International Journal of Psychosocial Rehabilitation
Making Meaning in a
Reflections on the Experience of (De) institutionalization
Marina Morrow, PhD
Faculty of Health Sciences, Simon Fraser University
Brenda Jamer, MSc
Simon Fraser University
Morrow M. & Jamer B. (2008). Making Meaning in a
‘Post-Institutional’ Age: Reflections on the Experience of
(De) institutionalization. International
Journal of Psychosocial Rehabilitation. 12 (2),
Marina Morrow, PhD
Faculty of Health Sciences
Simon Fraser University
East Academic Annex 2127 8888 University Drive
Burnaby, BC V5A 1S6 Canada
This article examines the narratives of people diagnosed with
psychiatric illness about their experiences of institutionalization in
the context of mental health reform and deinstitutionalization in
British Columbia, Canada. Listening to the stories of psychiatric
patients reveals that their experiences of care are not shaped so much
by changing models of care but rather by the degree to which they
experience the ability to have control over their lives. The
authors conclude that finding ways to listen to and interpret the
experiences of people with mental illness is critically important in
the context of mental health reforms and the development of new models
deinstitutionalization, recovery, narratives of psychiatric survivors.
The study and analysis of narratives of disease, disability and trauma
is a burgeoning field with a range of disciplinary adherents (Frank,
1995; Raoul, Canam, Henderson & Paterson, 2007; Clarke, Febbraro,
Hatzipantelis & Nelson, 2005, Appelton, 2000). In the foregoing
discussion we contribute to this growing body of multidisciplinary
literature through the examination of the narratives of people
diagnosed with psychiatric illnesses who shared with us their
experiences of institutionalization. We concur with narrative scholars
that examining the life stories of stigmatized individuals can be a
catalyst for advocacy and social change (Raoul, et al., 2007; Dossa,
2002; Rodrigues del Barrio, 2007).
The history of psychiatry and treatment of people with serious mental
illness has been told as one of progress fueled by newer drugs and
better models of care. Yet, this history of linear progress has also
been contested (Moran & Wright, 2006) making it imperative to
give voice to the “objects” of psychiatry both for what this can reveal
in terms of cultural meta-narratives and counter-narratives of
psychiatry and for how these stories can inform improved social
responses to people in mental distress.
Psychiatric discourse obscures contextual factors that may contribute
to people’s experiences of distress, including the ways in which social
determinants like gender, race, ethnicity, sexuality and poverty
disadvantage psychiatric survivors. Further, within this paradigm there
is little space for recognizing the experiences of people with mental
illnesses. This is the case despite the fact Canadian policy documents
emphasize the need for involving consumers in the planning of mental
health care (BC Ministry of Health, 2002, Kirby, 2006, BC Ministry of
In the current Canadian context, listening to the stories of people
with experiences of long-term institutionalization is meant to
contribute to the ongoing dialogue about how to foster recovery for
people and to add to the body of literature that details the ways in
which mental illness may be experienced differently by women and men in
their various social locations.
The subject of our analysis is the experiences of individuals who have
recently (since 2002) been transferred from British Columbia’s large
provincial psychiatric institution (Riverview Psychiatric Hospital-RVH)
to smaller tertiary and other supported living arrangements throughout
BC. Although psychiatric deinstitutionalization is a process
which began in Europe and North America in the late 1950s and peaked in
the 70s, the process was slowed, in part, because of the abysmal
failure on the part of governments to provide community based supports
to people leaving institutions, including adequate housing and sources
These limitations, notwithstanding, deinstitutionalization held out the
promise of a new approach to mental illness- one that would ‘return’
individuals to citizenship and independent lives.
Deinstitutionalization in the Canadian context has continued to unfold
but with new resources and new models of care in place. In BC
individuals and financial resources are now transferred from RVH to a
variety of levels of housing and care across the province.
