PSY C lilAT RIC R£IIABILITAfiON IOllRNAI

RECOVERY AN D MENTAL IllNESS: ANALYSIS AND PERSONAL REflECTIONS

Anna Coodin Schiff

My strong desire to enter the helping profession has been fuelled by my experi­

ANNA (OOoIN SCHIFf. a .MUS.PERF. ences as a consumer-survivor of the mental health system who is recovered and is (UNIVERSITY OF TORONTO) , SSW (yORK UNIVERSln). IS CURRENTLY COMPLETING symptom-free_And yet, driven by concomitant hopes of changing the system AN MSW DEGREE IN MENTAL HEALTH AT THE UNIVERSITY Of ILLINOIS AT CHICAGO. under which I found my care and the care ofthose around me to be flawed at best, SHE 15 A CONSUMER-SURVIVOR. and in order to relate to both consumers and practitioners the need for a recoverY paradigm and for empowerment and hope, I found that in the academic world, I

FOR FURTHER INfORMATION CONTACT THE "passed." For fear of discrimination, tokenization, and the discreditation of my AUTHOR AT aschilf@hormai/,com ideas, I took on the role of practitioner-in-training, never disclosing my identity as a consumer-survivar, no matter how much I felt this unique perspective could can­ tribute to a discussion. I was torn. Had I not entered this field in order to bring about change and instill hope based on my storY? Feeling hypocritical, I nonethe­ less decided that it would be best to delay self-disclosure until I achieved profes­ sional status.

My decision to explore recovery in movement, in which I firmly believe. mental illness has necessitated self­ Finally, as someone who has been hid­ disclosure and an examination of my ing her identity because of an ability to own recovery. The recovery movement pass as someone without any experi­ belongs to consumers-survivors, not ence of mental illness but for whom to practitioners. As someone who self-disclosure is key to my field, this feels ownership of this by virtue of my paper affords me a safe place to reveal identity, it would be wrong for me to and discuss this part of myself. situate myself as an outsider in my re­ In this article I explore recovery from search. In writing about recovery, one mental illness. After offering an initial must locate one's identity as it relates definition of recovery, I outline the his­ to mental illness; it is called for. tory of the recovery movement, and Further, the movement gives more le­ discuss the role of consumer-profes­ gitimacy to lived experience than to sionals in recovery. I consider two key academic theories; to approach this features of the recovery model: its psy­ subject without usi ng my own knowl­ chosocial perspective and its humanis­ edge wou ld betray this aspect of the tic ideology. Through contrasting the

