itselfthat has to recover. So you can see that peoplemean a whole bunch of things when they talkabout recovery – everything from recovery beingthe logical result of implementing best practicesand ensuring that all individuals have access to thebest care, to recovery meaning that we have asocially just world.

Recovery then would be unique to eachindividual?NORA JACOBSON: Yes, and it would be unique intwo ways. Experientially, every individual who hasbeen diagnosed with a mental illness has differenthopes and dreams, so recovery is different in thatway. It’s also unique because even when you have agroup of people in the room who are talking about

I N D I V I D U A L

REFORM POSITION

Recovery = the solution tothe problem that we call

mental illness.

TRANSFORMATION POSITION

Recovery = the solution tothe problem of stigma anddiscrimination in societytowards those who are

different.

S Y S T E M I C

REFORM POSITION

Recovery = treating mentalillness like any other physical

disorder.


Recovery = acceptance of themore radical idea that

mental illness doesn’t exist –society needs to recover.

O R G A N I Z AT I O N A L

REFORM POSITION

Recovery = the solution tothe problem of lack offunding, housing, etc.


Recovery = the solution tothe problems created bymental health services.

Consumers and professionals who accept the dictionary definitions ofrecovery – to regain normal health, poise or status – may resist the verypossibility of recovery because they see it as an unrealistic expectation.However, it is important to remember that recovery is not synonymouswith cure.What Is Recovery? A Conceptual Model and ExplicationNORA JACOBSON, PH.D., DIANNE GREENLEY, M.S.W., J.D.


a recovery model they areoften coming from adifferent perspective withdifferent definitions of theproblem.

Surely this makes itextremely difficult thennot only to develop arecovery model, buthaving done so tomeasure recovery? NORA JACOBSON:Definitely, and the tworeally exciting parts of thiswhole recovery endeavourright now are first of allwhat do you do toimplement recovery on anorganizational level and,because organizations are so accountabilityminded, how do you measure it? How do youknow if an organization is recovery-oriented?

Can you give a brief history of how this fairlymodern idea of recovery has evolved?NORA JACOBSON: I trace it back to threephenomena. The first isthe consumer/survivormovement, an explicitlypolitical social movementthat contains critiques ofpsychiatry and mentalhealth services and thatseeks to promoteindividual empowerment.You’ll recognize many oftheir ideas in thetransformation position.The second is thepsychiatric rehabilitation model, which thinksabout mental illness as a disability and seeks tohelp individuals do better by teaching themspecific skills and strategies. The third is the bodyof longitudinal research, particularly the work doneby Courtenay Harding and her colleagues inVermont, that has suggested that even patientsfrom the "back wards" of hospitals, diagnosedwith schizophrenia, have a variety of outcomes if

you follow them over along period of time.These three phenomenaare what I see as thesources of the idea ofrecovery that people havebeen talking aboutrecently.

What conclusion dothese three phenomenalead us to regardingrecovery?NORA JACOBSON:Together, they suggestthat people can getbetter, that a diagnosisdoes not mean inevitabledeterioration, that thereare ways in which services

can be designed to help people lead moremeaningful lives, and that even the mostmarginalized people can empower themselves. I think the first person to use the word recovery inthis sense was Patricia Deegan in 1988.

Presumably there needs to be certain servicesand standards in placein the mental healthsystem to create anenvironment that willhelp nurture recovery inindividuals?NORA JACOBSON: Ofcourse this is true.Deegan talks about theways in which we canwork towardsenvironments that nurturerecovery. A 1993 paper

by William Anthony is much more explicit aboutthis issue. He writes that recovery should be thestandard in the mental health system. In thisarticle, and his later work, he develops a modelthat aims to combine psychiatric rehabilitationwith community support services in such a way asto meet people’s multiple, complex needs andpromote recovery.