In this shift, custodial care models are being replaced with
psycho-social rehabilitation models of care (PSR). These “new”
models of care have been lauded by the government, policy makers and
those overseeing and implementing the changes as ‘visionary’ (Interior
Health, 2006; BC Mental Health and Addictions Services, 2007). Indeed,
preliminary findings from a tracking study of patients suggest that
individuals’ quality of life has generally improved in the new
facilities (Groden, Lesage, Ohana, Goldner, 2006). However, these
findings are derived primarily from clinical data rather than from an
understanding of the process and how it is experienced by patients.
Research which honours the voices and range of interests and abilities
of people living with mental illness has been rare and provides an
opportunity to reflect on current changes in care with the goal of
further advancing recovery models which have at their centre the goal
that people regain control over their life choices.
This paper draws on interviews with seventeen mental health care
recipients (nine women and eight men) about their experiences of being
transferred from RVH. We show that attending to these experiences
reveals a disjuncture between the views of the architects of care and
those for whom the care is designed. Listening to the stories of
psychiatric patients reveals that their experiences of care are not
shaped so much by changing models of care and newer and more pleasing
facilities but rather by the degree to which they experience the
ability to have control over their lives. Thus, these stories contain
important lessons about the unintended consequences of care and how
care is taken up or experienced by people with mental illness
(Rodrigues del Barrio, 2007).
In particular, the voices of people diagnosed with mental illness are
often not taken into account because of the difficulty in making sense
of their narratives which may be fragmented and non-linear (Clarke, et
al., 2005). Here we provide an analytic frame for making sense of
fragmentation in order to respond to the practical and political
imperative of involving psychiatric survivor voices. Fragmentation in
this instance, illuminates the nature of lived experiences, that is,
the fragmentation of the lives of people with mental illness is
reflected in how they talk about their lives (Appleton, 2000).
First person accounts of mental illness in the North American
literature are common (Blackbridge 1996. 1997; Capponi, 2003; Millet
1990; Nana-Ama Danquah 1999) most often written during periods of
wellness, these stories serve the purpose of providing insights into
the experience of mental illness and in some cases stand as critiques
of psychiatry and institutional care.
A further approach is that taken by people who have not been
‘psychiatrized’ but who analyze narratives of mental illness second
hand (Schneider, 2007; Schneider, 2003; Rodriguez del Barrio, 2007;
Clarke, et al., 2005). This work is varied in its focus, but for our
purposes Rodriquez del Barrio’s (2007) project is most pertinent.
Through the examination of one individual’s narrative of their
experience of psychosis her intent is to discover the meaning that
support systems take on in relation to the inner worlds of people and
to illustrate how they are multifaceted and contradictory. In an effort
to make sense of the narrative Rodriquez del Barrio (2007) contrasts
chronological narrative discourse with ‘space discourse’ that
prioritizes the use of metaphors and defies narrative logic (p.
The recognition that the narratives of people with mental illness do
not always proceed in chronological story-telling fashion also inspired
Clark, et al., (2005) to reexamine narratives about psychiatric
survivors’ experiences of supportive housing that they had originally
analyzed using a standard qualitative categorical framework (Nelson,
Clarke, Febbraro & Hatzipantelis, 2005). These authors ‘trouble’
the use of categorical frameworks because of the ways in which the
narratives of the people they spoke with defied easy classification.
Specifically, they note that the chronology shared by their
participants “was frequently circular and fragmented” which upset their
assumptions that people will tell stories in a linear, rational and
systematic fashion (Clarke, et al, 2005, p. 924).
Clarke et al., (2005) use the concept of ‘braided’ time to capture how
in the stories of the psychiatric survivors they interviewed, “…the
beginning, the middle, and the end are wound around and circle back
onto one another the way that braided hair does” (p. 924).
Further, Clarke, et al., (2005) note that in their initial analysis
they assumed that lives “are describable and explainable through
certain common stages beginning with childhood, moving through
adulthood and then after supportive housing” (p. 925) what they
discovered instead, was that their participants’ had much more
idiosyncratic ideas about connections between events. In the end
Clarke, et al., (2005) discuss the possible uses of a poetic
representation of social experience to better represent “…individuals’
experiences of human suffering, strengths and hope” (p. 928).