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•212 __--'-W I NHR 2004-VOLUME 27 NU M B£R 3 rehabilitation and empowerment views The movement began in the 19705 "diagnosis and prognosis are two dif­ of recovery and drawing on consumer when small groups of eX'patients, fu­ ferent dimensions of psychosis" definitions, I exa mine the question eled by a shared sense of anger and a (Vaillant in Harding et al., n.d., p. 1). "what is recovery?" I explore thoughts hope that they could bring about The recovery movement has gained on how people recover, analyzing my change, organized throughout the enough prominence to be noted by the story from the perspective of Young United States. The struggle has always 1999 Report of the Surgeon General. and Ensing's (1999) model of recovery. been political: its proponents have The National Mental Health Association Finally. I consider the sell, and how it is lought for the rights of people with (NMHA, 2000) is promoting a new pro· constantly being negotiated through· mental illness (Chamberlin, 1995). gram, Dialogue for Recovery, which fa· out illness and recovery. These groups were influenced by the cuses on promoting doctor-consumer black, gay, and women's liberation What is Recovery? An Initial Defi nition communication. While the program es · movements of the time. Non-patients Definitions of recovery from mental ill­ pouses much more conservative views were excluded from the organizations. ness are based on the experiences of than the recovery movement itself, it as consumers found that their radical consumer-survivors. Recovery is a nonetheless promotes a vision of pea· views on mental illness were not highly personal and unique process pie with mental illness functioning in shared by practitioners or by the gen­ that involves a renegotiation of one's the world, which goes against the eral public. These groups practiced feelings, values, goals, attitudes, prominent view that those with mental consciousness-raising to combat the skills, and roles (Anthony, 2000). While illness face progressive deterioration. internalized stigma that they confront­ some believe that full recovery from Thus, the recovery movement is begin­ ed. Traditional, medical model termi· mental illness is possible (Fisher, ning to force society to examine and nology. such as "patient," was n.d.a), others contend that recovery is renegotiate its current discourses of replaced with terms such as "con­ a lifelong process of accepting one's ill­ mental illness. sumer" (Chamberlin, 1990). ness, of not identifying oneself with Consumer-Professionals the illness, and of living up to one's fu ll The major principles of the movement The consumer movement provides a possibilities (Deegan, '993, in Munetz are empowerment, self-help, and advo· voice for consumers to speak about & Frese, 2001). cacy. Empowerment refers to the trans­ their experiences and to direct their formation from "passive service Th e Recovery Movement treatment. The role of consumers in recipient" (Chamberlin, '990, p. 330) Throughout the history of psychiatry helping other consumers, whether as to taking an active role in one's mental there have always been consumer-sur­ friends or as role models, is valued. health care. The concepl of self-help vivors who have spoken out against The recovery movement also urges con­ presents a means for empowerment their experiences, who have advocated sumers to be consu lted at every level through seeing oneself differently and for their rights and for humane treat­ of treatment, even at the structural interacting with the world in new ways. ment for those diagnosed with mental level of policy and program design Advocacy is meant to address prob­ illness. Among them in the mid- to late­ (Anthony, 2000). Prolessionals who are lems beyond the individual. It is to nineteenth century was Elizabeth also consumers, termed "prosumers" work for political change to benefit all Packard. Founder of the Anti-Insane by Frese (1997) are especially valued by those who face these issues Asylum Society, Packard published the proponents of the recovery paradigm, (Chamberlin, 1990). story of her forced institutionalization as prosumers are in positions to help by her husband. Similarly, in the mid­ Courtenay Harding's work in the 1980s and are also consumers themselves. twentieth century, Clifford Beers, an provided an empirical basis for the Prosumers are in a unique position to upper-class man who recovered from concept of recovery from serious men­ liaise between consumers and profes­ mental illness, went on to document tal illness (Anthony, 2000). Although it sionals. Professionals value learned the story of his horrific treatment and was previously thought to be degener­ experience over lived experience. and served on the National Committee on ative, Harding showed in a longitudinal a prosumer who has both types of ex­ Mental Hygiene (Chamberlin, 1990; study (and other studies have since perience is in a position to educate Dain, 1989; Frese & Davis, 1997). confirmed) that approximately two­ professionais about the lived experi­ However, the current recovery move­ thirds of patients diagnosed with ence of consumers, and can be taken ment is not rooted in this history schizophrenia recover (Harding, 2002). seriously by professionals because of (Chamberlin, '990; Dain, 1989)· Harding and others have shown that their credentials. Prosumers might also