D e fining Recove r y

“[Recovery] means a kind of readaption tothe illness that allows life to go forward in ameaningful way. The adaptive response is notan end state. It is a process in which theperson is continually trying to maximize thefit between his or her needs and theenvironment.”AGNES B. HATFIELD AND HARRIET P. LEFLEYSurviving Mental Illness: Stress, Coping and Adaptation

“Recovery is the process by which people withpsychiatric disabilities rebuild and furtherdevelop... important personal, social,environmental and spiritual connectionsand confront the devastating effects ofstigma through personal empowerment.Recovery is a process of adjusting one’sattitudes, feelings, perceptions, beliefs, rolesand goals in life. It is a process of self-discovery, self-renewal and transformation.Recovery is a deeply emotional process.Recovery involves creating a new personalvision for oneself.”LEROY SPANIOL, MARTIN KOEHLER, DORI HUTCHINSONThe Recovery Workbook


What do you thinkservices in the mentalhealth system inCanada are currentlygeared towards?NORA JACOBSON: Myfirst reaction is thatprobably different servicesare geared towarddifferent things. A secondresponse would be myimpression that inOntario recently there hasbeen so much upheavalaround the funding ofservices that a lot of what they are about is justsurvival. Surviving as organizations; surviving asindividual providers in a very difficult situation.Something I always say when I talk to audiences ofservice providers is that I think most people whoenter the mental health field do so because theyhave an idea of hope. They really want to make adifference, to help people find ways to improvetheir lives. For many reasons, that gets beaten outof them along the way. So a lot of what needs tohappen with recovery is for service providers to beempowered, as well asclients.

Could you talk aboutthe paper you co-authored entitled WhatIs Recovery? AConceptual Model andExplication?NORA JACOBSON: Thebasic idea is that whenpeople use the wordrecovery they are referringboth to the individual,internal experience I’vementioned and to theexternal environment thatsupports the internal experience. What theconceptual model does is lay out the elements ofboth the internal and the external. The paperactually seems to have nailed down the idea ofrecovery a bit more than I’m comfortable with –

it’s called A ConceptualModel and people oftenask me to speak aboutThe Conceptual Model!

What do you thinkshould berecommended andimplemented in themental health servicessector to ensure webecome recovery-oriented?NORA JACOBSON: I’mgoing to sidestep that

question somewhat. I’m not a clinician. I’m notan expert on services. I’ve only just started doingsome work to look at what this means for serviceproviders so I don’t feel comfortable saying whatshould be implemented. What I do think is keyfor organizations, and what I do feel comfortablesaying, is that really being recovery-orientedmeans making structural changes at the level ofmission, at the level of rules and regulations, atthe level of incentives. It’s not a surfacephenomenon. For example, one of theimplications for providers working within a

recovery framework thatdefines recovery as amatter of autonomy, isto make sure that we arenot at the same timeholding providersresponsible for theautonomous choices thatclients make. Whenpeople are responsible forothers’ choices it’s onlynatural that they aregoing to try to get themto make what theythemselves perceive as theright choices. I guess my

response to your question is that the mental healthservices sector has to do some work to define whatit means by recovery, and then ensure that thestructures in place are consistent with thatdefinition.

An analysis ofnumerous accountsby consumers ofmental healthservices whodescribe themselvesas “being inrecovery” or “on ajourney of recovery”suggests that the keyinternal conditionsin this process arehope, healing,empowerment andconnection. Theexternal conditionsthat define recoveryare human rights,“a positive cultureof healing” andrecovery-orientedservices.What Is Recovery? A ConceptualModel andExplicationNORA JACOBSON, PH.D.,DIANNE GREENLEY,M.S.W., J.D.

“To me, a recovery paradigm is each person’sunique experience of their road to recovery.There are similarities around themes orshared skills and experiences, but it is in facta very individual experience which is notpossible to etch in stone. It is more theembracing of the belief that recovery ispossible and from that premise each personindividually creating their own journey.”AMY K. LONG: Reflections on Recovery

“[Recovery is] a deeply personal, uniqueprocess of changing one’s attitudes, values,feelings, goals, skills and/or roles. It is away of living a satisfying, hopeful andcontributing life even with limitationscaused by illness. Recovery involves thedevelopment of new meaning and purpose inone’s life as one grows beyond the catastrophiceffects of mental illness.”WI L L I A M A. AN T H O N Y: Recovery from Mental Illness: TheGuiding Vision of the Mental Health Service System in the 1990s


