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TELLING A DIFFERENT STORY:
IMPLICATIONS OF CONSTRUCTIVISM FOR THE COUNSELLING
OF PARENTS OF CHILDREN LABELLED W ITH DISABILITIES
by
Jay A. Goddard
B.A., The University of British Columbia, 1984

THESIS SUBMITTED IN PARTIAL FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF
MASTER OF EDUCATION
in
' EDUCATIONAL COUNSELLING

© Jay Goddard, 1998
THE UNIVERSITY OF NORTHERN BRITISH COLUMBIA
JULY 1998
All rights reserved- This work may not be
reproduced in whole or in part, by photcopying or
other means, without the permission o f the author.

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u

APPROVAL

Name;

Jay A. Goddard

Degree:

Master o f Education

Thesis Title:

TELLING A DIFFERENT STORY: IMPLICATIONS OF
CONSTRUCTIVISM FOR THE COUNSELLING OF PARENTS
OF CHILDREN LABELLED W ITH DISABILITIES

Examining Committee:

d Lazenby
rograoL

Ch
AnthroDol

Co-superyisor: D n Ronald Lehr
Educati(4 ^ -------- ^

ith C Lapadat

Professor Annette Browne
Nursing Program

ExtemaJExaminer: Professor Sylvia Barton
Nursing Program

Date Approved:

30

m
ABSTRACT
This study explores the theoretical implications o f a deconstructed view o f disability to the
counselling and support o f children labelled with disabilities. Utilizing an open-ended focus group
research design the stories o f parents o f children with various kinds o f impairment were collected.
Parents’ narrative accounts o f raising their children with disabilities were analysed using criteria
derived from the constructivist principles o f narrative therapy with particular attention to the
concept o f deconstruction. Three groups o f parents were interviewed for a total o f 15
participants. Parents were recruited using convience and purposive sampling procedures. The
majority o f parents (n=12) were the biological parents o f children with various impairments, were
from middle income level families (n=13), and European Canadian ethnic backgrounds (n=13). All
o f the parents in the study had at least a grade 12 education and the majority (n=12) some college
o r university education.
The study hypothesized that parents’ narratives would deconstruct dominant discourses on
disability and being the parent o f a child with disabilities. It asked questions about the ways
parents deconstructed dominant discourses, whether parents’ narratives identified assumptions,
what kinds o f issues were relevant for counsellors and whether constructivist theoretical principles
are useful in the counselling o f parents o f children labelled with disabilities
Utilizing a grounded hermeutic analysis, results yielded 10 themes; horrible pictures,
parent essentializations, affective issues, deconstructions o f normal parenting, comparisons,
meeting a child needs, bureaucracy, larger discourses, labelling and diagnosis, and generalized
views o f the experience. Results are presented within four thematic categories: stories about other
people’s assumptions, stories about dealing with difference, stories about professionals and finally
stories about disability.

IV

Results provide examples o f how parents’ stories fit within a deconstructive firamework
and suggest that these parents are engaged in a process o f active deconstruction and
reconstruction o f their experiences. This process is concerned with assumptions by other people
about what their experience is “supposed to be like” as well as stereotypes about disability in
general. These results suggest specific recommendations for counsellors working with the parents
o f children with disability as well as recommendations for policy and the training and education o f
professionals working in disability-related fields.

TABLE OF CONTENTS

A pproval.................................................................................................................................................... il
ABSTRACT..............................................................................................................................................iü
TABLE OF CONTENTS ....................................................................................................................... v
List o f Tables.......................................................................................................................................... viii
Acknowledgements ................................................................................................................................ ix
CHAPTER 1
IN TRO D U CTIO N ...................................................................................................................... 1
Statement o f the P ro b lem ...........................................................................................................2
The Definition O f Disability Used in This S t u d y ..................
2
Definition o f Critical Constructivism ......................................................................... 3
Critical Definitions o f Disability and Parenting ..........................................................5
The Case for Constructivist Approaches to C oun sellin g ..........................................7
My Interest and B i a s .................................................................................................... 9
Purpose o f the S t u d y ................................................................................................................11
CHAPTER 2
REVIEW OF THE LITERATURE ....................................................................................... 13
Paradigm S h if ts ......................................................................................................................... 13
An Elaboration o f Constructivism and D econstruction........................................................19
Deconstruction in T h era p y ......................................................................................... 21
Old Stories About Parents and Children with Disabilities .................................................22
Pre 20th Century Stories About Disability................................................................ 23
M odem Stories About Parents and Disability ....................................................... 25
Postmodern Stories About Disability and P a re n ts ................................................... 27
Sad Stories - Chronic S orro w .....................................................................................30
New Stories About Parents o f Clnldren With Disabilities................................................... 33
Bigger Stories - Moving away from P a th o lo g y ....................................................... 35
Provocative Stories - It’s Okay to be Disabled ..........................................
38
Different Stories - The Case for Constructivist C ounselling.................................42
The Research Question and Hypothesis ................................................................................ 45
CHAPTER 3
METHODOLOGY ..................................................................................................................47
D e s ig n ........................................................................................................................................ 47
Participants ............................................................................................................................... 47
P rocedures..................................................................................................................................49
Use o f Deconstructive Questioning............................................................................51
Roles o f the M oderators..............................................................................................53

VI

Ethical Considerations............................................................................................................53
Data Analysis........................................................................................................................... 54
CHAPTER 4
R E S U L T S ................................................................................................................................61
Summary o f Demographic Information................................................................................. 61
Validity and Dependability o f the R e su lts.............................................................................62
Parents’ S to r ie s .......................................................................................................................64
Stories about Other Peoples Assumptions................................................................65
Horrible P ictures............................................................................................ 66
Essentializing Stories
...........................................................................70
How disability should affect life sty le.............................................. 71
Parents as advocates........................................................................... 72
Being seen as unable to c o p e ........................................................... 74
Super parents ................................................................................... 75
Stories About Dealing with D ifference.................................................................... 76
Affective Issu es.............................................................................................. 76
Revisiting chronic sorrow.................................................................. 76
Coping with feelings o f guilt and self b la m e ................................... 79
Pre-natal care and guilt.......................................................................80
Guilt and behaviour management...................................................... 82
Guilt and developmental concerns.....................................................85
H um our.............................................................................................. 87
Assessments o f “Normal” Parenting........................................................... 88
Making Comparisons ................................................................................... 89
Comparisons o f children with disabilities to normal children. . . 90
Comparisons with other children with disabilities............................93
Stories about Professionals and Services............................ : .................................. 94
Meeting the Child’s Needs ...........................................................................96
Early intervention and rehabilitation................................................ 96
School ........................................................................................... 100
Behaviour m anagem ent...................................................................103
Medical interventions........................................................................107
In defence o f professionals.............................................................. 110
B ureaucracy................................................................................................. 112
Stories about D isability.......................................................................................
114
Larger D iscourses........................................................................................ 114
Historical discourses.......................................................................114
Sociological discourse.....................................................................118
Making Sense o f Labels and D iagnosis..................................................... 119
The Big Picture - Non Pathological Views ...............................................122
Observations on What Parents Did not D eco n stru ct............................................ 125
CHAPTERS
D ISC U SSIO N ........................................................................................................................130
Analysis of the R e su lts.......................................................................................................... 130

vu
Unmasking the Dominant S to r y ........................................................................................... 139
Diflferent Stories - Deconstructing the Dominant Stories ................................................. 141
Disability ............................................................
141
Being the Parent o f a Child with D isabilities..........................................................143
Being a P a r e n t...........................................................................................................145
Contributions o f This S tu d y ..................................................................................................147
Limitations o f the S tu d y .......................................
149
Recom m endations................................................................................................................. ISO
Counselling Parents o f Children with Disabilities ................................................. 150
Professional E ducation............................
153
Future R esearch......................................................................................................................155
Conclusion.............................................................................................................................. 156
References.................................................................................................

158

Appendix A Demographic Questionnaire for Focus Group Participants....................................169
Appendix B

Summary Tables o f Demographic Data .................................................................. 170

Appendix C

Focus Group Interview Guide .........................................

172

Appendix D Copy o f Informed Consent ........................................................................................174
Appendix E

Dependability Check
. .

175

vm
List o f Tables
Table 1

Summary o f Group Participation and Recruitm ent...................................................48

Table 2

Summary o f Thematic Sorting..................................................................................... 56

Table 3

Summary o f Categories and Themes.......................................................................... 65

Table 4

Summary o f Ranking Issues....................................................................................... 135

IX

Acknowledgements
This research project could not have happened with out the assistance and support o f
several people. I would like to thank my committee members Ron Lehr, Judith Lapadat and
Annette Browne for their support, encouragement and thorough critiques o f earlier versions o f
this work. In particular, I would like to thank Ron and Judith for their co-supervision. I have
learned a lot from both o f them. In addition, I would like to thank Sylvia Barton for her
thoughtful and encouraging feedback.
I would also like to thank people who provided technical assistance; Sharon Munk for cofacilitating the groups; Susann Mongraine, Loma Ditmar, Alison Cameron, Bonnie Daudlin, Hazel
Huxley and Melody Hamblin for their assistance in recruiting participants for this study; Joyce
Goddard (thanks Mom) for her assistance with transcription; Sharon Taylor and Christian
Petersen for their assistance in editing earlier drafts (and for filling in for my teaching duties); and
Larry Johannsen and Stephanie van der Laan for completing the dependability checks. A big
thanks also goes to Margie Mills, Lisa Ryan and Micheal Coyne at the U.C.C. Library. I would
also like to thank the parents who participated in this study for sharing their experiences. I have
learned immeasureably from their stories and hope that this work can somehow play a small part
in bringing about change.
M ost importantly, I would like to acknowledge the contributions o f my partner Stephanie
and my daughter Chelsea in the completion o f this project. Because I was completing a thesis, this
has also meant that I often had some difficult balancing to do and that Stephanie did far more o f
her share o f parenting. I offer my deepest love and gratitude to Stephanie for putting up with my
many hours o f work. For Chelsea - Daddy is finally finished on the “puter.”

CHAPTER 1
INTRODUCTION
A research and professional literature on the counselling and support o f parents o f children
labelled with disabilities exists within the fields o f psychology, social work and education. This
literature defines parents’ needs for counselling and support, describes characteristics o f families
where children have disabilities, and presents helping strategies for working with parents and
families where disability is an issue.
Within the field o f disability-related studies there is also an increasing interest in examining
assumptions about the social construction o f disability. Individuals who have been assigned a
disability label, as well as their advocates, are the primary contributors to this emerging
perspective. Many o f their positions challenge long standing assumptions about the "reality" o f
having a disability. They argue that people labelled disabled have faced oppression and prejudice
in a society which has created reified notions o f normal and abnormal. Such notions are highly
evaluative and subjective, and have been internalized by people with and without disabilities.
A critical study o f the social construct o f disability, which is just beginning to be explored
within the professional literature, has implications for families and the people who help them. The
following study describes the social construct o f disability from a critical perspective and explores
its implications for the counselling and support o f parents and families o f children with
disabilities. The present study also explores the possibility that constructivist counselling theories
offer a useful framework for working with this population and can resolve some o f the theoretical
challenges presented by evolving critical discourses on disability. There are different stories being
told about being different, and increasingly, counselling with this population is seen to be about
helping parents create their own version o f a story which is positive and helpful rather than tragic

and hopeless.
Statement o f the Problem
Finkelstien’s (1993) comment that, "Those who enact helping interventions need to
recognize that the changing meaning o f disability provides a new context for the construction o f
services with disabled people on a quite diflferent, dynamic understanding o f disability” (p. 15)
guided the conception o f this study. Similarly, Ferguson and Ferguson (1995) point out the
importance o f individual stories when they state: "So let us tell our stories: recognize them as
legitimate. Listen to the stories o f others; appreciate them as additions, not as contradictions. And
most important, proclaim the value o f those whose stories so often go untold ” (p. 119). Both of
these perspectives represent contrasts to tragic stories about being the parent o f a child with
disabilities. Tragic stories are not based on a dynamic definition o f disability and come fi’om a
legacy o f the single story. Whereas individuals with disabilities have held up the experience o f
being disabled to a critical analysis, the experience o f being the parent o f a child with disabilities
has received much less critical examination.
In this study, I examine the constructed nature o f the meaning o f disability, explore the
ways in which counsellors and other professionals help families o f children with disabilities based
on particular assumptions about being disabled and about being the parent o f a disabled child, and
I explain why it is important to recognize that there are many stories about being diflferent and
being the parent o f someone who is seen to be diflferent. This study is primarily a theoretical and
exploratory work written from a constructivist theoretical perspective.
The Definition O f Disabilitv Used in This Studv
This study defines disability in broad terms and is inclusive o f physical, cognitive, sensory
and psychiatric impairments. This approach to defining disability represents a cross-disability