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•213 PWCIiIATRIC RFII 'BIIITATI ON I OURNA L ______Recovery and Menta/Illness: Analysis and Personal Reflections be the only professional a consumer paired" (Fisher, '994, p. 913). In this Harding's longitudinal study (men­ will trust, as the consumer movement model, the consumer is a passive re­ tioned earlier) followed patients treat­ values lived experience. "Prosumers cipient of expert care. Fisher (n.d.b) ed at a Vermont hospital by George model a vision of participatory treat­ refers to this paradigm as a "machine Brooks, who developed and imple­ ment and recovery that includes people model": the medical model promotes mented a psychosocial rehabilitation with mental illness as full partners and an ideology of resolving psychological program In the mid-1950S (Harding, collaborators in their individual treat­ problems in a similar fashion to that in 2002), The great success of that pro­ ment and rehabilitation and in the de­ which one would solve the problem gram, reported in Harding's study and sign, delivery, and evaluation of mental of a broken down car. Further, the pro­ others, testifies to the positive effects health services" (Frese & Davis, '997, motion of a pessimistic prognosis in of considering mental illness from a P·245)· the D.S.M.-/V is a "destructive social psychosocial perspective. force," (Harding. 2002, p. 1) discourag­ Several years ago I volunteered with a A Humanistic Ideology ing hope in consumers. music therapist who worked with con­ The humanistic approach to treatment sumers in acute phases of illness. I did In contrast, the recovery model Is based emerged from existential philosophy. not disclose my identity as a survivor of on a system of health promotion in This ideological paradigm sees worker the mental health system, taking on which individuals actively define their and consumer in a relationship that is the role of the empathetic profession­ needs and collaborate with others in above all human, and views the human al-to-be. The music therapist comment­ their healing process. The individual is condition that is common to everyone ed on my ease at being with these considered not in the context of an ill­ as what allows the two to connect. The consumers in distress, and the calm ness as such, but rather in the context worker and consumer engage in an 1- that I projected. She also commented of a unique psychosocial experience Thou relationship, and not a subject­ on my comfort in silence; I never felt I (Fisher, 1994). object relationship. In this state of had to fill in the gaps wilh speech. humanization, the worker realizes that From the psychosocial perspective, While she may have attributed th is to at another time, her/his role and that people with mental illness are recover­ my personality or my sensitivity. I of the consumer could be reversed. The ing from many traumatic experiences. maintain that my behavior reflected my two work toward common goals, the in addition to the illness itself. The way profound empathy. When I was ill and worker never seeing her/himself as an the individual is treated in the mental in hospital, I longed for calm. I hated it expert of the consumer (Tropp, 1969). health system causes multiple trau­ when eager staff would ta lk my ear off. Anthony (2000) argues that consumers mas. as he or she faces negative pro­ I iust wanted someone to sit with me hold the key to their own recovery, and fessional attitudes; insufficient help; and nol to be afraid of me; to help me the role of professionals is one of facili­ programs and professionals that dis­ tune into someone else and to have tating this recovery. This deflation of empower and devalue the individual; someone tune into me. Who can do the "expert" Is a thoroughly humanis­ and side effects from psychopharma­ this better than someone who has tic notion. ceutical treatment. Further, consumers been there? face discrimination within society. and Deegan (1996). an articulate and are prone to both external and internal­ thoughtful consumer, practitioner, and The Recovery Model ized stigma (Spaniol. Gagne & Koehler. advocate of recovery, contemplates the 1999). These iatrogenic effects can be loss of hope thai consumers experi­ Two key features of the recovery more difficult to recover from than the ence that can appear as a lack of effort, model are its psychosocial perspective illness itself (Anthony, 2000). and the reactions of those around on mental illness and its humanistic them. The change in the person's be­ ideology. The psychosocial model of mental ill­ havior and presentation can be so pro­ ness highllghls the importance of the A Psychosocl al Pe rspective found. remarks Deegan, that one can individual's social role, and the extent The recovery model eschews the med­ question if the illness has eaten away to which it is interrupted by mental ill­ ical model of mental illness. in which the person's soul. It is in this state that ness. Accordingly, recovery must in­ the illness is defined. diagnosed, and consumers can be related 10 as their ill­ clude the development of supports to treated by an expert, and is seen as "a ness and not as themselves. Drawing help in re-establishing one's social defective chemical mechanism in the on the existential philosophy of Martin role, along with the development of patient's brain that needs to be re- Buber. Deegan argues that the I-Thou self-management skills (Fisher, n.d.a).