Jean, could you talk about your childhood and how you’ve struggled to define whatrecovery means for you?JEAN JOHNSON: As a child I was badly abused to the point where I did not developcognitively as well as I should have. When I was a young woman I became very depressedand at 23 years of age was put into the hospital and given shock therapy. This absolutelydevastated me, I came out of the treatment having no idea of who I was. The shocktreatment continued, and it has taken me many years to recover from treatment that wassupposed to help me. I was also drugged very heavily when I was ill, to the extent that I wasreally not aware of a whole lot that was going on around me. It’s been a constant struggleto recover. I married, raised two children and worked very hard. A key factor in my recoveryprocess was when I stayed at a Buddhist monastery for a month. I’ve been a practisingBuddhist now for 11 years, and the meditation has helped my recovery process. I alsostudied at McMaster University, became an artist and presented my work in England. I havealso written a great deal of poetry that has been published. My recovery has been very slow,very hard, very painful. I’ve had seizures. I’ve had times when I would lock myself in the

TH E ROA D T O RE C OV E RY:

AP e r s o n a l

J o u r n eyFrom her experiences as an abused child whichled to years of psychiatric treatment andmedication, to the fulfilment she now finds inher art and poetry, Jean Johnson describes herown personal, ongoing journey of recovery.

“To return renewed with an enriched perspective of the human condition is themajor benefit of recovery. To return at peace, with yourself, your experience, yourworld, and your God, is the major joy of your recovery.”GRANGER, 1994, P. 10



closet and scream from the emotional pain. Theonly way that I can define recovery is that I have toreally believe in myself. I have had to havecomplete belief in myself even at times whennobody else has believed in me.

In a paper written by Dr. Nora Jacobson onrecovery, she wrote that hope was one of the keyinternal conditions that consumers of mentalhealth services talk about when describing theirjourney of recovery. The belief you had inyourself, did that give you hope?JEAN JOHNSON: Yes, believing in myself gave methat hope that I was going to get through whatwas happening to me. It’sso hard to makesomebody believe inthemselves – you can’treally do that but you canencourage people. Mybelief in myself enabledme to never give up, tokeep working as hard as Icould. My idea of recoveryis not ‘I’m okay now I canstop doing what I’mdoing, I’m where I wantto be’. I don’t thinkanybody, whether theyhave a mental illness ornot, ever reaches a pointwhere they are ‘okay’. We are always evolving,always working towards that goal. One tool that Ihave used in my recovery is writing. I havejournaled for about 15 years, journaling mythoughts, my feelings, asking questions andanswering the questions. Sometimes writing aboutmy experiences has made them feel more real, itwas as if I was re-experiencing them. I’ve also donea lot of deep meditation, and of course mypainting has been really important to me. I paintpeople, their expressions, and I learn a lot from mywork, from the paintings I produce. Also when Ihave an opening or an exhibition I feel reallyproud of what I’ve done and I have an enormousamount of respect for myself.

It’s been said that people who have psychiatricdisabilities often find that they lose their“selves” inside mental illness. From whatyou’re saying it sounds very much as thoughyou have re-discovered your “self” through yourpoetry and painting.JEAN JOHNSON: That’s true. I think I lost myselfwhen I had the electroconvulsive therapy and thedrugs. The meditation was what helped me togradually come off of all the drugs I was on after Icame back from the monastery. Another point onthe journey towards recovery for me was when Iconfronted one of the people who had abused meso badly and told him I never wanted to see or

hear from him again.That was a pivotal pointin my recovery, it was liketaking the world off myshoulders.

Was that anempowerment issue foryou when youconfronted them?JEAN JOHNSON: I wouldsay it was anempowerment issue. Ibegan to take charge ofmy life. I am stillrecovering – I am stilljournaling and painting. I

am thinking of working with other people andmaybe teaching them art. I also presented my workin England at two mental health conferences acouple of years ago, so I keep very busy. Having amental illness is such an insidious thing to livethrough in terms of other people because of thestigma attached to it and because of how otherpeople think of those who have a mental illness.They say and do things to people that they wouldnever think of doing to someone who hasn’tsuffered with a mental illness. And some peoplearen’t strong enough or they don’t believe enoughin themselves to stand up to it and say ‘I don’tdeserve that’. I am very careful about what I allowother people to say to me. If somebody is verballyabusing me, calling me a name or something, I

“Recovery is a process, a way of life, anattitude and a way of approaching the day’schallenges. It is not a perfectly linear process.At times our course is erratic and we falter,slide back, regroup and start again... Theneed is to meet the challenge of the disabilityand to reestablish a new and valued sense ofintegrity and purpose within and beyond thelimits of the disability; the aspiration is tolive, work and love in a community in whichone makes a significant contribution.”PATRICIA E. DEEGAN

The Road to Recovery: A Personal Journey


make sure I say something to them because I don’tfeel I deserve that and I won’t take it. Stigma is aterrible thing. I’ve been in periods of my life whereI’ve had nobody and I’ve had to be strong.