3
perspective (Taylor, 1996; Shapiro, 1993). While there are significant differences in experience
between individuals with different impairments, the use o f a cross-disability definition is to address
those issues which are common to all disabilities. A cross-disability definition recognizes that,
regardless o f specific functional difference, people with impairments face discrimination and are
denied accommodation within mainstream society. The definition o f disability in this study is
about particular social constructions o f difference in functional ability. Disability is a construction
that defines various differences in people’s abilities to see, hear, think, ambulate, move, feel, speak
or team.
This definition is congruent with the definition o f disability articulated by the World
Health Organization (1980) which makes the distinction between impairment (the actual condition
o f functional difference) and disability and handicap (various social impositions o f disadvantage
on people with impairments). Disability, according to this definition, is a relativistic concept which
recognizes the "interaction between societal conditions or expectations and the abilities o f the
individual" (U.N. Document, 1993 p.6). This definition contrasts traditional medical or deficit
models o f disability which see disabilities, handicaps and impairments as problems o f individual
adaptation. Lenny (1993) extends the use o f this definition by stating that disability is a problem
not o f the individual but of the disabling society.
Definition o f Critical Constructivism

Constructivism, according to Gallant (1993), represents an epistemological position based
on the central concept that “‘reality’ is constructed by the observer and is not an external entity
entirely separate from the observer” (pg. 119). Marshall (1996) and Prawatt (1996) distinguish
several versions o f constructivism in the field of psychology including cognitive and socio-cultural
approaches that stem from a variety o f sources. Olssen (1996) critiques the idea that all reality is

4
constructed, particularly as applied to the process o f knowledge acquisition. He does, however,
point to the social constructivism o f Vygotsl^ and Foucault as useful social theses in the fields o f
psychiatry and psychotherapy:
In Foucault’s sense, constructivism is achieved by historically evolved discursive
systems (e.g. psychiatry) which ‘construct’ the reality they posit in the sense that
the ontological status o f objects o f concern (e.g. states o f mind) cannot be
divorced fi’om the conceptual matrix through which they are apprehended. While
such claims constitute a strong constructivist programme, they are more relevant
as a social thesis and not as a claim about individual leaming (p. 291).
This study accepts the existence o f the underlying conditions o f functional difference or
impairment. Spinal cords, optic nerves and neural pathways are things in the real world that
sometimes function differently in different individuals. How those differences are perceived,
adapted to and socially constituted is the chief concern o f this study and is congruent with
Olssen’s description o f social constructivist theories as social theses. Traditionally, disability has
been understood from the conceptual matrix of people without disabilites. People living with
impairments do not necessarily share the ontological status (meaning) that they are disabled. This
version o f constructivism is also consistent with a humanist theoretical orientation which sees the
use o f constructivism in pragmatic terms as a tool for the promotion o f social equality (Kiel,
1995). Disability, in this sense, has been historically constructed by individuals in positions o f
privilege as a means o f validating their own “normality” and, by extension, superior status as
humans.
In the field o f counselling, narrative therapy represents a critical social constructivist
position, derived from the philosophical work o f Foucault. Narrative therapists propose that “it is

5
the meaning that (family) members attribute to events that determines their behavior” (White &
Epston, 1990, p.3). A theoretical notion underpinning narrative therapy is that meaning is shaped
by larger and often subjugating cultural discourses. (Zimmerman & Dickerson, 1996). The
concept o f a subjugating cultural discourse is derived from the work o f Foucault (1954) and refers
specifically to a set o f culturally derived values about reality and what is considered normal.
Critical Definitions o f Disabilitv and Parenting
Critical constructivist definitions o f disability emerged in the 1980s in the work o f
researchers and theorists, primarily in Britain and Europe (Chappell, 1992; Ward & Flynn, 1994;
Shakespeare, 1993). One idea proposed in these theories is that disability is a construction o f
material conditions in society. “Disability comes not from bodily impairment, but from the social
and economic restrictions imposed on the individual which disable him/her” (Chappell, 1992).
Shakespeare distinguishes American from European disability movements by the former’s concern
for “individual rights and competitive values” versus the latter’s emphasis “on changing the
system that produces disability”(p. 250).
Framing the challenge o f counselling parents o f children labelled with disabilities from a
critical constructivist perspective is both useful and relevant because this position emphasizes both
systemic and ontological issues. Furthermore, this perspective is already reflected in the stories
parents tell about their experiences in raising a child with disabilities. The meaning o f disability,
Finkelstein (1993) notes, is dynamic and multidimensional. Disability, for many, no longer equates
with tragedy, dependence and helplessness. New meanings include the notion that a disability is
socially created and impairments are only construed as disabilities within a particular social,
historical or material context (Tomlinson, 1995; Gelb & Mizokawa, 1986). The tragedy o f living
with an impairment is in society’s lack o f acceptance of individuals with certain kinds o f physical

6
or intellectual differences. Social systems which emphasize standardization and a static conception
o f normality disable individuals who do not fit within those standards or norms.
At the same time, the persistence o f subjugating cultural discourses, or what narrative
therapists term “dominant stories” (Parry & Doan, 1994), continues to have considerable
influence in the lives o f individuals with disabilities and their parents. The tragedy o f being
significantly impaired continues to be taken for granted as true. The current attention to the
conviction o f Robert Latimer for the murder of his daughter, Tracey, is a case in point. Tracey
was an 11 year old girl with cerebral palsy whose father placed her in a closed garage in a
running vehicle where she died o f carbon monoxide poisoning. Robert Latimer claimed he acted
to end his daughter’s suffering (Sobsey, 1991). Some o f the public reaction to the Latimer trial,
while mixed, has been sympathetic to Mr. Latimer and outraged at the justice system that he
received such a harsh penalty. In many people’s minds it wasn’t a murder; it was an act o f mercy.
According to the Roeher Institute (1996), “over 26,500 people signed a petition calling for a
reduction o f his sentence o f life imprisonment” (p. 112). The idea o f death as release for people
with significant physical or mental impairments is part o f a much older story, yet even in the face
of emergent conceptualizations o f disability, it continues to be told.
The Latimer case is presented as a demonstration o f the power o f particular perspectives,
rather than to argue the ethics o f euthanasia or to assert that any form o f counselling, by itself,
will prevent such occurrences in the fiiture. White (1991) refers to the pervasiveness o f the
construction o f problems around dominant subjugating discourses. They are difficult to escape
and supported by language practises (i.e., deficit models o f impairment) and institutions (i.e.,
medicine, social welfare). The social discourse on euthanasia is a deadly serious one, but it is also
embedded in the wider context o f the nature of the relationship between parents and children with

7
disabilities and whether a society values each o f its members. Some interpretations o f the Latimer
case, however, take for granted Tracey’s “deficient” physical and mental status and see his
actions as a compassionate attempt to realease Tracey from her “suffering.”
There exists a growing body o f literature by researchers who are themselves parents of
children with disabilities (Turnbull, 1988; Ferguson & Ferguson, 1995; Sobsey, 1991; 1995).
While not denying the need for and value o f counselling, these authors point repeatedly to
professionals and professional practises that rely on stereotypes o f children with disabilities and
their parents. Sobsey (1995), in a news group posting to other parents o f children with disabilities
provides an example: “Things like telling a parent that people feel sorry from them,
overemphasizing stress, etc. do not support parents’ relationships with their children” (p. 1).
From a constructivist perspective, the problem becomes one o f whose stories are being
told. Are they the parents’ own stories, or are they dominated by assumptions o f individuals in
positions o f power who have little real understanding o f what it means to be the parent o f a child
with disability and little day-to-day experience with disability? The belief that the experiences of
parents o f children with disabilities are negative has only recently been challenged (Hanline,
1991). This parallels the recent challenging o f the tragic construction o f disability. The evaluative
assumptions behind constructions o f disability have been taken for granted for many years (Soder,
1993; Hahn, 1988). Within the context o f emergent research in this area, these ideas are consistent
with Glidden’s (1993) opposition to the view “that a family with a child who has a disability is
(seen to be) a family with a disability" (p. 482).
The Case for Constructivist Approaches to Counselling
There is an ongoing struggle o f individuals with disabilities to overcome centuries o f
social oppression and exclusion, including oppression and exclusion from their own families.

8
Considering the depth o f social exclusion in the past, the more positive current social context with
respect to people with disabilities is remarkable. Like other social movements, however, it is far
from complete. The most ardent opposition at the Latimer trial was that o f various disabled selfadvocacy groups. Their singular purpose was to ensure that the Canadian courts did not justify
active euthanasia as a solution to the “problem” o f disability. Despite efrbrts to change the social
construction o f disability, people with disabilities still face questions o f the ultimate value o f their
lives.
The current study seeks to inform counsellors and other persons providing support to the
parents o f children with disabilities on emergent issues in both counselling and the field o f
disability studies. There are increasing expectations for parents o f children with disabilities to
accept their children for who they are rather than to focus on what they cannot do (Turnbull,
1988; Ferguson & Ferguson, 1995). A significant body o f work shows that individualized parent
or family-centred support, which builds on parental strengths, has beneficial effects for all family
members including children with disabilities (Dunst, Trivette & Deal, 1988; 1994; Trivette, Dunst,
Boyd & Hamby, 1995).
Lobbying efforts in both the United States and Canada by individuals with disabilities and
their families have brought about significant legislative attempts to redress the traditional
disadvantages o f people with disabilities. This includes guarantees o f access to employment and
education, suitable housing and reasonable medical expenses, as well as protection from
discrimination on the basis o f disability. In the U.S., recent amendments to the Individuals with
Disabilities Act (IDEA) pay particular attention to the support needs o f parents o f children with
disabilities. In a recent study o f parents, however, Apler, Schloss & Schloss (1995) cite an
example o f a situation where more than 50% o f parents interviewed turned to litigation to meet

9
their needs for services. This suggests that despite the efiforts o f governments, not all needs are
being met. Attention to the counselling needs o f parents is significant in this regard. Parents o f
children with disabilities must navigate a service system which is threatened by diminishing
resources and is increasingly under pressure to adapt to ideological debates within the community
o f people with disabilities. This suggests that parents o f children with disabilities need to possess
skills for self-advocacy and that they not be mired in the “problem saturated” narrative o f tragedy
and sorrow. Constructivist approaches to counselling, in particular, are seen to address both
psychological as well as sociological issues.
Mv Interest and Bias
My interest in this area o f research is rooted in my professional fi-ustration as a college
special education teacher with the barriers imposed on students with disabilities because o f
limiting pathological definitions o f what it means to have a disability. Increasingly, I have come to
see students’ desires for inclusion and empowerment as legitimate attempts to assert their rights
to personhood in a service system which seems to be designed to exclude and stigmatize them. In
the last few years, increasing numbers o f students who have been integrated in mainstream
education classes have come to the college program I teach. Their expectations and fioistrations
are often remarkably different from older students with disabilties, many o f whom remained
segregated throughout their educational careers and some o f whom have spent time in
institutions. Younger students appear to have more o f a sense o f themselves, are much less
dependent and are much less tolerant o f being excluded and devalued. There has been a shift in
consciousness and self-definiton.
I also increasingly encounter parents o f young adults labelled with disabilities who are less
stigmatized about their child being labelled with disabilities and more ready to help their children