The work of these scholars resonates with our own experiences of
interviewing people with psychiatric illness and with our struggle to
give voice to our participants’ experiences while at the same time
wanting those experiences to have utility with respect to informing
mental health care. As such, in our analysis we adopt an analytic frame
which appreciates the fragmentation of our participants’ narratives and
sees emergent meaning in the ways in which people tell their stories as
much as in what people say.
In what follows we present sections of the narratives of the
individual’s we interviewed, where they spoke about their experiences
of moving from RVH to their current care facility. Individuals
reflected on their experience of the move and their current housing
situation. The interview included questions about safety/security,
privacy, meal preparation and household chores, relationships with
family and friends, outside work or activities and community
interactions. Each interview was conducted in person by a member of the
research team and participants were offered an honorarium for
their participation. Interviews ranged in length from fifteen to sixty
minutes. Data was organized into twenty one categories and eventually
collapsed into four clusters: Internal States of Being, Experiencing
the Move, Activities, and Relationships, which formed the foundation
for the following analysis. In our work we understand gender and other
social locations (class, race, ethnicity, culture and sexuality) to be
critical to understanding individual experiences in a larger social
context. Thus in our analysis we applied an intersectional framework
when examining the transcripts (Cuádraz, Holguín, Uttal,
1999; Varcoe, Hankivsky, Morrow, 2007).
Life in the Institution
In order to set the stage for a more in-depth discussion of the stories
we gathered in the course of our research, we begin this section by
painting a picture of what contemporary institutional care in new and
newly renovated facilities in BC looks like. We provide this context,
in part, to counter pervasive beliefs about institutional care that may
no longer accurately reflect the reality of current care models.
Historical documentation in Canada about asylum care reveals that the
experience of institutional care is complex and sometimes contradictory
and that what has been missing are detailed accounts from the
perspectives of patients themselves (Moran & Wright, 2006).
Prior to the deinstitutionalization movement of the 50s and 60s large
psychiatric hospitals had mostly become warehouses for people with
mental illness and worked primarily from a custodial model of care in
which patients’ lives were subject to institutional routines and
patients were given little control over decision making and goal
setting. Contemporarily, models of rehabilitative care continue
to be experimented with and now most practitioners concur that large
asylums are ill-suited to PSR models both because of the ways in which
they are physically configured and because staff training may not be
In BC, individuals leaving RVH are housed in an array of possible
living situations. Most patients have been transferred to smaller
tertiary units, existing nursing homes and/or other forms of supported
living . Decisions about where people would be moved were based on a
number of considerations but one of the primary ones was whether a move
would bring people closer to their families .
The two facilities in which we conducted most of our interviews include
a new tertiary care facility (Facility X) that houses up to 40 people.
The design of the facility is meant to optimize patient and staff
interaction and the open door policy means that residents can freely
leave to activities in the community and family and friends can
visit easily. Each floor of this facility is set up in ‘pods’ centered
around a kitchen facility, where residents have their own bedrooms are
expected to take responsibility for meals and other household chores.
Although few rehabilitative opportunities outside of learning to cope
with basic daily activities exist in this facility, residents do have
access to a garden program onsite where they are paid for their
The second facility (Facility Y) is a newly renovated 14 bed facility
that has a lower level of staffing than facility X. In this facility
individuals are meant to be self-sufficient in all of their activities
of daily living. There are no onsite rehabilitative activities,
although residents have access to an occupational therapist and to
activities in the community.
Managers of the facilities describe their model of care as PSR and
emphasize that their care fosters autonomy and independence. Patients
are encouraged to interact as much as possible with the surrounding
community and to go outside of the institution for all services.
Although these institutions provide standard, traditional psychiatric
treatment (symptom management through psychotropic drugs) they do not
use seclusion rooms or physical restraints. Staff and management
emphasized that the care provided stands in stark contrast to the care
model in RVH, which was described as custodial.