As you’ve pointed out, recovery is a continuingjourney and although somebody else can’t makeyou recover, they can provide an environmentin which it is easier for you to take those stepstowards recovery. You’ve mentioned stigma,but what are some other external conditionsthat are not helpful to someone who is on thisjourney?JEAN JOHNSON: I don’t think people need peoplewho don’t know what theyare talking about tellingthem what to be and whatto do. It’s like a child, youdon’t tell a child how toplay with a certain toy, youallow a child to evolve andgrow, and that I think isthe basis for recovery.Learning about oneself,accepting oneself – howcan we do that if someoneelse is telling us how to liveour life? I think in someways I was fortunate that my family virtuallydisowned me when I started talking about abuseissues and nobody wanted to hear about it. Attimes it was devastating not having anyone, but onthe other hand it was very empowering because Icould make my own decisions about how I wasgoing to recover and what I was going to do. AndI had a lot of very good friends in the mentalhealth field who took the place of family.

Do you think that things like dignity, trust,respect and love are typically given to peoplewith mental health disorders?JEAN JOHNSON: No I don’t. Ideally it would bewonderful to say yes they are, and I’m not sayingthat they are never given to people with mentalhealth issues, but in many cases they aren’t given.One example of what can happen when people areshown love and respect is a friend of mine who was

in university getting his masters degree in sciencewhen he was first diagnosed with schizophrenia.He was devastated. He was given shock therapyand he had to move in with his mother, but hismother loved him, looked after him and today he’smarried and he’s fine because he was given aprotective place to live. He was respected, givencompassion, and I would say he’s totally recovered.At one time he had lost everything but now he haseverything. He wasn’t hospitalized over and overagain because he had a safe place to live, decentfood to eat, he had health coverage and he hadsomeone showing him some respect.

Do you think there is adifference in the waythat people are treatedin general now in themental health fieldcompared to when youwere diagnosed andtreated?JEAN JOHNSON: I’m notreally involved in themental health services atall now. I know when Iwas recovering I wasgoing to the CMHA

drop-in centre and it was excellent. We playedcards and bingo and sat around and drank coffeeand talked about our doctors and our experiencesand we helped one another. That was a hugestepping stone for me to know that there wereother people who suffered with the same kind ofthing.

Dr. William A. Anthony, Executive Directorof the Center for Psychiatric Rehabilitation atBoston University says that recovery is “adeeply personal, unique process of changingone’s attitudes, values, feelings, goals, skillsand/or roles. It is a way of living a satisfying,hopeful and contributing life even withlimitations caused by illness.” JEAN JOHNSON: That’s a beautiful description ofwhat recovery should be for anyone. You know it’sinteresting, but when I was married my husband

“Having some hope is crucial to recovery;none of us would strive if we believed it afutile effort... I believe that if we confrontour illnesses with courage and struggle withour symptoms persistently, we can overcomeour handicaps to live independently, learnskills, and contribute to society, the societythat has traditionally abandoned us.”LEETE, 1989, P. 32


was always saying ‘I just want you to be happy andwell’, but the minute I would start getting well itwas like he would pick up a hammer and hit meover the head. People say that they want you toget well but when you begin to start taking stepsof showing wellness, that means they have tochange how they think of you, and there’s a lot ofambiguity in that area. I think they understand youwhen you are ill but when you start to get wellthey don’t know what to expect anymore. It maybe frightening for them. I sometimes say that Ihave recovered but my family hasn’t recoveredfrom my mental illness because if they were aroundme now theywouldn’t know howto react to me.