10
to achieve specific goals. While I deal with some firustrating exceptions to these cases, I have
developed the view that there is a new generation o f parents who are better informed and more
accepting o f their children’s differences. These parents appear to have reconstructed a reality in
relation to their child’s impairments which is based on a different view o f themselves and o f
disability. To be sure, they are more demanding o f professionals and social institutions, but I have
found it makes communication much easier and ultimately creates a much better educational
context than when parents present stories o f stigma and denial. Their children seem to do better
and present many fewer secondary issues.
At the same time, I continue to be frustrated by parents who view impairment negatively
and either have few expectations o f their children or expect me to fix their children’s problems. In
such cases, the student’s acceptance o f his or her own differences is often greater than the
parents’. Problems arise because children cannot meet the expectation that they can be made
normal. In other instances, parents denigrate the possibility that their children can be economically
productive and put severe limits on a child’s independence. Because o f issues o f confidentiality, I
cannot describe specific instances. When I do encounter these views, however, there is often
considerable conflict and it seems that neither parents nor children benefit.
I mention these instances as a way o f elaborating my own bias as a researcher. I do not
wish to blame or denigrate “bad” parents. Parents are doing what they believe is best for their
children and are coping with their own issues as best they can. I see their actions as derived from
a discourse on disability which is based on the stigma and tragedy o f disability. Other parents, as
mentioned earlier, have different stories based on different and sometimes more empowering
interpretations o f disability and impairment. This is not a study about good parents and bad
parents; it is, rather, a study about different kinds o f stories. My goal is to suggest that by

11
understanding positive and unique outcomes, counsellors will devise counselling strategies that
foster enhanced self esteem for both individuals with disabilities and their parents.
Purpose o f the Study
Past counselling and support practices can be said to contribute to the “problem saturated
narrative” about parenting and disability (Beresford, 1994). A theoretical redefinition o f
counselling for parents is needed. Counselling ought to empower parents based on the dialogue
that they articulate, rather than reflecting the assumptions o f practitioners about what they
imagine it is like to have a child with disabilities. This perspective also needs to include attention
to unexamined assumptions about disability in general. I hope to demonstrate that constructivist
counselling practise provides a useful theoretical framework for working with the parents o f
children with disabilities. To paraphrase a well known saying from constructivist counselling
practise: the problem is not the problem but what you are doing about it is the problem
(Watzlawick, Weakland & Fisch, 1974). What counsellors have been doing about the problem for
many years is sympathetic but also possibly patronizing and stigmatizing. What they may need to
be doing is to help clients re-contextualize problems and to make sense of the way problems are
“constructed” around issues o f disability.
The current study frames the counselling o f parents o f children with disabilities within a
constructivist theoretical framework as defined by the narrative therapy approach. My purposes
are two-fold. First, I will examine the narratives of parents o f children with disabilities using their
own voices in order to deconstruct notions about disability and being the parent o f a child labelled
with disabilities as told in their own voices. Secondly, I will explore the theoretical concept o f
deconstruction, as defined within narrative therapy with parents o f children labelled with
disabilities. If it is the case that parents o f children with disabilities have been stereotyped and that

12
issues have been reduced to an “essentialized” set o f common factors which do not reflect the
individuality o f parents nor the wide variety o f possibilities in adjusting to issues o f disability
within a family, then it is important to deconstruct existing theories about parental response and
adaptation in order to establish new approaches to counselling that acknowledge diversity.

13

CHAPTER 2
REVIEW OF THE LITERATURE
The following review o f the literature summarizes previous research and theory on
disability and counselling. In addition, it elaborates historical and contextual issues and uses a
deconstructive analysis to locate contradictions and theoretical problems. In the review, I begin
with a discussion o f the paradigm shift from modernist to postmodern epistemology and provide a
further elaboration o f constructivist counselling and the concept of deconstruction. I proceed to
frame the issue o f parent counselling as a set o f stories. Using the language o f narrative therapy,
these stories include: “old stories” about parents and disability with particular attention to the idea
o f “chronic sorrow," new and bigger stories about the counselling needs o f parents, and
provocative stories from the perspective o f people with disabilities about parents. A hypothesis is
offered based on key concepts from this review.
Paradigm Shifts
There are contradictions in the existing literature on the counselling and support o f parents
o f children with disabilities with regard to attempts to reduce the issues o f parenting a child with a
disability to a set of measurable constructs (Glidden, 1993; Hornby, 1994). Historically, there are
also a number o f assumptions which affect how this diverse and changing population has been
studied, what kinds o f results are presented as legitimate knowledge and how practitioners are
educated to help parents deal with issues o f having a child with disabilities. When Sobsey (1995)
refers to sympathy and an over-emphasis on stress, he is also referring to a body o f work which
has informed the training o f professionals and which is based on assumptions about parental
adaptation to disability and about disability itself. Many o f these assumptions are negative - they

14
tell sad stories - and have only very recently begun to be countered by stories which are more
hopeful, more empowering and more positive (Lenny, 1993; Turnbull, 1988).
The paradigm shift in the social construction o f disability reflects a shift o f perspective in
the wider discourse about human diversity. Parry and Doan (1994) describe this as the shift from
a modernist to a postmodern context o f inquiry. The modernist context is informed by the
certainty o f science and based on the notion that reality is knowable in a singular form. In
contrast, the authors describe the postmodern context as “a growing realization that no single
story sums up the meaning o f life...that no story or theory is sufficient to correspond fully to its
subject matter" (p. 10). There is an epistemological shift from the certainty o f knowing the way
the world works to the uncertainty o f a position which states there are many ways o f knowing the
world and all o f them are the best attempts to construct reality based on one’s experience in the
world. One explanation for the difficulty science has had in identifying simple causal relationships
is that multiple variables mutually interact within naturalistic contexts. For example, in her review
o f empirical research in the area o f coping resources in families where children have disabilities,
Glidden (1993) points out that because many variables are inter-correlated, researchers have failed
to find relationships between the same variables in replication studies. While some researchers
would contend that this points to the need for more rigorous science, researchers working within
the postmodern context o f enquiry point to something different.
From a postmodern perspective, science is a way of telling stories about the world that is
very useful for the development o f technologies but not always as useful for describing the
complex interactions o f human beings. According to this position, no matter how precise the
instrument o f measurement or carefully controlled the study, social scientists are necessarily
influenced by their own assumptions and values. There are contradictions presented by exceptions

15
to the rule. Often the dynamic and temporal aspects o f the social and historical context in which
data are gathered prove most troublesome o f all. This context changes over time - what might be
a reflection o f social reality today will be seen differently ten or twenty years from now (Ary,
Jacobs & Razavieh, 1990).
Consider, for example, that at one time homosexuality was thought by a significant portion
o f the scientific community to be pathological and was included in the Diagnostic and Statistical
Manual o f Mental Disorders (DSM). It has since been removed and is no longer considered
pathological nor deviant, but is instead seen more as a reflection o f the natural range o f human
sexual experience (Coles, 1982). In the intervening time, between its inclusion and its removal, the
social context changed. The gay rights movement contributed to and changed the way in which
homosexuality was conceptualized. Sexuality, as a subject o f academic study and scientific
research, has also changed. It is questionable today, for instance, to conduct research which seeks
a “cure” for homosexuality. The concept o f “cure” is criticized for impliying pathology when no
pathology indeed exists. With the exception o f some conservative religious positions, same-sex
variations in human sexuality are no longer considered deviant. This example is somewhat over­
simplified, but demonstrates how socially constructed phenomena change over time and with
respect to the inclusion o f the views o f those who have been labelled deviant.
Constructivists refer to the process by which accepted truths are challenged and redefined
as "deconstruction." Deconstruction is an attempt to identify contradictions and taken-for-granted
assumptions about accepted versions o f reality (White, 1991). The gay rights movement has
deconstructed homosexuality. Feminist critique can be viewed as a deconstruction o f traditional
views on gender difference. The Civil Rights movement has deconstructed the social construction
o f race. Similarly, the disabled rights movement deconstructs the idea o f disability.

16
Deconstruction, as a theoretical method o f inquiry, involves challenging w hat are seen as
scientific rationalizations o f cultural values. An example o f this is the re-examination o f the origins
and assumptions underlying intelligence quotient (IQ) testing. At the beginning o f the century,
particularly in North America, IQ testing was a culturally biassed and deliberate attempt to
separate “inferior” and “superior” classifications o f people based on their race, gender and class
(Gould, 1981; Radford, 1994). Gelb (1995) points out that what constituted low intelligence went
even Anther than this and included things like a strong preference for the color purple and
whether or not an individual engaged in masturbation. According to Rioux (1994), early research
into the testing o f intelligence was presented as sophisticated science when, in essence, it was the
mathematical manipulation o f test scores designed to validate existing ethnic, racial and class
divisions as legitmate and biologically determined. North American society, at the time, was
deeply divided ethnically and racially, and with regard to social class and gender. Those in
positions o f power and privilege (White Anglo-Saxon men) maintained a certain cultural aesthetic
which valued progress, orderly behavior and a well defined hierarchy. Testing IQ was a means o f
maintaining the status quo.
Some o f the intelligence tests developed by early psychologists are still in use today with
little alteration o f their original forms. The same theoretical principles which underpinned the
development o f IQ tests also persist. Gould (1981) points out that the science o f psychometrics is
trying to measure a multidimensional construct, impacted by numerous complex variables which

may never be entirely understood. He also points out that intelligence is not a "thing." This set o f
constructs purported to measure intelligence, in fact, is really merely a score on a test, taken
under particular conditions and based on culturally derived assumptions about what is correct or
incorrect. Despite this criticism, millions o f people who score below an arbitrary point come to be

17
defined by another social construction called mental retardation. It is an easy solution and masks
important questions about why people who do not do well on such tests are not accepted by the
larger society. In addition, the score creates a totalizing social role. I had a former client whose
appraisal o f being labelled mentally handicapped was summed up succinctly when he said, “We
are the stupid people, la la la."
The constructivist orientation in this study questions the limits o f positivist epistemology
in relation to disability. The intent o f this study is not, however, to dismiss or denigrate
quantitative inquiry. I review both quantitative and qualitative studies o f parent counselling; both
traditions o f research present useful information for elaborating an understanding o f the research
problem. In addition, I also define issues o f historical and cultural context and locate
contradictions to elaborate ontological (meaning-related) issues central to the recent discourse o f
disabled activists and critical researchers in the field o f disability studies.
As an example o f a contradiction in studies on the counselling needs o f parents o f children
with disabilities, consider the following two examples o f studies published the same year.
Because the belief that all parents progress through the same predetermined stages
as they adapt to having a child with disabilities is now questioned, the individuality
o f all family members must be recognized and respected. Each parent responds in
his or her unique way to having a child with a disability, and those responses must
be recognized as positive...and must be respected as a reaction unique to a
particular parent (not as part o f a stereotypic process o f adaptation) (Hanline,
1991, p. 56).
Hanline’s position reflects the concerns in the present study. The following quote is informed by a
different set o f assumptions which are noticeably contradictory.

18
It has been widely recognized that parents, after learning o f a child's disability or
serious illness, experience a pattern o f feelings and responding similar to that
exhibited by other parents in that situation. Using the knowledge o f stages and
typical reactions, the well trained counsellor can often provide valuable support to
the family during this crisis situation" (Ziolko, 1991 p. 33).
The contrast between these quotes helps to define the research problem this study seeks to
address. Hanline emphasizes the individuality o f parents, whereas Ziolko suggests a common
pattern. Hanline speaks o f unique reactions and positive responses, while Ziolko refers to a crisis
situation. Hanline suggests that counsellors take an open-minded stance free o f judgment, while
Ziolko stresses the importance o f counsellor competence and the need for specialized knowledge
o f stage theories. What is important to note here is that there are different sets o f underlying
assumptions in these two positions. Ziolko implicitly implies a certain mystique around the
practise of counselling parents o f children with disabilities in asserting in the same article that
counsellors need to approach the task with “awe and caution” (p. 31).
It would be simplistic and misleading to say which position is correct. Ziolko’s position is
grounded in the fact that, for many parents, having a child with disabilities is indeed a troubling
and difficult experience. H er position is problematic because it doesn’t account for variations
informed by different sets o f assumptions about disability and parenting. Hanline, while attempting
to address this issue o f individuality o f parents, perhaps does not stress that sometimes those
reactions are very negative, leading to abusive and dysfunctional situations. Robert Latimer’s
response to his disabled child, from the perspective of people living with disabilities, could hardly
be called positive.
These examples provide two different versions o f the reality o f parents and children with

19
disabilities. There are others which are explored later in this review. From a postmodern
perspective, there is no longer just one way to view the issue o f counselling parents o f children
labelled with disabilities. Before proceeding to a description o f these varied realities, the principles
o f constructivism and deconstruction are further elaborated.
An Elaboration o f Constructivism and Deconstruction
s
I

Within the social sciences, constructivism is a theoretical and philosophical principle

I
I

derived from the central tenet that "reality" is constructed rather than being an objective and

I

knowable "truth." Constructivists maintain that in the process o f trying to understand the world,

I
I

particularly the multidimensional nature o f human social interaction, it is impossible to separate
the observation o f phenomena from the observer. In other words, the way the social scientist

3
constructs the world and the meaning that he or she attaches to events, inevitably affects the

I

outcome o f those observations as well as what he or she selects to attend to in the first place

I

(Becvar & Becvar, 1993). Constructivists emphasize the importance o f paying attention to

I

I
i

historical, ideological, sociological and cultural context in the production o f knowledge. They

?

critique what is presented as factual information about the world. Skrtic (1995) described
constructivism as a criticism o f the “functionalist paradigm” where there is an assumption o f a
“single social reality to which humans react mechanistically” and in which “ the current
arrangement o f society is assumed to be functional and thus indispensable, if not inherently
correct” (p.67).