Internal States of Being
We begin the discussion of our findings with an excerpt from an
interview with Tyler which illustrates the fragmented nature of
the stories we gathered and provides insight into how he experiences
T: I just don’t want to slide. You
know, like go down a hill. Once you’re all the way up at the top, don’t
I: Ohh. Is that a little bit how sometimes it feels?
T: That’s how schizophrenia is. You go up there and then you fall back
down. You’ve got to be careful.
I: Do you know what helps you from sliding back down?
T: I don’t know. Just being aware of your surroundings, watch out what
people do to you, yeah. (Tyler)
This kind of awareness was also reflected in Quinn’s narrative where he
expresses frustration about workers who were trying to engage him in
Yeah. We’re in a different world. And it’s hard for us to…sometimes our
worlds, they sort of come together. It peeves me even when, I’ll say
world end, normal world, even when you try to show us in our best
light, they insult us. Without meaning to, you know, they don’t mean
to, but they’re looking up and saying ‘See, look what you can do with
your life, even if you have a mental illness?’ Well, I am sorry buddy,
I’m the one with the mental illness, you know, not you. It really is a
These passages say something about the inner life worlds of people with
psychiatric illness and emphasize the distance felt between the
individual and the so-called ‘normal’ world.
Experiences of the Move
The move from RVH to newly designed and renovated facilities were not
meant to be permanent moves for most individuals. In the new model of
deinstitutionalization people are meant to ‘move through’ facilities to
increasing levels of independence. Reflecting this, more than half of
the people we interviewed have lived in more than one residence, with
two women moving at least three times. People are moved according to
the level of care required and the types of services available. Thus
care is organized around facilities, rather than individuals. While
this fits in with the mandate of facilities, frequent moves were
sometimes experienced by people as highly stressful.
In reflecting on their new residences most (three quarters) indicated
that they like where they live currently, although almost one third
commented on ways in which they found even this new form of
institutional life difficult, focusing on the ways in which their
freedoms continued to be curtailed.
In reflecting on their experiences of the transfer process people
emphasized different things, Beth, for example, describes how, despite
the move to a new facility with more privacy and ostensibly more
opportunities to make autonomous decisions, having a mental illness
limits her freedom and makes her vigilant:
So, based on privileges I think, like it’s a privilege for me to be
able to sit out here on this bench right now, because if I did
something too wrong, I could be hauled back inside, transported away
from here, you know, and put locked up in a little cell. And you
know, no possessions, no nothing, you know. And it’s crazy to
think that that’s possible, but anything’s possible... (Beth)
Beth’s comment shows her awareness of how tenuous her circumstances are
and how little control she has over her day to day life. If she does
something ‘too wrong’ her rights will be removed and she could be
transported away to somewhere with even fewer freedoms.
In the transition from RVH, many individuals that we spoke to were
experiencing, for the first time in many years, the opportunity to make
decisions and carry out day to day routine tasks on their own. One man
notes the complexity of how he experienced the change. He describes
missing what he is familiar with, the routine of RVH and knowing how
the system works, while at the same time acknowledging that given a
choice, he would prefer to grow beyond his current level of functioning:
I don’t know if I noticed how they’re treated at X facility or versus
Riverview, but I know for my own self, when I first got here I kind of
missed Riverview in a way, because I was that close to becoming
institutionalized, you know, like being totally dependent on the
system, eh. I really didn’t want to end up that way.
Overall in reflecting on their new living situations it was clear that
individuals were looking forward to a time when they were able to have
a ‘real’ home, one that allowed them to live outside of institutional
care. This was particularly significant for respondents who had been
isolated from their cultural communities for long periods of time.
Mary, an Aboriginal woman, had this wish for her future:
I: What about, and if you were to think
from five years from now, what would you like to be doing?
M: Going home.
I: Going home. Going back to X [name of Aboriginal community].
M: Going home.
I: Yeah. Do you have family there still?
M: Yeah, my brother, my mum’s brother is the Chief. (Mary)
These passages take on a particular poignancy in view of the fact that
despite the intention that people move through facilities the reality
is that there are limited housing options for people with mental
illness in their communities and so many will remain in institutional
forms of care even after they are capable of living independently.