Have you come toterms with yourpast?JEAN JOHNSON: I amstill coming to termswith the past. I don’tthink we can ever saywe’ve accomplished it,we’ve done it. We areconstantly evolvingand growing and Ihave come to termswith what I have beenable to so far, but I’mstill working on that.For instance when Iam painting, and I puta canvas up on theeasel, sometimes I can feel the emotion almost as ifit is coming from the canvas to me – I learnsomething from every painting that I do. My lifenow, probably because of my Buddhist beliefs, myart, my journaling and writing, has a lot ofmeaning. More meaning maybe than some peoplewho have never had a mental illness. I am able tofunction at a very good level and deal withanything from the past that comes up. But I dohave to live a very structured kind of life. I have toknow my limitations and I have to be reallydiligent about not doing something that could

cause me to become really upset or put me into aposition where I may not do very well.

Do you have supportive relationships in yourlife Jean?JEAN JOHNSON: Yes, I have many good friendswho are very supportive. People who know mewell know what I’ve come through, and I reallybelieve that they respect me, especially when I do apresentation. I have a lot of poetry I read, and Ishow my paintings on an overhead, and it’s veryfulfilling. I feel that I am doing somethingworthwhile. I learn from the audience and they

learn from me.Sometimes peopleare brought to tearsbecause the poetrycan be veryemotional, but it’s avery worthwhileexperience.

If you were able tohave some inputinto revamping themental healthsystem so that itbecame morerecovery-orientedwhat are some ofthe things youwould like to see inplace?JEAN JOHNSON: Ithink one thing Iwould emphasize is

believing people when someone is reflecting onwhere they are at in their life, how they are doing.Believing that is exactly who they think they are atthat point and respecting what they have to sayabout themselves and respecting what they need. Aworker does not know better than the consumerwhat they need – it’s impossible for them to know.That kind of respect leads to belief in ourself andbelief in our ability to move towards recovery.

NOT EVEN THE NIGHT AIR IN SUMMERTIME

Harsh words make me want to hideinside of bones that reach up

and live in my senses.They are brittle and barren now.

They carry the scenes of my younger years,along with the clutter of coloured threads,

that wrap these bones holding them in place.

Sometimes I think I will lose myselfonce again inside of these bones,where I am safe and soundless

and nothing hears me,not even the night air in summertime.

In the morning I will look out of these bonesand walk barefoot feeling the warmth of the sidewalk

on the palms of my feetand my bones will rattle like crickets

in the night air in summertime.JEAN JOHNSON


Let me read you a quote from Patricia Deegan from an address she gave at The SixthAnnual Mental Health Services Conference of Australia and New Zealand: “It isnot our job to pass judgment on who will and will not recover from mental illness andthe spirit breaking effects of poverty, stigma, dehumanization, degradation andlearned helplessness. Rather our job is to participate in a conspiracy of hope...to forma community of hope which surrounds people with psychiatric disabilities...” As wemove towards a new vision of mental health services grounded in the idea that peoplecan recover, how do we put in place this kind of environment?MICHAEL WILSON: The recovery process itself starts with the individual. I think it was bestput by one of the people who presented to us. He showed a circle, and then another circlewithin that circle, and said that in the depths of mental illness the bigger circle is the illnessand the smaller circle is the individual. The recovery process starts as the individual sees himor herself as the bigger circle and the smaller circle as the illness. We also have to recognizethe importance of family, close friends and other social networks as being the immediatesupports that will give that individual the confidence, the sense of independence, that candevelop the ‘community of hope’ that Patricia Deegan spoke about in the quote you read tome. Obviously clinical supports, the right medication, support from psychiatrists, socialworkers and other support groups are important for that individual. Two other veryimportant components are having a home and having a job, or some other occupation that

S h aping a Recove r y

P h i l o s o p h y

The Honourable Michael Wilson, Chair, Toronto-Peel Mental HealthImplementation Task Force and Vice-Chair, ProvincialMental Health Implementation Task Force Forum, is thePresident and Chief Executive Officer of Brinson CanadaCo. Mr. Wilson has held senior federal cabinet posts withthe Government of Canada in Finance, Industry,Science and Technology and International Trade, andis director of a number of companies, including BP p.l.c.and Manufacturers Life Insurance Company. He hasbeen active in a number of community organizationsin Canada and the United States including the Centrefor Addiction and Mental Health and the CanadianNeuroscience Partnership. He is also Senior Chairman ofthe Global Business and Economic Roundtable onAddictions and Mental Health and, in thatcapacity, has spoken frequently about mentalillness in the workplace.


will give a sense of involvement and associationwith others. So it’s a combination of things – wehave to have a receptive and supportivecommunity, and I use the word community in thebroadest sense.