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•214 WII'. T IR 200'I -VOIUM I n I'JllMr,[R J relationship thus becomes an I-It rela­ Through analyzing the consumer defi­ Recovery-What Is It? tionship. She further suggests that in nitions of recovery from the National order to fulfill our own humanity, we What does it mean to be in recovery or Summit of Mental Health Consumers musl be compassionate and relate to to be recovered? Within the recovery and Survivors Recovery Plank ('999), I others as Thou and not It. "I become I paradigm, there are competing views found three major themes in their defi· by saying Thou," (Buber in Deegan, of what recovery means. The rehabilita­ nitions of recovery. 1996). The notion that not only do con· tion view suggests that mental illness 1. Recovery involves one's internal sumers deserve respect and compas­ is a permanent disability, and that re­ self. Consumers noted that know· sion, but that by treating them this way covery comes from learning to negoti­ ing oneself, believing in oneself, workers can realize their own humani· ate life and regain functioning in light being able to help oneself and oth· tYi that consumer and practitioner of this impairment (Fisher, n.d.a). ers, acceptance of self, loving one· alike learn and benefit from the rela· Proponents of the rehabilitation view self, spiritual wholeness, tionship; is an essential aspect of the consider themselves to be permanently integrating mind, body, and spirit, humanistic paradigm and, I argue, of in recovery once they have successfully and gaining self·confidence are all the recovery model. learned to live with their illness.loseph important to recovery. Fisher (n.d.b), a fully recovered con· Rogers, a consumer and activist in the 2 . Recovery involves one's social role. sumer, practitioner, and advocate of consumer movement, considers his re­ Consumers commented that being the recovery paradigm, argues that covery to be analogous to recovery able to use one's gifts and talents, emotional distress, no matter how se­ from alcoholism. He asserts that recov­ to be needed, and to be productive vere, should be seen as a human prob· ery must be continually maintained in are all part of recovery. lem, rather than as a mechanical order to avoid a relapse, and considers problem that needs adjusting by an ex­ himself to be currently in recovery from 3. Recovery involves the way one in· pert. Viewed as a human problem, his illness (Szegedy-Maszak, 2002). teracts with one's environment and emotional distress is no longer an ill­ In contrast, the empowerment vision of lives one's life. Consumers report­ ness to be fixed , but a human process recovery challenges the notion of per­ ed that enjoying life, taking reo that affects the entire body, mind, and manent mental illness. Currently pro· sponsibility, not giving up, having spirit. Harding argues that the medical moled by Daniel Fisher and the freedom, feeling safe, living a ful­ model of illness shou ld be replaced by National Empowerment Center, it sug­ filled and meaningful life, living "the view of a person with a life course gests that mental illness can be over­ with hope, and making connec­ of work and relationships, develop­ come completely. Proponents of the tions with others and with the mental lags and spots with episodes of empowerment vision see themselves world are all parts of recovery. illness included" (Harding, '994, p. as having recovered from their illness. How Do People Recover? ,63). According to this view, a person's Once they have gone through the Many years ago, with more diagnoses humanity is of utmost importance duro process of recovery, they are no longer than I care to remember (ranging from ing times of distress; they are not di· still recovering from the disorder major depression to schizoaffective vorced from their "illness." The focus (Szegedy·Maszak, 2002). disorder) and as many prognoses, with remains on the person. Consumer De finitions of Recovery more hospitalizations than I'd like to Finally, Spaniol, Gagne, and Koehler To me, being recovered means feeling list, I was trapped in the ach e of mental ('999) assert, "the goal of recovery is at peace, being happy, feeling comfort­ illness. Although I have many ideas to become more deeply human" (p. able in the world and with others, and about how I got there, what is of con ­ 4'0). They argue that "one of the main feeling hope for the future. It involves cern here is how I got out. There are benefits of utilizing recovery .. .is that it drawing on all my negative experiences several factors that I can identify that allows us to look at the whole person, to make me a better person. It means aided me in my recovery process. in all of his or her humanity, instead of not being afraid of who I am and what first and foremost was what kept me just at their illness" (p. 4'0). This no· I feel. It is about being able to take pos­ wanting to get better. I can attribute tlon of humanity that is so intrinsic to itive risks in life. It means not being this desire to two factors: the need to recovery is inextricably linked to the afraid to live in the present. It is about be out of a state of constant ache and humanistic ideology. knowing and being able to be who torment, and the passion I had to pur­