Ultimately, changing models of care and more aesthetically pleasing
facilities may have less of an impact on individuals than the degree to
which they experience the ability to have control over their lives and
The emphasis in the facilities where we interviewed individuals was on
assisting people with basic activities of daily living (cooking,
cleaning, hygiene, money management, etc.,). Most individuals seemed to
spend the better part of each day accomplishing these activities.
However, they also had access to volunteer and paid work in specialized
settings and to a range of recreational activities and outings on a
regular basis. Activities mentioned were diverse and included: going to
the local clubhouse, swimming, camping, playing volleyball, pub nights,
social dinners, smoking, watching TV and bingo.
In our interaction with respondents and in our observations, we found
that the degree to which individuals were engaged in activities was in
part dependent on their overall level of mental well-being. Thus, some
individuals appeared very listless, confused and lethargic, while
others seemed to be more highly engaged in activities and socializing.
Gendered differences did not always predictably follow traditional
gendered roles. For example, in some instances it seemed that women
were more engaged in household chores like cooking and laundry than
men, but staff reports suggest that participation in these activities
may have had more to do with level of wellness than gender per se.
A theme running through the interviews was a desire to have meaningful
activity and especially paid work opportunities. Robert indicated:
Oh, I’ve had all slavery jobs and you
know, when I was out in Coquitlam, and I’ve never really had like a
full-time on the outside (job), because I’ve never had chances to have
one, if you understand what I’m saying. (Robert)
Those who did have paid work opportunities spoke positively about them.
Sylvester had this to say about himself:
I: Oh, okay, alright. So one of the
things that we usually just start with is if you could just tell me
what a typical day looks like for you here?
S: A typical day is a workday on Monday, Wednesday and Friday. I love
working with that.
I: Okay. Loves working. I am getting it on tape as well.
S: That’s okay. Sylvester loves working as much as he can.
I: Oh that’s great! And could you work at X more if you wanted to?
S: No, just Monday, Wednesday and Friday. (Sylvester)
The desire for work was tied to concerns about having enough money or
feeling limited or controlled regarding the use of their money:
I: Why is Riverview better?
L: Well, I got a package of cigarettes every day and $34 a week.
L: Here I get $200 a month. That’s not enough to smoke on.
I: Oh, I see. Do you get it all at the end of the month kind of thing?
L: I get $25 on Tuesday and $25 on Friday. I can’t even buy the carton
and get it cheaper. (Lucas)
Overall, most of our respondents reported that they liked the
flexibility they have in their new facilities and enjoy getting up when
they want, eating when and what they want, and being able to go to
local businesses and shops. However, this was attenuated by stories
that illustrated the lack of concrete opportunities for meaningful
activity, especially paid work and the ability to attain higher levels
Relationships with Others
In this category we clustered themes that referenced intimacy with
family, friends, staff, and discussion about community contacts.
Sixteen people had answers coded here, nine of whom were women. Fully
one third of mental health care recipients that we spoke with indicated
that they do not have contact with their family or with visitors. In
their transfer from RVH, contrary to transfer guidelines, some appear
to have been moved further away from family, while others had been long
estranged from family members and friends.
Four people describe family relationships that seemed quite close. More
women (9) than men (3) seem to have connections with family,
particularly children, whereas men seemed to express more longing for
sex and intimate partner relationships. Themes in several individual’s
stories revealed a strengthening of connection with their ethnic
communities as a result of the move.
Beth was an example of a woman who was struggling hard to maintain a
relationship with her children. In the following passage she expresses
her desire to be with her children and how this is motivating her to
Yeah, yeah. I’m not going to cling to anybody to get me through this
life, you know. I want my kids, you know, be able to talk to me and not
feel like something’s wrong, I don’t want them to feel like yeah, this
person’s just a chronic, you know, sad person. (Beth)
Two women and two men seem to have good friends and yet only one man
described comfort with the quality of his friendships. Instead several
of the men talked longingly about their desire for intimate female
companionship. Terry’s interview, for example, had numerous references
to his interest in women but also his concerns about being sexually
appropriate. In contrast Sylvester spoke mostly about missing his wife
whom he described himself as estranged from. In the following excerpt
the interviewer probes at to why Sylvester misses RVH:
S: I loved it there.