Several people I have spoken to have made thepoint that there isn’t just one recovery modelbecause recovery means different thingsdepending on the individual. The Report of theU.S. Surgeon General* also makes this samepoint, “there is neither asingle agreed upondefinition nor a singleway to measurerecovery...”. How thenare we going to be able tomeasure whether we arein fact putting in placesystem standards that willbe consistent with thisnew vision of recovery?MICHAEL WILSON: You canmeasure your recovery froma broken leg when thebones have knit and you areable to walk withoutdiscomfort and start playingsports again. Mental illnessis different. There are somepeople who will have whatyou and I would describe asa full recovery. There areothers who would havewhat we could describe as afunctional recovery, wherethey could do a lot of things they did before andnot have any real effects from their mental illnessbut they know that it’s there, they know they haveto be careful and watch for signs of thingsreturning. And then there will be others who willbe continually affected by their illness. I think theimportance of the recovery philosophy is to allowpeople to recover the greatest amount of theircapacity to do things that they could before theysuffered from their illness; to allow them to achieveindependence and a quality of life that they didn’thave during their illness. But it will be the

individual who will be the judge of whether or nothe or she has recovered.

Do you think this is a difficult concept forpeople in the larger community to understand?We live in a society that wants to see everything‘fixed’. Can the general public understand thatrecovery does not necessarily mean perfection,but relates to the goals that each individualhas?MICHAEL WILSON: We may live in a world where

we want everything to beperfect but we alsorecognize that we live in aworld where there are veryfew things that are perfect.Perfection is not achievable.My wife just had a kneereplacement. She’s walkingwell, we played golf for thefirst time the other day, andshe’s very happy with theoperation. But are we goingto go skiing this winter?No! There is a limitation.She feels that she’s had agood recovery. She feels alot better and doesn’t havesome of the pain she hadbefore, but it’s certainly notperfect. I think we canunderstand that concept asit relates to mental illness.And in fact, that’s whatmakes the recoveryphilosophy so important in

breaking down old attitudes about mental illness –everyone can relate to having recovered or being inrecovery from something.

At what stage is the Task Force at in itsdeliberations? Who has it met with and whathas been discussed to date?MICHAEL WILSON: Well we’re at a fairly late stage.We started our work in January 2001 and havenow finished the first phase of our work which islooking at the various supports and services thatare in the mental health system. We had

“A recovery vision of service is groundedin the idea that people can recover frommental illness, and that the servicedelivery system must be constructed basedon this belief. In the past, mental healthsystems were based on the belief that peoplewith severe mental illness did not recover,and that the course of their illness wasessentially a deteriorative course, or atbest a maintenance course. As systemsstrive to create new initiatives consistentwith this new vision of recovery, newsystem standards are needed to guide thedevelopment of recovery oriented mentalhealth systems.”A Recovery-oriented Service System: Setting Some SystemLevel StandardsWILLIAM A. ANTHONY, PH.D., EXECUTIVE DIRECTOR

OF THE CENTER FOR PSYCHIATRIC REHABILITATION AT

BOSTON UNIVERSITY.


consultations in the spring of this year [2002]regarding the ideas we have to improve thedelivery of those services and supports. We havelooked at systemwide issues: how do we managethe new system? What sort of elements do we haveto have in the management of the system? We havelooked at some broad system-wide issues such ashuman resources issues, information technology,training of individuals, public education issues, aswell as issues relating to research and bestpractices. A second phase of our consultations isjust being completed, andwe are studying the resultsof all of the consultationsthat have taken place. Weplan to present our finalreport to the Minister inearly December.