Positivism maintains that reality is ultimately knowable given enough weight o f evidence
and the continual refinement o f tools for measuring real phenomena. While constructivism
contrasts with positivism, it is an oversimplification to state these two viewpoints are diametrically
opposed. Modem positivist research is increasingly called upon to present the limits o f its inquiry;

20
to emphasize that logico-empirical evidence is, at best, a guess.This is particularly so within the
social sciences, where there are simply too many variables for any study to be conclusive.
Constructivist inquiry, conversely, is seen to create an uncertain and ambiguous view o f reality.
Critics o f constructivism point out that widely shared meaning is indeed a reality, and that without
it a great deal o f important human activity would be impossible (Olssen, 1995).
In the field o f counselling, constructivism relates to both studies o f helping strategies as
well as to the practise o f counselling itself. Constructivist researchers in counselling question
theories o f helping which reduce processes o f healing and personal growth to a set o f patterns or
models. This questioning does not involve a rejection o f traditional approaches to psychotherapy,
but points to the need to put all models in perspective and to recognize them as a particular way
o f constructing the counselling process. Constructivist counselling theorists contend that various
helping processes need to be seen in relation to their historical and cultural context and to include
attention to the particular background o f both the client and the counsellor, the setting in which
counselling takes place and the wider social and cultural issues which play a part in the problems
clients present. According to Peavy (1993), “It cannot be assumed that professional skill and
knowledge fit every client case, nor can it be assumed that there is one right solution to each
problem” (p. 32).
Modernist approaches to psychotherapy, in contrast, posit the human psyche as existing as
a discrete entity with measurable parameters. Psychoanalytical and behaviourist traditions, in
particular, create conditions or categories o f pathology or dysfunction which can be treated by an
expert trained in specific therapeutic techniques (Corey, 1991).
In contrast to modernist approaches, narrative therapy (White & Epston, 1990; Parry &
Doan 1994; Zimmerman & Dickerson, 1996) represents one approach to constructivist

21
counselling. Narrative therapists define counselling as a process o f discussion or conversation
where the important metaphor is not the scientific model o f the pathological individual in need o f
treatment but is a model o f the influence o f a problem narrative in the lives o f those experiencing
it. In psychodynamic theories, the problem is seen to be within the person and remains there
throughout the course o f therapy. The disease metaphor suggests problems can be removed,
treated and adjusted, or, in psycho-analytical terms, that the psyche (ego, id and superego) can be
reintegrated. In narrative therapy problems, are conceptualized as entities unto themselves, in a
process White (1991) terms the “extemalization” o f the problem (p. 39). White speaks about the
life o f the problem or the influence o f the problem rather than having problems or treating
individuals for their problems. The metaphors o f narrative therapy are literary rather than medical.
Narrative therapists listen to people’s stories and assist them in re-authoring their lives.
Zimmerman and Dickerson (1996) describe narrative therapy as a way o f talking about problems,
or an attitude about the helping process, rather than as strictly a set o f cognitive techniques.
Deconstruction in Therapy
The counselling of parents where children have disabilities is a counselling problem
relevant to constructivist theory and narrative therapy. Disability, although characterized by
specific functional differences or limitations, also represents a narrative about living with
difference. This different way o f conceptualizing the issue o f disability and its relationship to
parents contrasts with a view o f disability as a “bad thing” that no rational parent would want.
Certain narratives speak of mourning the loss o f the ideal child, a burden to bear, or a tragic and
unfortunate situation (Olshanksy, 1962; Ziolko, 1991). While narrative therapy does not discount
those experiences, it tries to locate them as one story among many, including those stories where
disability is not or has ceased to be a problem.

J

One o f the ways in which parents move from one story to another is through the process

II o f deconstruction. White (1991) describes deconstruction as an attempt to uncover "procedures
i

I that subvert taken for granted realities and practises: those so-called truths that are split off from

1i the conditions and the context o f their production; those disembodied ways o f speaking that hide
I their biases and prejudices; and those familiar practises o f self and relationship that are subjugating
I o f people's lives” (p. 34). In other words, deconstruction, as employed in therapy, identifies and
I foregrounds those parts o f people’s stories which might be creating contradiction for them

1 because they make decisions based on a story about the way they are supposed to act under

I

â certain conditions. Assumptions are challenged and clients come to see they have power over their
J problems and that they are able to vocalize and eventually to conceptualize a difrerent
j (reconstructed) narrative theme. Deconstruction o f problems can take many forms and can be
j applied to many types o f problems. For example. Hart (1995) reviews numerous applications o f
I White’s ideas to specific problems, including case studies o f families where children have been
■I labelled with some form o f disability.

I

Narratives about disability and about being the parent o f a child with disabilities have

I historical dimensions. A number o f stories have been told throughout human history about the

1

] way in which people with impairments and their parents are supposed to live. The next section of
i the literature review provides an overview o f these “old stories,” with attention to the historical

!

j evolution of subjugating discourses about being the parent o f a child with disabilities.
I

I

I

Old Stories About Parents and Children with Disabilities
A full analysis o f the history o f being the parent o f a child with disabilities is beyond the

i

I scope o f the current study. The following section briefly describes concepts from a number o f

1I historical
.
.
.
.
analyses which review the western historical construction o f disability. The section is

23
organized according to Stockholder’s (1994) historical taxonomy o f disability, encompassing the
following periods: “the archaic or classical; the medieval; the Enlightenment and; the modem”
(p. 161). The purpose o f this section is to trace the historical roots o f taken for granted realities
and cultural practises as they relate to issues o f being the parent o f a child with disabilities.
Pre 20th Century Stories About Disability
During the classical period, people with disabilities were seen to be “outside the realm o f
freedom” (Stockholder, 1994 p. 162). These notions reflected Plato’s (n.d.) conception o f human
value (gold, silver and brass or iron). Women, craftsmen and slaves, and the practical and bodily
tasks they performed, were seen to be inferior to or less virtuous than the intellectual and political
pursuits o f free men. Under this broad conception o f society, people with visible impairments
were considered non-human and an affront to civilized sensibilities. Infants with visible
deformities were left to die at birth. Other individuals with impairments were employed to
entertain as oddities and freaks.
Many individuals who would be seen to be intellectually disabled by today’s standards
would not have been seen as disabled in earlier times since the need for widespread literacy was
not as great (Nibert, 1995). Similarly, the conceptualizations o f “defect” probably did not include
certain conditions o f impairment which only exist today as the result o f medical interventions. It is
assumed therefore, that the population o f people with disabilities represented a somewhat
different set o f impairments than is known today. These conditions remained a feature o f society
up to the time o f the industrial revolution (Nibert, 1995).
Stockholder (1994) described the medieval period as a period when there was a dual
mythological view o f physical and mental impairment - the sacred and profane. Impaired
individuals, during this period, provided a justification o f Christian charity. People who cared for

I
i the sick, the simple-minded and the injured were doing God’s work. At the same time, individuals
! with certain types o f disabilities (people with epilepsy or mental illnesses) were associated with
: demonic possession and evil. Another kind o f duality existed in medieval conceptions o f the fool
! who was simple, yet had a special wisdom (e.g., the fool in King Lear). Nibert (1995) speculates
that the court jesters or fools attached to royal courts and wealthy households would today be
considered intellectually impaired (Nibert, 1995).
The Enlightenment period shifted emphasis on the definition o f impairment fi'om
mythological to rational or materialist conceptions. The growing interest in science brought with
it a schema for classifying various forms o f impairment (Stockholder, 1994). Enlightenment
thinking also suggested the first formal attempts to both segregate and rehabilitate individuals
considered abnormal (Roeher Institute, 1996). Economically, as people were thrown off
agricultural land and labour shifted to the factory economy, people with disabilities who had been
cared for or employed at home or in monasteries had no place in mainstream society (Nibert,
1995). Institutional placement o f ‘defective” children was both a solution to issues o f surplus
population and an attempt to provide “cures” so that individuals with certain disabilities could be
reintegrated into the emergent capitalist society (Rioux, 1994).
Toward the end o f the nineteenth century, it became apparent to the scientific and
academic community that “cures” for certain kinds o f impairments were not forthcoming. In place
o f early rehabilitative conceptualizations o f impairment. Social Darwinism came to the fore.
Briefly, Social Darwinist theories misrepresented biological ideas about the survival o f the fittest
as a justification for, among other things, the subjugation o f people with disabilities. People with
impairments were seen to be socially inferior because they were biologically inferior. Such
thinking grew into the notion that they represented a menace to social progress which continued

25

I

'I to influence conceptualizations o f people vnth disabilities well into the modem period (Roeher

II Institute, 1996).
II Modem Stories About Parents and Disability
à

At the tum o f the century, the practise o f segregating people labelled with disabilities in

I large institutions was well established (Nibert, 1995). Institutional segregation was tied to the
3

I

I notion that individuals with significant physical, emotional or apparent intellectual impairment had
I little economic value in an industrial society which stressed conformity and standardization. This
separation can also be linked to aesthetic ideals which favoured attractive, able-bodied, and
I apparently intelligent individuals. Hahn (1988) points out that, even today, “aesthetic anxiety”

I

I continues to play a significant part in the discrimination against individuals with disabilities. In the

I

I early part of this century, however, the rejection o f individuals with disabilities was seldom
}

I questioned as discriminatory. The scientific community rationalized this social denigration and

I

separation as the inevitable outcome o f both biological and social evolution. Eugenic and

I] degenerationist theories, according to several authors (Gelb, 1995; Nibert, 1995; Gould, 1981),
I
j were based on hierarchical notions of human inferiority and superiority, as well as the tacit racist

i
j and moralistic belief that science should play a role in perfecting the human species. Such

I thinking led to the institutionalization o f individuals with various disabilities, as well as their
I sterilization without consent. In Nazi Germany, it led to medical experimentation and active
I euthanasia (Wolfensberger, 1981).
I

Parents faced with the birth or diagnosis o f a child with an impairment had few choices

: within this kind o f social context. There was a stigma attached to siring or giving birth to a
“defective” child and probably, given the pervasiveness o f eugenic thinking (“bad blood”), a great
deal of self-recrimination and guilt. Counselling often took the form o f helping parents make

I

26

i decisions about institutionalization and later on helping them to “forget” about the child or
j reassuring them that they had made the right choice. This meant emphasizing that their child was

1
] better off in the care o f trained professionals or with “their own kind.” In the extreme, some

I scientists openly advocated euthanasia for individuals with severe disabilities and counselling for
I
^ parents to “relieve them o f their guilt” (Kennedy, 1942).
;

In reviewing early 20th century history on helping the parents o f children with disabilities,

!
I it is evident that being the parent o f a child considered “defective” is considered by some
I professionals as a kind o f pathology in and o f itself. Given an unquestioned acceptance o f the
connotation o f disability as tragic, and related to death, disease and inferior genetics, it is not
difficult to see why. These associations, and the language which support them, predate the early
20th century and remain the foundation o f many core beliefs in our society.
Woodill (1994) describes seven popular metaphors as well as seven professional
metaphors for disabled people which detail these various beliefs. Popular metaphors include
disability as: misfortune, sickness, divine plan, punishment, threat, pet or entertainment and
disabled person as other. Historically, popular metaphors are related respectively to: giving to
charity, medical care, misfortune, sin, monsters, freak or horror shows and strangers. Woodill
describes the representation o f disability in professional discourses according to the following
historically derived metaphors (derivations in parentheses): disability as a violation o f norms
(statistics), a deficit (compulsory education), misfortune (feeding those in need), a sign o f sickness
(tracking animals), an object o f study (physics), a breakdown o f functioning (assembly line
production) and a technical problem (engineering).
Until recently, these beliefs about the nature o f disability were seldom challenged. Many o f
them remain the dominant principles within particular professional and popular discourses today.