lam. sue a music career. 1 was in so much

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•2 15 rSYC HI ATRIC 1\1 H AB I LI TArI ON JOURNAL Recovery ond Mentalllfness: Analysis and Personal Reflections emotional pain that I spent most of my Taking control of my care, to whatever strong desire for change in the initial time alternately sobbing, numb, or extent I was able, was incredibly impor­ phase of recovery, something that was sleeping. Much like the way our bodies tant. For me this meant researching very strong in me and that I deem to aid us in our physical recovery, I think mental illness and medications so I have been essential in my recovery. I that somewhere within me an involun­ knew the doctors' lingo and could remember sitting in the smoking room tary mechanism kicked in in an attempt speak it with them, and was thereby in one hospital, surrounded by people to release me from my state of pain. able to advocate for myself. At one doing the same, trying desperately to This provided me, I think, with part of point I read my hospital chart, in which pass the time from one sleep to the my drive to end this experience. The an admitting doctor commented on my next. Some had spent most of their easiest thing for me to do to satisfy extensive use of medical terminology. lives like this: in constant fear of the this primitive need to avoid pain would Advocating for myself was especially present, resorting to smoking and have been to settle into a state of important with medications. I was ex· watching television. While I, too, spent numbness, which I might have done, tremely susceptible to certain side ef· much time staring at the television in but other circumstances, such as my fects and less so to others, so I would the common room, at a certain point I music, urged me to push forward. I research medications and find side ef­ was desperate for it to end, and be­ was, and am, a classical singer, and fect profiles that would best match my lieved it could. music played a remarkable role in my tolerances. Of course, doctors weren't The middle phase of recovery involves recovery. Not only did it push me to reo always receptive to this. But the times regaining what has been lost and mov­ cover, if only so I could get out of hos­ that I was able to get over the depths of ing forward (Young & Ensing, 1999). pital and pursue my musical education, my illness to begin recovery were the Self·empowerment is important in this but it was also a real form of therapy times that I chose my own medication. phase. I developed self-empowerment for me. Singing made me feel when I The doctors who would allow me to di­ as I took responsibility for my recovery would not allow myself to feel. It rect the course of my treatment saw me by researching illnesses and treat­ grounded me and connected me. It al­ as a person, even if they did not be­ ments and advocating for myself with lowed me to feel human when my Ill­ lieve in the possibility of recovery. My my doctors. The other aspect of self­ ness dehumanized me. It gave me a relationship with them was essential; empowerment is believing in oneself sense of purpose and a sense of the fu­ they reminded me of who I was and and being able to take risks, which I ture-a future beyond illness. I eventu· who I might become. did by going to university, unsure ally pursued my musical career at a As I grew stronger I went off to univer­ whether or not I'd manage. This phase fairly high level, convinced that it was sity, where I was able to develop parts of recovery is also one of learning and my calling. It was not until I had really of myself that I did not associate with self· redefinition. I went through this recovered, years after my hospitaliza' illness. I made friends tentatively and process as I went to university and real­ tions, that I parted from music as a ca­ allowed myself to develop my identity ized there was more to me than illness, reer. I was thankful for its help in my as a person, and not as a sufferer of and as I learned to reintegrate myself recovery, but I no longer needed it. illness. with my peers. At first, I felt like I had a Being in hospital with other consumers big secret that I was keepi ng from Young and Ensing (1999) have devel­ further motivated my recovery by ex­ everyone I met. No one knew my past, oped a tri-phase model of recovery, posing me to the realities of life with and assumed my teenage years were whose phases refiect my own journey. mental illness. I was a teenager at the similar to theirs, I have never lost this The first phase, initiating recovery, time, and made friends with con­ feeling, although it has dulled signifi­ comprises acknowledgment and ac­ sumers who had been sick for decades, cantly with time. ceptance of illness, desire and motiva­ who would share with me the dreams tion for change, and finding a source of As I began to feel more and more like they had had for their future at my age. hope and inspiration. As I described, illness was something In my past that I This revealed to me the sobering reality for me this process was facilitated by was recovering from, and that illness that if I did not change something,l my desire to pursue my music career, was no longer part of my identity (al­ could be in their place in thirty years, by the inspiration music brought me, though being a consumer·survivor al· talking about my dreams that would and by my stark realization that I was III ways will be), I began the process of never be realized. and could remain that way for many being comfortable in my own skin, years. Smith (2000) notes the role of a which was something I had never felt.