So consumers and serviceproviders of all kindshave been involved inthese consultations?MICHAEL WILSON: InToronto and Peel Regionalone there have beenthousands of peopleinvolved either directly orindirectly in theseconsultations, so you canmultiply that by anotherfactor to get the numbersin the rest of Ontario.We’ve had people on theTask Force, people on thesub-committees, people onworking groups that werehelping sub-committees.We’ve had presentationsfrom consumer groups,from providers, from familygroups, from housing providers and fromhospitals. We’ve had consultations which haveinvolved many other people representing variouselements of the mental health system. In somecases, in our second phase of consultations, we hadrepresentations from a number of organizations, sothat while we maybe only had one or two people

physically present at the consultation, theyrepresented a range of other people who areinvolved in the mental health system. I have alsodone some visiting with various delivery levelorganizations, housing groups, and crisis groupsand we have people on the Task Force whose dayjob is in these types of organizations – familydoctors, psychiatrists, people from the Centre forAddiction and Mental Health (CAMH), housing,drop-in centres, consumer peer support groups – awhole range of people.

Dr. William Anthony,Executive Director of theCenter for PsychiatricRehabilitation at BostonUniversity lists nineessential services thatshould be present in arecovery-oriented system –treatment, crisisintervention, casemanagement,rehabilitation,enrichment, rightsprotection, basic support,self-help andwellness/prevention. Hasthe Task Force come upwith a list of essentialservices that they believeare necessary?MICHAEL WILSON: We arein the final stages of makingup our report, and we haveaddressed some of thosepoints. However, you haveto recognize that this is nota clinical document. We arenot telling doctors howthey should treat patients.

We are looking at the mental health system fromthe standpoint of the consumer: how do theyaccess the system? How do they find a doctor?How do they get to the hospital? How do they gettreatment in the emergency room? How do theyget a referral from the hospital to appropriatehousing supports? That’s the sort of work we are

“The concept of recovery is rooted in thesimple yet profound realization thatpeople who have been diagnosed withmental illness are human beings. Like apebble tossed into the centre of a still pool,this simple fact radiates in ever largerripples until every corner of academicand applied mental health science andclinical practice are affected. Those of uswho have been diagnosed are not objects tobe acted upon. We are fully humansubjects who can act and in acting,change our situation. We are humanbeings and we can speak for ourselves. Wehave a voice and can learn to use it. Wehave the right to be heard and listened to.We can become self-determining. We cantake a stand toward what is distressing tous and need not be passive victims of anillness. We can become experts in our ownjourney of recovery.”PATRICIA E. DEEGAN, PH.D.Recovery as a Journey of the HeartFirst published in the Psychiatric Rehabilitation Journal,1996 Vol. 19 No. 3


doing as opposed to saying, ‘here are a number ofthings that have to be done in the clinical supportof a mental health consumer’.

You mentioned that the Task Force has beendiscussing how to improve delivery of services.How will that be done? MICHAEL WILSON: You are asking a hugequestion. This is not going to be a short report.We have recommendationson how you access thesystem, recommendationson how those front lineservices and supportsshould interact with therest of the system. Whensomeone receives supportin a crisis situation wheredo they go from that point?We are recommendingways to link that individualat a crisis point with thenext stage along the way:how to link with peersupport, family supportgroups, consumerorganizations, consumerrun businesses, housing. We want to be able tomatch people to the degree of support that theyneed. We have done some work to show that atpresent there are people who receive moretreatment than they need and others who receiveless than they need. Sometimes a lot less. So we aretrying to get systems in place that will providebetter matching between the needs of consumersand what is available.

Let me end by reading you this quote, againfrom Nora Jacobson, from a paper entitledRecovery as Policy in Mental Health Services:“with vision statements in hand some statessimply rename their existing programs. Theactual services offered remain the same...thisrenaming process demonstrates a lack ofunderstanding of recovery, in particular afailure to acknowledge the necessity for a

fundamental shift towards sharing both powerand responsibility.” Are you confident that wewill end up with a true shift in the way mentalhealth services are structured and not just acosmetic ‘name change’?MICHAEL WILSON: Our intention was to adopt therecovery philosophy as the touchstone againstwhich to develop and test our recommendations.This recovery philosophy is a driving, fundamental

value, that we believeshould be followed as wedevelop these newapproaches to providingcare and support. There willbe changes proposed in oursystem. There will bechanges that draw onelements of the recoveryphilosophy because that isthe central guideline inwhat we are doing. If wecan make the changes thatallow the structures tosupport the recoveryphilosophy then I think weare doing a lot to move thesystem into that way of

thinking. The answer to your question is broaderthan the work of the Task Force, but you will seethat right up front in the report is our statement ofdedication to the recovery philosophy and we havetried to do things and make recommendations inthe Task Force report that will support that.