27
Specialized services continue to require IQ tests or other quantifying forms o f evaluation. Medical
research continues to look for the cause and “cure” o f certain impairments. Employment issues
are addressed through a focus on technical devices as the dominant way o f accommodating
physical impairments. Popularly, activities such as dw arf tossing continue to reinforce the
metaphors that people with disabilities have value as entertainment. There are still telethons and
charitable events designed to help “those less fortunate” which emphasize sympathetic views of
people with impairments. People with disabilities are disproportionately poor (American
Association o f Disabled Persons, 1992; Barton, 1993) and are more likely to be the victims o f
physical and sexual abuse (Murphy and Corte, 1987; Sobsey and Vamnhagen, 1994). In the next
section o f the review, I discuss challenges to traditional disability conceptions, as well as the
emergence o f the new metaphor o f disability as a struggle for human rights.
Postmodern Stories About Disabilitv and Parents
Following the Second World War, and perhaps because o f it, thinking about the social
world changed profoundly. The atrocities o f the Nazi concentration camps and the atomic bombs
dropped on Hiroshima and Nagasaki led many to question the notion that the dominant political
and economic establishments were truly working in the interests o f the larger society. Similarly,
because it appeared to play such a key role in those events, the belief that science was benign and
value free was seriously challenged (Parry & Doan, 1994).
Within this historical context, the awareness o f the extremes to which eugenic thinking
could be taken underscored a growing belief in the humane treatment and valuing o f individuals
with disabilities. The Nazis had tried to rid the world o f Jewish people but they began their
"eugenic experiment” by systematically exterminating people with disabilities (Wolfensberger,
1981). Early advocates o f deinstitutionalisation and normalization often used the example o f

28
Hitler’s Germany to support their theories (Niije, 1981; Wolfensberger, 1972). The post-war

I period was also a time for increased concern about the rights o f marginalised and devalued
j

I groups within society. The language o f the women’s movement and the civil rights movement
I suggested a strong need to re-evaluate a world dominated by ‘Svhite men with money” and an
• adherence to hierarchical values.
;

Within the post-war social context, one o f the most influential theories in regard to people

i

I with disabilities, was that o f normalization. Principles o f normalization emerged in Scandinavia
i

I with Niije (1970) and later in North America with Wolfensberger (1972). The new principles
j

^ were guided by an ideology that saw institutionalization as dehumanizing and unjust.
Theoretically, normalization has much earlier roots in the rehabilitation movement. Normalization
involved giving individuals with disabilities the patterns o f a “normal” life (including a family or
home life). It was strongly based on the notion that human dignity stemmed from being included
and valued, and that being valued meant being seen as an active member o f the community.
The emergence o f normalization as a guiding principle in human services had a huge
impact on the parents o f children with disabilities. By itself, normalization had relatively little to
do with counselling parents short o f trying to get parents to examine the possibility o f parenting
their own children Normalization suggested strategies for assisting individuals with disabilities in
their day-to-day lives, growth and development. In practical terms, the implementaion o f the
principle of normalization brought into question the value o f the automatic institutionalization or
segregation of individuals with disabilities. This meant that parents, for the first time in many
years, were supported in their decision to keep a child with disabilities at home. The concept o f
normalization was not a constructivist or postmodern theory (Wolfensberger, 1995). It did
however, set the stage for a very different kind o f context in the lives o f individuals with

I

I;| disabilities and their families.
I

29

Current critical thinking about disability challenges the theory o f normalization as taking

II for granted a set o f assumptions about the value o f normal patterns o f life (Chappell, 1992).
I Others have commented that government promotion o f normalization and inclusion has less to do
4 with justice and more to do with saving money on expensive institutions and specialized services

I
(Roeher Institute, 1996). It is difficult to argue, however, that it did not open the door to the
II emergence o f more critical theories because it brought to light centuries o f oppression o f people
I labelled with disabilities. It also meant that people with disabilities became visible participants in
I

their communities. Concurrently, many people with physical and sensory impairments have
developed their own versions o f alternate constructions o f disability. Shapiro (1993) cites the

■1

; protests o f the “Rolling Quads” and the “Gallaudet Uprising” as pivotal events in disabled political
i activism. These reflected, respectively, the experience o f people with physical disabilities and

I people who are deaf.
The International Year o f the Disabled in 1981 saw the culmination o f this social change
and began a decade in which definitions o f disability and the services provided for people with
disabilities would undergo radical alterations. Much o f this change was fostered by individuals
who had impairments. It was also the result o f the actions o f parents o f children with disabilities
(Singer & Powers, 1993). Although the politically active disabled community represents only a
portion of the total population o f people who are considered disabled, they have nonetheless
become influential in public policy, research agendas and in the creation o f services designed with
their input. While the struggle for the recognition and the empowerment o f disabled individuals is
far from over, these ideas signify a radically different social context than existed prior to World
War Two.

I

30

I

The remainder o f the review o f the literature looks more specifically at issues related to

i parents and parent counselling in light o f this emergent context. The first example o f literature on
i the counselling o f parents, Olshansl^’s (1962) concept o f chronic sorrow, is presented as a

I

I seminal theory in the development o f approaches to the counselling o f parents o f children with
i disabilities. It is one o f the first attempts, within professional literature, at defining their

I counselling needs. It is a modernist theory, rooted in taken-for-granted pathological assumptions
J about disability and being the parent o f a child with disabilities.

j

I Sad Stories - Chronic Sorrow
j

One o f the first attempts to define the counselling needs o f parents o f children with

■j

i disabilities was Olshansky's (1962) idea o f chronic sorrow. Olshansky stressed the need for

j parents o f children with severe disabilities to be able to vent feelings o f sadness in order to
i “muster and maintain the stamina needed to live with the tragedy o f having a mentally defective

j child” (p. 192). He further cautioned the helping professional that the ultimate goal o f counselling
i

I was not to foster acceptance o f the child but rather to cope with frustration and stresses
associated with a childs impairments.
From a critical perspective on disability, chronic sorrow can be deconstructed.
Olshansky’s (1962) ideas were based on the assumption o f the presence o f “defect” as having a
universally felt psychological effect on parents. He described chronic sorrow as a “natural”
reaction tied to “symbolic meaning on an unconscious level” (p. 191). The term ‘defect’ was a
taken for granted assumption about what was normal. The connotation o f that defect was tragic,
and sorrow was seen to be a universally programmed emotional response in all humans. The
conceptualization o f chronic sorrow offered no discussion o f the material or socio-political
contexts in which these notions were embedded. The dominant social values o f the time were

31

I

i| taken for granted as true.
•|
I
In contrast to the assumptions o f chronic sorrow, the following passage produced for
j new parents o f infants diagnosed with Down Syndrome (DS) represents a contrary set o f

I
I assumptions about disability.
I

If you are welcoming a new baby with Down Syndrome into your family, you

'
Ii
I

probably have many questions and concerns as do your extended family, friends
and neighbours... Allow your family, friends and neighbours some time to learn

i

I

about Down Syndrome reminding them if necessary that DS is just a small part o f
who your child is and will become... You are allowed to feel however you feel and
so are others who love you and your baby... take time to welcome and enjoy your
baby. They grow up fast. (Wilson, 1996 p. 7)
This is not a tragic construction o f disability, nor does it reduce the affective response o f parents
to a single emotion. Parents are " allowed to feel however they feel.” The passage also suggests
acceptance is both appropriate and desirable. It is significant that it is written by other parents and
not an expert. In this respect, the information represents a different narrative about disability and
parenting which fits within the framework o f postmodern thinking.
It would have been difficult to imagine, in 1962, the idea that Down syndrome (or any
other impairment) could be seen as “a small part o f who your child will become,” or that parents
should welcome and enjoy their baby. Olshanslqr's (1962) theories and those o f other grief stage
proponents were, according to Bernier (1988), informed largely by psychoanalytic theory,
specifically the idea that the birth o f an abnormal baby was an assault to the ego creating a conflict
with libidinal attachments. Zimmerman and Dickerson (1996) described psychoanalysis as
modernist theory concerned with describing “exactly how things work” ( p. 15). The notion that

!

I psychology could describe exactly how things work for the parents o f children with disabilities is

I implicit in the work o f Olshansky.

I

The concept of chronic sorrow continues to inform researchers in the subject area,

I
I suggesting it cannot be dismissed as a historical artifact. In a study o f the counselling needs o f

I

I parents o f handicapped children, Kratochival and Devereaux (1988) found that, even what they
i

I termed “well adjusted” parents, continued to experience feelings o f grief and the need to seek out
counselling. In reviewing literature, I found a number o f articles which continued to cite chronic
sorrow as a relatively unquestioned conceptualization o f the experience o f parents o f children

I with disabilities (George, 1988; Homby & Seligman,1991; Bernier, 1988). Within current

I. theoretical literature, there are, however, more attempts to contextualize the concept o f chronic
sorrow. Oliver (1993) described what he termed the “fetishism for normality” as underlying the
problems faced by parents in coming to terms with having a child with disabilities. From a
I constructivist position, the concept o f chronic sorrow can be viewed as a particular discourse

I about being the parent o f a child labelled with disabilities. It is not the only discourse, but it is
reflective o f dominant social values.
As another example o f taken for granted assumptions, Glidden (1993), in a review o f
empirical studies, asked the question; “what parent ....would not wish for that disability to
disappear and the child to have a “normal” life” (p.485)? In a recent conversation via a news
group for parents of children with disabilities, I received a correspondence from a mother o f a
child with disabilities who stated “ I would not want my son to magically have his disability
disappear, because he would no longer be who he is. I would have a different child and I love the
one I have.” This may be a rare individual but it does answer Glidden's rhetorical question by
showing that there is at least one parent who would not want her child’s disability to disappear.