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216• WINTER 1004 VOLUM[ 27 NUMBER J

What kept me so determined to remain "us- them" mentality. Consequently, The self plays a mediating role among well was my commitment to my music. I our identity is challenged as we are many areas of functioning. A lower­ put it above everything else, using it as placed in the "them" category by virtue functioning self will produce an overall an excuse not to go out wilh people of a diagnosis. Because the popular lower level of functioning. (the smoke would bother my throat) conception of people with mental ill­ Consequently, when we are discon­ and as an excuse with myself: I told ness is of the mad deteriorating in back nected from our selves, we are unable myself I was fulfilled with my music. wards, we begin to imagine that this to move forward with our lives. The self But as other things in life started to be­ may very well be the prognosis to is thus the agent of recovery (Spaniol, come important to me, I realized the which we are destined. This first nego­ Gagne & Koehler, 1999). role that music was playing in my life. It tiation of the self, then, involves fitting It is clear that illness brings with it a had helped me to recover thus far, giv­ our diagnosis into our identity and trauma to the sense of self. The self, ing me hope, inspiration, discipline, challenging our preconceived notions then, needs to recover. There are four and even spirituality, but I no longer of what mental illness means. steps in the recovery of the self needed it; it was no longer me. As my Another way in which the self is chal­ (Strauss. 1992, in Spaniol, Gagne & recovery became more and more sta­ lenged is when we emerge from acute Koehler, 1999). The first step is to dis­ ble, I began to want to change careers; periods of illness. I found that in times cover a more active self. This involves I wanted to help consumers. And hence of acute illness I did not look in the mir­ the awareness that our actions influ­ my career change, my entry into social ror, and when I did, I did not really rec­ ence our lives, and that we can act in work. ognize myself. When I emerged from our own interests. The next step in­ Young and Ensing (1999) define the these periods I was changed, but I had volves taking stock of our selves. We final phase of recovery as improving been functioning as though I was not a begin to test out our strengths and feel the quality of one's life. One of the be­ part of myself. Consequently, I had to more comfortable in our selves through haviors of this stage involves striving become reacquainted with myself. This our actions. The third step is to put the to attain an overall sense of well· being, becomes more complicated when our self into action. At this stage we re­ which happened to me as I became physical appearance has changed. In claim our social roles, and confront more comfortable in myself and began my case. the drugs I was taking caused harmful discourses. The final step is to to care about things more and more. enormous weight gain, and I was in­ appeal to the self. At this stage, we feel Another behavior characteristic of this credibly uncomfortable with my physi­ empowered, and can count on the self phase is striving to reach new poten­ cal self. when needed. Throughout these four tials of higher functioning. By taking a stages, the fragility and vulnerability of As we recover, we come to terms with risk and acknowledging that music was the self gives way to a stronger, more the self that we have lost. For some, it a crutch, giving it up, and being able to secure self. is a self of innocence. For others, it is a change career paths, I have achieved a self that was on a path to a successful much higher level of functioning. Worth career. The self that we were, and Conclusion mentioning is that this phase of the thought that we would become, model specifically includes the desire This article has been an attempt for me changes paths when we become ill. For to help other consumers, something to process my own recovery while dis­ me, my self of teenage· hood is lost. My that was abundantly present in my covering and integrating the existing teenage years were spent with doctors recovery. recovery literature. It is my hope that in and consumers, fighting illness and understanding my own recovery, and in Renegotiations of the Self side effects. I was never a teenager in having the courage to draw on this ex­ There are many times in the course of the typical sense. perience as legitimate knowledge, I Illness and recovery during which our Spaniol, Gagne, and Koehler (1999) can advocate for the recovery model of sense of self is contested. When we are argue that "sickness in our culture al­ mental illness as a member of the pro­ first diagnosed, we must come to terms ters the sense of seW' (p. 411). Instead sumer community, uniquely situated as with the prevailing ideologies regard­ of accepting the self who we are when both a consumer and a professional. ing people with mental illness. These we are ill as our self, we reject it, as in ideologies segregate people with men­ "I am not feeling like myself." When ill­ tal illness from the rest of the popula­ ness becomes chronic, the person tion through the enforcement of an must negotiate this ill self as the self.

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•2 17 r .IYCIIIATRIC RlilABILI TArION IOU RNA L Recovery and Mental Illness: Analysis and Personal Reflections

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