I: You loved it at Riverview?
S: Yeah, because I got to see my wife at Riverview, she’s out in
I: Oh, and where is your wife now?
S: She’s in __________.
S: And I haven’t seen her, I haven’t seen [wife’s name] here now in
nearly four years. (Sylvester)
In some instances men indicated they enjoyed having female staff care
for them because this fulfilled some of their need for female
I: Okay. So who takes care of you the
most here? Is it a man or a woman?
R: Well, I prefer a female rather than a male.
I: How come?
R: Because I’ve never been married in my life, and I’ve never had a
chance to. (Robert)
It was clear that relationships for the individuals we interviewed were
often fraught because of long-term estrangement from family and friends
and/or significant disruptions because of the person’s
institutionalization. Estrangement was also sometimes due to the
person’s problematic behaviours in family interactions due to the
complex experience of mental illness. Despite this there was
evidence that some individuals, especially the women we interviewed,
were maintaining or rebuilding relationships with children and other
family members as a result of their move.
To find ourselves in the other and the other in us are in contrast with
psychiatry with its emphasis on difference
(Jenkins (1994) in Appleton, 2000)
We began our paper with a discussion of how to make sense of the
fragmented narratives of people with mental illness as they tell their
stories of institutionalization. Like Rodriquez del Barrio (2007) and
the work of Clarke, et al., (2005) we found that the stories of
psychiatric patients were rarely told in a chronological fashion and
thus the concepts of ‘space discourse’ and ‘braided time’ resonated
with our findings. Further, we assert that how people tell their
stories is, in part, a reflection of their mental distress and
potentially, the complex experiences of the many moves and disruptions
in care they have experienced.
Psychiatric deinstitutionalization in most Western industrialized
nations (Italy being the exception) is an ongoing process, continually
prompting new discussions and debates about mental health care in the
community and about how to provide care in ways that foster maximum
autonomy and recovery for people. People’s experiences of
institutionalization and their needs and desires
post-institutionalization are rarely taken into account in these
discussions. What the stories of the people we interviewed reveal,
however, is that the experience of mental health care is shaped by a
variety of factors, including the degree to which people experience
their new settings as a ‘home’ and the degree to which they are
assisted to find meaningful life activity.
In BC deinstitutionalization is taking place in the context of
severe housing shortages, especially in large urban centres. This has
created barriers for individuals ready to move into the community and
live more independently. Further, community-based supports for people
with mental illness are still under-resourced and little has been done
to augment services that provide important supports to assist people
gain access to the aspects of citizenship to which we are all entitled-
housing, income and education (Morrow, 2006, Trainor, Pomeroy &
Pape, 2004). Other Canadian studies (e.g., the Provincial Psychiatric
Hospital and Community Comprehensive Assessments Project – CAP in
Ontario) have found that while medical needs are largely being met for
people with mental illness there is a dearth of vocational, social
recreational and educational services and supports (Koegl, Durbin and
Goering, 2004). In addition, the supports that are there do not take
into account social and systemic issues like gender, culture and
ethnicity. All of this prompts us to be mindful of the fact that the
provision of mental health services is just one aspect of a continuum
of care that includes social supports and appreciates that men and
women and non-dominant ethnic groups may have differing needs.
As communities throughout BC address how best to support residents
living with mental illness, it is our hope that this paper illuminates
the diverse ways in which institutional care is experienced. We want to
emphasize that finding ways to listen to and interpret the experiences
of people with mental illness is critically important in the context of
mental health reforms and the development of new models of care. As
evidenced in the stories of the people we interviewed even the best
intentioned care cannot substitute for the recognition that loss is
integral to living with mental illness. These are losses that are
related to illness (the inability to concentrate, to differentiate at
times between reality and illusion) but perhaps more significantly
losses that accrue because of the lack of supports for people, the
absence of control over their lives and of access to meaningful
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