33
There are indeed many different stories about being the parent o f a child with disabilities, and not
all o f them are about grieving and sadness.
Narrative therapists working from a constructivist theoretical orientation are concerned
with what are termed “subjugating cultural discourses” (Zimmerman & Dickerson, 1996).
Another description o f this is stories derived by those in power to describe what is normal and
not. Olshansky describes chronic sorrow as normal. Glidden suggests parents’ longing for a
normal child as normal. If these assertions are seen as absolute, then neither the parents o f
children with Down Syndrome, nor the mother o f the child in the news group, are, in effect
normal.
In summary, the concept o f chronic sorrow was a seminal work in the area o f counselling
parents o f children with disabilities. Important historically, this perspective recognized that
parents of children with disabilities might benefit from some form o f emotional support, rather
than accepting the shame, concealment and abandonment characteristic o f earlier views o f
disability. While the experience o f chronic sorrow continues to resonate for many parents o f
children with disabilities, the construct o f chronic sorrow is best understood in its historical and
cultural context. Clearly, it is not the only story about being the parent o f a child with disability,
and from a constructivist perspective, it can be seen as a subjugating discourse.
New Stories About Parents o f Children With Disabilities
Early attempts to define the counselling needs o f parents o f children with disabilities, like
chronic sorrow, work from the modernist assumption o f the single story. The single story tends to
be sad and focuses on deficits. It takes for granted that parents’ response to the birth or diagnosis
o f a child with disabilities is negative. From a constructivist perspective, the single story is a
reflection o f dominant cultural values. Foucault (1954) stated that “our society does not wish to

34
a recognize itself in the ill individual whom it rejects or locks up; as it diagnoses the illness, it
*
excludes the patient” (p. 63). Until the 1960s, the deficit or pathological model o f disability - the
“ill individual”- was seldom challenged.
More critical theoretical attempts to define disability and the relationships between
I disabled and non-disabled individuals include: the delineation o f terms like “handicapism”
¥

I (Bogdan & Bilken, 1977), an interest in the “sociology o f acceptance’ (Bogdan & Taylor, 1987;
1989) and theoretical constructions like the “politics o f physical differences” (Hahn, 1988). Each
o f these studies addressed the shift from a negative evaluation o f disability to a more positive one.
. In addition, popular metaphors o f disability have emerged because people with disabilities are

I

more visible and more active. While disabled hero worship can create problems for the majority o f
people with disabilities (Shapiro, 1993), the accomplishments o f individuals like Stephen Hawking

I and Rick Hansen represent powerful contradictions to traditional tragic and dysfunctional views
I o f disability. Even without citing examples o f famous people with disabilities, people with
i

disabilities have jobs, go to school, live at home and shop at the same malls as do people without
disabilities.
Clearly, the social construction and acceptance o f disability has changed or, at least, is
undergoing a change. Disability is not always conceptualized as a “defect." It is seen, by some, as
a challenge or as an opportunity to overcome obstacles. By others, disability is seen as the
imposition o f barriers by the dominant non-disabled society. Most importantly, disability is not
just one thing. In the context o f a more dynamic and evolving view o f disability, the needs o f
parents necessarily reflect a more complex set o f theoretical and practical issues. This social
context includes the presence o f supports for families where there were previously few,
guarantees that children with disabilities receive appropriate education, and, in general, a concern

35
for the rights o f individuals with disabilities. More simply, parents o f children with disabilities are
increasingly expected to be parents. In British Columbia and many other jurisdictions in North
America, institutionalization is no longer an option.
Bigger Stories - Moving awav from Pathology
The formal study o f the counselling and support needs o f parents o f children with
disabilities has evolved since the late 1950s and early 1960s. It tells a multidimensional story frOm
a variety o f perspectives, many o f which are based on a more critical and deconstructed view o f
disability. The following review o f key issues, concepts and findings is far fi’om exhaustive. It is
derived mostly from some o f the larger reviews o f the literature.
Considerable research on counselling parents addresses the stresses parents and families
experience due to the presence o f a child with disabilities. Researchers suggest this area o f study
has been troubled by both methodological problems and a lack o f reliable evidence in defining and
describing the stresses experienced by parents (Glidden, 1993; Homby, 1994; Konstantareas &
Homatidis, 1991). Much current research characterizes parenting stress as multidimensional and
dynamic (Hanline, 1991; Beresford, 1994; Flagg-Williams, 1991). There has been a move away
from conceptualizing all parents as experiencing the same stresses in the same way, and
researchers have paid increasing attention to the issue o f assumed pathology (Singer, Irvin, Irvine,
Hawkins, Hegreness & Jackson, 1993)
Recent literature suggests that, as a population, the parents o f children with disabilities
experience no more or no less stress than parents o f children without disabilities (Mahoney,
O ’Sullivan & Robinson, 1992). For instance, using a large sample o f parents o f children with
disabilities (n=725), Innocenti, Huh and Boyce (1992) found no difference in stress scores
between these parents and the normative sample o f parents from the Parenting Stress Index.

36
Singer et.al. (1993) cited the number o f families experiencing debilitative levels o f stress as
roughly one third o f all families o f children with disabilities. In a meta-analysis o f studies o f the
effects o f a child with disabilities on fathers, Homby (1994) found that little reliable evidence for
eight hypotheses about paternal adaptation. For two other hypothesis, including a hypothesis
about the relationship o f income, education and social class to stress and the hypothesis that
fathers o f children with disabilities tended to desert the family more often, results were found to
be equivocal. Bristol, Gallagher and Schopler (1988), in a comparative study o f mothers and
fathers o f developmentally disabled and non disabled boys, found no directional relationship
between the severity o f a son’s disability and parental adaptation.
In attempting to determine the impact o f disability on parents or parental adaptation to
having a child with disabilities, quantitative researchers have disconfirmed the single story that it is
a universally sad and stressful story. The shift to a multi-dimensional emphasis addresses two
other key concepts relevant to this study: a concern for the meanings attached to having and
raising a child with disabilities, and attempts to frame the problem within a broader ecological
perspective.
The work of Blâcher (1984) and Allen and Afileck (1985) represent landmark studies in
redefining the needs of parents for counselling and support. Blacher looked at previous studies
that supported the notion that parents went through well-defined stages o f adjustment, and found
that the evidence was methodologically problematic as studies were based on clinical observations
rather than controlled experiments. Furthermore, many o f these findings simply could have been
“attempts to perpetuate ideas from the literature “ (p. 67), to prop up theoretical perspectives
such as chronic grief and stage related theories o f adjustment. Allen and Aftleck (1985) sought to
test the notion that stage-related theories were a case o f stereotyping and found that “exceptional

37
variability in parents’ responses may be more the norm than is a predictable pattern o f adjustment”
(p. 201). The authors went on to suggest that other variables, in particular the meaning parents
attached to the presence o f the child with a disability, showed greater promise as a way o f
conceptualizing the issue o f parental adjustment.
Beresford (1994), in a significant review o f the literature on how parents cope and care for
disabled children, distinguishes between problem solving and emotion focussed coping strategies.
In examining the effectiveness o f emotion focussed strategies for reducing stress, he found
conflicting and equivocal results. In contrast, problem solving strategies, in particular positive
restructuring, more consistently yielded findings o f beneficial outcomes. Positive restructurings
refers to changing the way the situation is viewed or, fi’om a narrative perspective, telling a
different story. This suggests that for, parents o f children with disabilities, the construction o f
meaning around their child’s disability plays a significant role in how well parents cope and adapt.
In recent studies on the application o f counselling interventions employing cognitive restructuring,
Davis & Rushton (1991) and Davis (1985) found that, as parents did better on several measures
o f adjustment, their children also showed significant progress on developmental measures. It is
difficult, however, to know the direction o f effect implied by this finding.
Related to the idea o f restructuring the reality o f raising a child with disabilities is the
notion o f the context in which ideas emerge. Recent research literature also attends to issues o f
social ecology (Berry, 1995). This means placing the source o f stresses within a contextual
jframework including macro-systemic issues o f ideology, the development o f social policy, and
culturally based normative views on disability. This is significant to the present study since
I
constructivist counselling theory is concerned with what Berry refers to as revealing the
‘‘realities” o f the various “systems within people’s stories” (p. 383). The problems o f stress and

38
adaptation for parents o f children with disabilities is not entirely a problem o f the individual but is
external to person and located within the larger cultural discourse.
This concern for constructed realities is also a key feature o f the growing disability rights
movement. The next section o f the literature review frames the argument for a more critical
approach to studying the experience of parents o f children with disabilities from the perspective o f
individuals who themselves have been labelled with disabilities.
Provocative Stories - It’s Okav to be Disabled
An emergent critical discourse within the field o f disability studies includes the work o f
disabled political activists. The title o f this section is taken from an article by Shapiro (1995),
editor o f the Disabilitv Rag, a periodical about disability written from the perspective o f
individuals with disabilities. Disabled activism, as compared to other social movements (gay and
lesbian rights, the women’s movement and environmentalism), is relatively recent.
Writers working from this position discuss the subject o f disability in what many non­
disabled individuals might view as provocative ways. The slogan “it’s okay to be disabled”
parallels “we’re here, w e’re queer - get used to it.” Unlike the gay rights movement however, the
disabled rights movement has received much less attention. The idea that it is okay to have a
disability continues to be controversial. This may be particularly so as experienced by parents of
children with disabilities. There is an ideological legacy o f deficit conceptions o f disability, as well
as a subjugating social construction o f parenting, which stresses that parents are successful when
their children are accomplished, able-bodied and “normal.” This is what Oliver (1993) describes as
a “fetishism for normality.”
In reviewing the critical literature on disability, there are a number o f examples o f
narrative accounts by children with disabilities about their parents and families. The importance o f

39
these stories with respect to the current study is that they describe particular versions o f
subjugating stories, specifically in regard to issues o f fixing, concealing and protecting individuals
with impairments. The first story is an account by a writer with a visual impairment:
Some of my earliest memories are o f anxious relatives trying to get me to see
things. I did not understand why it was so important that I should do so, but was
acutely aware o f their intense anxiety if I could not. It was aesthetic things like
rainbows that bothered them most.”( French, 1993 p.69)
French goes on to relate that at one point in her childhood she simply started pretending to be
able to see the rainbow. She internalized the dominant story that not to be able to see was
dysfunctional and disturbing. The intense anxiety o f her relatives maintained the problemsaturated story of visual impairment. If the subjugating nature o f this discourse on disability had
been unmasked sooner, French contended that her experience in denying her own reality might
well have been less painful.
The second example describes what could be called the “hide-it-away” story about being
the parent o f a child with disabilities. The following passage is fi'om the play. Creeps, by David
Freeman, a writer with cerebral palsy:
What do you guys know about the bullshit I put up with? My old lady, now get
this my old lady has devoted her entire goddamn life to martyrdom. And my old
man...Wait’ll ya hear what happened last night. He invited his boss over for dinner
and you know where the old bugger wanted me to eat? In the kitchen. (Freeman,
1971, p. 10)
While this passage is a literary example, it is informed by Freeman’s experiences as an individual
labelled with a disability. Again, it brings to light the influence o f old stories, in this case, the

40
negative influence of stigma and shame. As discussed earlier, the concealment and shame o f
having given birth to a child with disabilities was at one time a dominant assumption by
professionals and the general public.
The third example is from a qualitative study conducted by Bogdan and Taylor(1982)
which involved in-depth interviews o f two formally institutionalized individuals labelled with
mental retardation. One o f the subjects, Ed, describes his experience with his mother:
The doctors told my mother that I would be a burden to her. When I was growing
up, she never let me out o f her sight. She was always there with attention. I f I
yelled, she ran right up to me. So many children who are handicapped must be in
that position - they become so dependent on their mother. Looking back I don’t
think she ever stopped protecting me, even when I was capable of being selfsuflBcient... She never really believed... that I could be like everybody else.
(Bogdan & Taylor, 1982 p.31)
This passage demonstrates the theme o f protection. It also places it in the context o f parent
professional relationships, referring to the doctor’s admonition that the child would be a “burden."
Despite Ed’s ultimately successful attempt to be self-sufficient, his mother’s relationship is still
informed by the subjugating discourse that having a mental handicap equals dependency.
These three examples are illustrative of how the issue o f having a child with disabilities can
be constructed according to a set o f assumed realities. The presentation o f these examples is not
meant to suggest stereotypes o f parents o f children with disabilities as callously rejecting,
neurotically over-protective or thoughtlessly in denial. Pointing to examples o f problem-saturated
narratives has the effect o f suggesting alternative stories. It is okay to not see rainbows,
acceptable to be in a wheelchair and possible to be self-sufficient despite taking longer to leam

41
things.
Kune (1992) contends that, “we live in a society that holds forth belonging as something
that is earned through academic or physical achievement and a host o f other socially valued
criteria. Belonging is no longer an inherent right o f being human” (p. 6). The preceding stories
speak to the need to belong and to be accepted as a fundamental need which is often denied to
people with impairments. The critical discourse on disability and family is about unconditional
acceptance. This represents a stark contrast to Kennedy’s (1942) and Olshanslqr’s (1962)
admonitions that the encouragement o f parental acceptance o f children with disabilities was futile
and unrealistic. The stories o f individuals with disabilities, based on these examples, suggest that,
not only is parental acceptance desirable, but that it should be a right o f all humans regardless o f
ability.
To conclude this section, a quote by Turnbull (1988) is presented to suggest that elements
o f the critical discourse on disability are already being discussed in the literature on counselling
parents and that this dialogue has begun to revolve around issues o f unconditional acceptance.
I will never forget the conversation with the mother o f a daughter with Down
Syndrome who shared with me the profound revolution in her thinking when it
occurred to her when her child was seven years old that she could be whole in her
eyes and she could love her for whom she is today rather than whom she might
become. A challenge for us to consider in conceptualizing family support is how to
make this revolution happen much earlier and prevent that mother and many others
from the heartache and detachment o f not being able to love unconditionally a
child with a disability (p.265).
Another example o f parents in a different revolutionary mode, can be seen in “the M others