The final report of the Mental HealthImplementation Task Force will be presented tothe Minister in December.

*Mental Health: A Report of the Surgeon Generalcan be seen in its entirety atwww.surgeongeneral.gov/Library/MentalHealth/chapter 2/sec10.html

“The Task Force is committed to therecovery philosophy, with recovery beingdefined by the individual. Recovery issomething that is worked towards incollaboration with, and informed by,the expertise and support of the consumer,family members, peers, mental healthsupport workers and medicalprofessionals.”HON. MICHAEL WILSON

Chair, Toronto-Peel Mental Health ImplementationTask Force, Vice-Chair, Provincial Mental HealthImplementation Task Force Forum

CALENDAR

MARCH 21 - 30, 2003Madness and Arts 2003 World Festival – aunique gathering of more than 100 artists fromaround the globe – dancers, musicians, painters,actors, writers and performance artists – all withone thing in common: their work deals withmental health. Harbourfront Centre, 235Queens Quay West, Toronto.www.camh.net/madnessandarts/index.asp

MAY 20-23, 2003Anchored in Practice, Inspiring Hope –Canadian Counselling Association NationalConference 2003. Westin Hotel, Halifax, NovaScotia. For more information visit the website atwww.ccacchalifaxconference2003.ednet.ns.ca/or contact Laurie Edwards, Tel: 902-491-3529,Fax: 902-491-3538 or E-mail: [email protected]

MAY 29-31, 2003The Art, The Science and the Ethics,International Conference for Psychiatric andMental Health Nurses. Westin Prince Hotel,900 York Mills Road, Toronto, Ontario. Formore information contact Tel: 416-493-8062 orE-mail: [email protected].

SEPTEMBER 28 – OCTOBER 1, 2003Mental Health and Addictions Conference2003, sponsored by Canadian Mental HealthAssociation, Ontario Division, Centre forAddiction and Mental Health, OntarioFederation of Community Mental Health andAddictions Programs and Alcohol and DrugRecovery Association of Ontario. HiltonNiagara Falls Hotel, Niagara Falls, Ontario.For more information contact Rachel Gillooly,Tel. 705-454-8107, Toll-free: 877-372-2435,Fax 705-454-9792 or Email: [email protected]


MENTAL HEALTH WORKS• The World Health Organization has predicted that by the year 2020 depression will be second

only to heart disease as the leading contributor to the global burden of disease. • Claims for mental illness are now the fastest growing category of long-term disability in Canada.• Canada’s economy loses an estimated $21.4 billion annually due to lost productivity caused by

mental health problems.How we deal with mental health in the workplace is something that we can no longer afford to ignore.Mental Health Works helps organizations and individuals become part of the solution by:• Developing networks to exchange strategies and knowledge to address mental health issues in

the workplace • Providing access to the latest information for employers, employees and mental health

professionals about mental health in the workplace• Providing information on early identification, prevention, and accommodation• Developing and distributing training materials and information kits for employers and

employees • Collaborating with organizations to design and pilot training initiativesMental Health Works is a joint initiative of: • Canadian Mental Health Association, Ontario Division• Global Business and Economic Roundtable on Addiction and Mental Health• Ontario Ministry of CitizenshipIf you are interested in learning more about Mental Health Works – or about how you or yourorganization can get involved, contact:Miriam Ticoll, Director, Mental Health Worksc/o Canadian Mental Health Association, Ontario Division180 Dundas Street West, Suite 2301, Toronto, ON M5G 1Z8Ph: 416-977-5580 ext. 4120Fax: 416-977-2813Email: [email protected]

BIBLIOGRAPHYAVAILABLEAn extensivebibliography ofRecovery Resourcesprepared by BarbaraAdams, SeniorAnalyst andTeresa Croscup,Information Officer,Canadian MentalHealth Association,Ontario Division canbe found on theCMHA, OntarioDivision websitewww.ontario.cmha.caunder ‘PolicyDocuments’.

NetworkVol. 18 No. 3 WINTER 2003

180 Dundas Street West, Suite 2301Toronto, OntarioM5G 1Z8

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