42
From Hell” who are “ a loose-knit...group o f women who staunchly advocate for the rights o f our
children with disabilities” (Gerlach,1996). Parent activism represents a variation o f Turnbull’s
“revolution” and similarly, points to another possibility for telling a different story. The Mothers
from Hell advocate the use o f humour as a way o f making sense of their life situations. Their story
speaks to the fact that some parents have come a long way from tragic and deficit views o f
having a child with a disability. In the next section o f this review the idea o f telling “different
stories” is explored in greater detail.
Different Stories - The Case for Constructivist Counselling
In a qualitative study by Knoll (1992), the parent o f a child with disabilities describes her
son: “Robbie is truly a blessing. People in our lives, because o f Robbie, are people we leam from,
are inspired by... As things work out I couldn’t be happier” (p. 35). Chronic sorrow does not
appear to be a central concern in this parent’s experience with her child. Examples such as these
point to the fact that there are parents o f children with disabilities who have re-authored the tragic
narrative. Considerable recent research has examined and detailed the positive adaptation o f
parents and families of children with disabilities ( Beavers, Hampton, Hulgus & Beavers, 1986;
Trute & Hauch, 1988; Mahoney, 0 ”SuUivan & Robinson, 1992; Bennett, DeLuca & Allen,
1996).
The title o f this study refers to telling different stories. This is also meant to be a play on
two meanings o f the word different - different (alternative) stories about being different (not like
the majority). This is one o f the central issues o f both constructivist counselling theory and critical
postmodern theories in the field o f disability studies. From the latter perspective, disability is seen
to have been historically and socially constructed as a mostly negative problem o f individual
adaptation. The alternative story is that disability is a feature of social and ideological structures

I
I

I

43
constructed, in part, in order to maintain subjugating belief systems about human normality and

I human ideal types (Kiel, 1995). People with impairments are excluded or rejected, not because it
is for their own good, but because it gives validity to the dominant narrative o f how people are
“supposed” to live.
To a degree, medical and bureaucratic narratives on disability continue to construct
disability as an individual pathology focussing on deficit and dysfunction (Humes, Szymanski &
Hohenshil, 1989). Some o f the articles reviewed for this study appeared to work firom this
perspective, referring for example to things like “the stresses created by the care o f a retarded
child” (Abbott & Meredith, 1986). While having a child who is intellectually different than others
poses challenges for parents and many o f those challenges are stressful, the linking o f that stress
to the disability is problematic from a critical perspective. Being “retarded” is a clinical label for a
condition o f having limited cognitive abilities. It means thinking processes are slower than a
statistical norm, in as much as those processes are measured by standardized IQ tests. The stress
created by the care o f the child is not a feature o f retardation or the “retarded child”; it is also
grounded in the ecology o f a society that values the ability to read and write, to think quickly and
eflSciently and to behave according to established rules of behaviour. When that child is viewed as
being acceptable for being simply who he or she is, including cognitively, then the different story
may be far less stressful.
In a qualitative study, Bennett, Deluca and Allen (1996) noted that parents felt that
positive acceptance o f their children, despite their disabilities, was a key component o f positive
adaptation. This is an interesting finding, considering that, in more traditional perspectives on the
counselling of parents o f children with disabilities, working towards ultimate acceptance o f the
child with disabilities is seen to be “unfair and unrealistic” (Bernier, 1988, p. 595). In that

44
prejudices can take a long time to deconstruct, counselling parents towards ultimate acceptance
might have negative ramifications. From a more critical perspective, however, how fair is it to
relegate children to a problem-saturated narrative where they internalize a sense o f their own
difference in the world as being the result o f something fiindamentally and intrinsically
dysfunctional or undesireable about them? And, similarly, how fair is it to parents? Is not the
statement, “I couldn’t be happier” better, and ultimately more productive than the ideas
embodied in the concept o f chronic sorrow? Further to this, what purpose does counselling serve
but to help people be happier?
These questions may be rhetorical, but they are also pragmatic. The empowerment o f
parents derived through a re-authoring o f their relationships to the “problem”o f disability, has the
potential to change both the quality o f family life and the value o f people with disabilities within
the larger society. At least, it presents one less barrier. For a counsellor or other support person,
this does not have to mean directing parents towards some artificial sense o f acceptance, but
instead can take the form o f exposing parents to a variety o f stories about being the parent o f a
child with disabilities.
In this review o f the literature, I have traced the historical context o f the counselling o f
parents of children with disabilities fi'om an older view reflecting a set o f single stories (rejection
and chronic sorrow) to the more current critical perspective that accepts many stories, and more
positive ones. I have also discussed dynamic changes in the social construction o f disability, and
suggested that perhaps the most important variable in how parents resolve issues o f having a child
with disabilities is ontological rather affective. Finally, I have considered the experiences of
children with disabilities that suggest that old stories about being the parent o f a child with
disabilities need to be, and can be, deconstructed in favour o f more positive, hopeful and

45
empowering ones.
With respect to new stories about being the parent o f a child with disabilities,
deconstruction presents a useful framework for understanding the process o f change and what
kinds o f counselling interventions might be appropriate for parents. Micheal White (1991)
describes deconstruction in therapy as an active process with the intent o f helping people take
control o f their problems, rather than letting their problems control them. Disability, in the socially
constructed sense, is a problem and like other problems it has its own way meddling in people’s
lives. As a problem, it is supported by a dominant discourse that constructs the reality o f being
disabled as problematic, negative and stressful. However, many people are beginning to author
different stories about disability that contradict and challenge the old story o f tragedy and pain.
These new stories point to alternative solutions where impairment is no longer constructed as a
problem. A person who actually travelled all over the world in a wheelchair, the M others From
Hell, and Robbie’s parents who came to see him as a joy rather than as a burden are
representatives o f these new stories.
Zimmerman and Dickerson (1996) introduce their book on narrative therapy with the
statement, “we’re not in Kansas anymore” (p. 9). This statement represents their metaphor for
the paradigm shift in counselling from a modem to a postmodern context o f inquiry. “Kansas,”
for the parents o f children with disabilities, is the world o f chronic sorrow and deficit descriptions
o f disability. While many parents go back there from time to time, there are many more places to
explore. The present study seeks to expand on the idea that parents indeed have a greater range o f
stories to tell.
The Research Questions
In the review o f the literature, I have detailed several key issues relevant to the counselling

46
of parents o f children labelled with disabilities. Most importantly, I have put forward the position
I that there are a number o f discourses on being the parent o f a child labelled with disabilities. I
I have also described constructivist counselling practise with particular attention to the theoretical
I principle of deconstruction.

I

I Hvpothesis

I

g

The stories o f parents o f children labelled with disabilities about their own processes o f
adaptation, growth and coping deconstruct the dominant discourse on disability and its effect on
parents.

II

Research Questions

I

social discourses about being the parent o f a child labelled with disabilities?

V

1. In what ways have these parents of children with disabilities deconstructed the dominant

.

I

2. With regard to counselling and support, do these parents’ stories identify assumptions

i

I

made by help-givers based on dominant constructions o f disability? Do these assumptions impact

4

I
i
I

negatively on the counselling and support they receive?
3. A^Tiat are the particular kinds o f “problems” that these parents identify which form the
content of counselling? For example are they concerned with issues o f their own grieving and
sadness or are they concerned with issues of making sense, reframing perceptions and reauthoring

j

their experience, or are there other main focuses?
4. Are the constructivist theoretical principles o f narrative therapy relevant and useful in
the practise of counselling parents o f children with disabilties?

47
CHAPTERS
METHODOLOGY
Design
This study used a focus group design with three groups o f parents o f children labelled with
disabilities. I collected qualitative data in the form o f parent narratives about their experiences
raising a child with a label o f disability. The focus group method is described by Stewart and
Shamdasani (1990) as a group interview suited to producing “a rich body o f data expressed using
the respondents’ own words and context” (p. 6). As a qualitative method, Morgan (1988) sees
focus groups as combining the advantages o f participant observation and individual interviews.
As well as gathering content information, researchers are able to observe the dynamics that exist
within a particular group. This study focused on content and the dynamics o f how particular
stories are constructed or deconstructed rather than on the interpersonal dynamics o f groups o f
parents of children with disabilities.
Participants
Study participants were a sample of convenience o f parents o f children with disabilities
(n=15). Two groups (n=7 & n=3) were recruited in Lakeville^ and one (n=5) in Mill Town British
Columbia. One o f the groups in Lakeville (n=3) was recruited through the local Child
Development Centre (CDC) and was not a pre-existing support group, whereas the other two
groups were pre-existing support groups for parents o f children labelled with disabilities. In
contacting participants for the CDC group, the assistance o f centre staff was utilized. They
contacted participants individually and gave them an opportunity to ask questions about the study
prior to making a decision about participating. In the case o f the existing support groups, the

‘ Community names throughout the study are pseudonyms.

48
moderator met with or contacted a representative (rep) o f each o f the groups to explain the study,
to answer questions and to provide informed consent forms for the rep to take back to the group.
Support group members gave permission to the group rep to provide names and phone numbers
to the moderator. The moderator contacted group members individually to arrange the interview
date and time for the Mill Town group. In Lakeville, the rep recruited participants and arranged
the interview.
In order to determine the characteristics o f the focus group participants in this study, a
brief questionnaire requesting demographic data was completed by all participants (see Appendix
A). This information was intended for descriptive purposes only. A summary o f demographic data
is presented in the results section and in tabular form in Appendix B. Table 1 presents a
breakdown o f participation and recruitment for each group. The numbers in brackets are the
numbers o f parents who had originally agreed to participate in the study.
Group

number o f parents

number o f families

number o f children
with disabilities

Mill Town (MTSG)

5 (7 )

4 (5 )

4 (5 )

Lakeville (LVSG)

7 (9 )

5 (6 )

5(6)

Lakeville (LVCDC)

3 (7 )

3 (6 )

6 (9 )

12 families (17)
15 parents (23)
total
Table I - Summary o f Participation and Recruitment

15 children (20)

In all three groups, more parents were recruited than actually participated. With the
Lakeville and Mill Town parent support groups, this was due to difficulties in accessing
babysitting. In the Lakeville CDC group, seven parents were originally recruited for the focus
group. Four o f the parents who had agreed to participate in the study cancelled at the last minute
due to illness and family emergencies. Rather than rescheduling the group, the interview
proceeded with three parents.

49
The sampling approach was also purposive in that it sampled intact groups o f parents who
are engaged in a therapeutic setting and who have already shared some o f their experiences. While
participants in the Lakeville CDC group were not in a pre-existing support group, they were
acquainted with each other through various educational programs at the centre. This minimized
the impact o f participants’ discomfort in sharing personal stories and suited a focus group
methodology as there was already a pre-existing group dynamic. As stories about coping and
adaptation are the focus o f this study, parents who had joined a support group were an
appropriate target population. The use o f three focus groups gathered more narratives
representing a variety o f parents o f children with disabilities. Parents’ children were at various
developmental stages and had various types o f impairments. These groups included three fathers,
an adoptive couple, one foster parent and ten biological mothers. One limitation o f the
convenience sampling was that all o f the parents’ children in the two parent support groups were
female.
Procedures
Focus groups typically are structured as a moderated discussion with relatively fewer
questions than an individual interview. Individual responses to questions as well as the discussion
o f issues between participants are the usual sources o f data. The present study, rather than using a
set of predetermined questions, used a two dimensional questioning protocol derived from
narrative therapy. This involved attention to two principles o f narrative therapy - extemalization
o f problems and the use o f deconstructive questioning. All focus group sessions were audio-taped
and transcribed and were conducted with the assistance o f a co-moderator. Focus groups sessions
were conducted in local college or university meeting rooms. I was the primary moderator for the
interviews.

50
Focus group sessions began with an introduction and a warm up activity involving having
participants introduce themselves with information that assisted moderators in remembering
individual’s names. This was intended as an ice-breaking activity to facilitate participant comfort
and to set the tone for the session. As an exception, icebreaking was not deemed necessary in the
Lakeville Support Group as all but one o f the participants and the moderator were previously
acquainted. The moderator provided an overview o f the session detailing the purpose o f the study
and explaining ethical safeguards in the study. Before proceeding to the first phase o f the
interview, participants were given the opportunity to ask questions.
I began by asking participants to share with the group their experiences in raising a child
with disabilities. The question - what has been your experience in raising a child labelled with
disabilities? - was the only predetermined and specific question used in this study. This was
deliberate. The participants determined the content of subsequent discussions. This was in keeping
with Kreuger’s (1994) notion that focus groups work best with a broad open-ended question and
a moderator who has good group facilitation skills and an awareness o f interpersonal dynamics.
The study was premised on the idea that counsellors cannot presuppose issues o f content.
In order to ensure that participants were being provided the chance to determine the subject
matter, probe questions were open-ended and focussed on the purpose o f the study. Probe
questions were used infrequently in all three o f the interviews since parents had a great deal o f

information to share. Where probes were used, they tended to elicit elaborations o f issues that
parents had already brought up. Throughout the sessions, it was reiterated that parents were free
to discuss any issue they wished. In some o f the discussions the moderator also engaged parents
by sharing related stories. This was done only in relation to issues that parents had already
discussed. Sharing stories also helped to establish a level o f comfort for parents. The tone o f the

51

II sessions was relaxed and informal.
I

During the early stages o f the interview, I listened, reflected and clarified statements made

]

I by parents. This ensured that specific content was determined by participants and was not being

I introduced by the moderator. The co-moderator recorded broad themes or topic areas in a

II notebook. Notes were later used to summarize the discussions. They also provided a w ntten
j
I account o f the interviews that was useful during the analysis o f the data.
!

During the interview, I attempted to refer to problems or issues using externalized
language. Extemalization is a key aspect o f narrative therapy. As discussed in the literature
review, extemalization refers to the process o f describing problems as external to the individual
rather than locating problems within the person (White, 1990). For example, when parents
brought up the issue o f difficulties in looking for support, the issue was discussed as ihg problem
o f locking for support rather than as vour difficulties in looking for support.
At the end o f the interviews, participants were asked to come to a consensus ranking o f
three o f the most pressing or important problems o r issues. The priorization o f themes sought to
answer the question what kinds o f problems or issues parents identified as important for
counsellors. The use o f priorization provided a measure o f validity as it summarized and clarified
the content o f the discussions.
Use o f Deconstructive Questioning
Throughout the interview, it was my intent, whenever possible, to ask questions that
facilitated parents’ deconstructed views. Examples o f deconstructive questioning included such
questions as; How has [the problem] affected you in the past and how has your relationship to
[the problem] changed? How do you think other people’s ideas about how [the problem] is
supposed to affect parents o f children with disabilities strengthens [the problem’s] position? How

52
»

has your involvement with [the problem] influenced how you look at other people? When [the
problem] came into your life how did it take over? How did you finally defeat [the problem]?

I Where deconstructive questioning was used, it involved the use o f the question how did that (the
problem or issue) change?
I

These questions were derived fi'om the therapeutic questioning process o f narrative

I

I therapists (Zimmerman & Dickerson, 1996; Party & Doan, 1994; White, 1991). They were
modified to fit with both the content o f this study and with a focus group methodology. The
intent o f this study was not to provide therapy to parents, but to engage parents in a discussion
about the therapeutic change process as they have experienced it. The purpose o f deconstructive
questioning was to bring into the discussion an awareness o f how problems are maintained in
relationship to dominant social discourses. It was evident early in the first interview that parents’
narratives already provided responses to these questions, so deconstructive questioning was used
less than was originally intended. The use o f the questions during the actual interviews felt
I artificial.
In summary, the interview process included: an open-ended elicitation o f the parents’
narratives about raising a child with disabilities; attention to the extemalization o f issues or
problems which stemmed from that narrative; the priorization o f the top three issues o f
importance to the parents and; the attempted use o f a deconstructive questioning process or
protocol. I used open-ended questioning and did not attempt to introduce specific content into the
discussion. For the most part, parents engaged actively in the interview process, had a number o f
issues they wanted to discuss and provided little opportunity for the moderator to ask questions.
The use o f deconstructive questioning involved being aware o f how parents had defeated or
changed their relationship to a problem. In some cases, this was as simple as asking, “How did

53
that change?
Roles o f the Moderators
As the moderator in this study, I introduced and facilitated the focus groups. The role o f
the co-moderator was primarily as a procedural support person. She recorded information on a
flip chart or notebook, assisted with the rank-ordering o f problems and acted as an observer.
Following the sessions the co-moderator and moderator debriefed the interview process, noting
inconsistencies in the application o f the interview process, sharing observations about how
specific questions did or did not work as well as clarifying observations on issues related to group
dynamics and the content o f parents’ narratives.
The co-moderator was a fellow graduate student in counselling who is familiar with
narrative therapy theory and practise. I provided her with a training session that reviewed and
rehearsed the interview process and her role in it. An interview guide developed for this study
specifically delineates the moderator and co-moderator’s roles, (see Appendix C).
Ethical Considerations
Ethical considerations included issues related to the differentiation o f
counsellor/researcher roles, my position as a professional providing services to individuals with
disabilities in the same community and the potential risks associated with the disclosure o f
personal information o f individuals within a group setting. Each of these was addressed in the
informed consent letter (Appendix D), which participants received and returned before the study
was conducted. A brief elaboration o f these issues follows.
Participants were informed that the purpose of the focus group was to gather information
for an academic study and not to provide counselling. It was, however, acknowledged that there
was a therapeutic benefit to their participation. Participants were informed that they did not have

54
to disclose anything they did not feel comfortable sharing and that if they did experience difficult
emotions, these would be de-briefed following the session. Agencies assisting in the recruitment
o f participants were informed o f the nature o f the study and these potential risks beforehand and
agreed to be available if needed.
Some participants were the parents o f current, past and potential students in the program I
teach. Group members with whom I had a pre-existing relationship were addressed on an
individual basis clarifying that my role was research-related rather than tied to my role as an
instructor at the college. Participants who knew me were encouraged to hold back any
information they felt created a conflict for them because I knew their child. None o f the parents in
the study were currently enrolled in my program although three had prior experience with me as a
teacher.
Participants were informed that they and their children would be assigned a pseudonym in
the finished study and that if a unique aspect o f their child’s disability was seen to identify them,
this would be addressed on an individual basis. Two parents gave information that they believed
might inadvertently identify their child in the finished study. In these cases, their children’s specific
diagnoses have not been named. In addition to this, the names o f particular agencies have been
glossed or not mentioned in relation to a specific community, especially if a parent’s statement
could be seen to be critical o f that agency. Names o f schools, similarly, have been glossed in the
final report o f the results and names o f other people not present at the interview have been

assigned a pseudonym.
Data Analysis
The first step in the data analysis process was to compile and summarize the facilitators’
debriefing notes from each group session. I reviewed whether the sessions followed the same

îI process and made key observations on people’s reaction to the process. I compiled demographic
Îj data from the questionnaire for each group and as a whole sample and summarized the topic areas
1 from the consensus-ranking phase o f the interview. Group demographics were compiled and

I

noted for descriptive purposes only.

‘
Interviews were audio-taped using multidirectional microphones on standard cassette
tapes. In each interview, an additional tape recorder was used as a back-up. One o f the taped
j
I sessions (LVSG), utilized a different type o f microphone and recording system than the other two
groups and was not as easily heard on the finished tape.
An assistant completed the initial transcription o f the tapes, saving each interview in a
separate computer file. Using a hard copy o f each interview, I listened to each interview two more
times and filled in details that the transcriber missed. Some o f the dialogue was not transcribed,
either because there were too many people talking at once, or because cassette tapes were being
changed while parents spoke. The quality o f the taping was generally good so very little o f the
interviews were missed.
For the purposes o f this study, I have not made between group comparisons. Instead, the
thematic analysis treats the interviews as one unit. Some descriptions o f intergroup differences are
mentioned in the result section but this was not a major focus. Interpretation o f the data involved
noting how the content o f parents’ dialogue compared and contrasted with central topics in the
professional and academic literature. Analysis also located specific statements and themes which
suggest that parents’ views were or were not a deconstruction o f the dominant discourse.
Once the interviews were transcribed, analysis involved sorting specific passages,
statements and bits o f dialogue into themes. Sorting was accomplished through a cut and paste
procedure using WordPerfect 6.1 for Windows. Separate computer files were created for each
theme. Interview files and theme files were able to be open simultaneously. Once statements were

56
cut from the interview, the interview file was saved with the sorted passages removed. Cutting
and pasting continued until each interview file contained either indecipherable dialogue or
unrelated bits o f conversation (e.g., one o f the groups discussed the Olympics).
There were three rounds o f sorting, recombining and categorizing themes. In round one,
25 themes emerged. These were resorted and recombined into 11 themes in round two. In round
three, following an analysis using deconstructive criteria and a first draft o f the results, themes
were refined and, in one case, re-split into 13 themes. Table 2 summarizes the three rounds o f
sorting.
Round 1
25 themes

Round 2
11 Themes

Themes included: community relationships, horrible pictures, larger discourses,
comparisons, grief, guilt, stress, diagnosis, getting services, government, humour,
independent living, interventions, medical issues, normal parenting, other family
members, other parents, barriers, positive outcomes, parent essentializations, parent
professional relationships, school, siblings, support groups, waiting
Five themes combined several of the original 25 into five broader themes. These included:
meeting children’s needs, affective issues, parenting stories, b u re a u c ra q r and supports.
Six themes remained intact fi'om the first round. These were: barriers, siblings, larger
discourses, horrible pictures, comparisons and diagnosis.

These themes included: The six intact themes from the previous two rounds and four of
the combinations from round two. Two themes (parent essentializations and assessments
of
normal parenting) were separated from the combined theme of parenting stories in
13 themes
round 2. The final theme, non-pathological views, was created as a new theme at this
point. Three of the themes (siblings, supports and barriers) are not presented in the results
I
chapter
Table 2 - Summary o f Thematic Sorting
Round 3

Ten o f the final 13 themes were then assigned to one o f four categories o f stories: stories
about assumptions, stories about dealing with difference, stories about professionals and stories
about disability. The choice o f the term stories was in keeping with a narrative therapy
il.

perspective. This final categorization o f themes was done in order to provide conceptual
organization. The decision on these final categories evolved through a process o f locating the
dominant ideas within each theme. Stories about assumptions and stories about professionals were

57
fairly straight forward categorizations. Horrible pictures and parent essentializations are about
other people’s assumptions. Meeting the child’s needs and bureaucracy are about professionals

I and professional discourses. The other two categories took more thought and several other

!

I possibilities were tried before deciding on stories about difference and stories about disability.

I Categorical criteria are elaborated in the results chapter.
I

i

The creation of themes was bounded in three ways. First, six of the themes were simply
topical. Parents mentioned or discussed the subject o f the theme in their conversations. The
sorting process, in some instances, utilized the search function o f the word processing program.

I

I Topically derived themes included: affective issues (guilt, grief, humour), meeting children’s needs
y (a number o f sub-themes), bureaucracy, diagnosis, siblings and supports.
Five themes were deductively derived from criteria based on principles from constructivist
■j

I theory and critical perspectives on disability. Specifically, these were: the attention to historical

I discourses, the idea o f culturally subjugating discourses about disability (horrible pictures), the
i idea o f essentializations, the concept o f barriers and deconstructions o f assumptions about
I
I parenting. The theme o f comparisons was both topical and theoretical. Parents discussed the topic
I o f comparisons in some cases and in other cases I have interpreted their statements as being a

comparison o f their child to other children. The final theme, non-pathological views, was
constructed as a category o f summative or general statements about the experience o f raising a
! child with disabilites.
Narratives were compared with existing theoretical knowledge in the area o f counselling
parents o f children with disabilities and gleaned for specific examples reflective o f
deconstruction. Using a hard copy o f the sorted themes, I wrote notes, highlighted specific
sentences, and compared specific themes to specific concepts from the literature review. This

58
process also involved noting my evaluation o f parents’ narratives and being careful in being open
to other perspectives. Since the completed sort involved looking at over 300 specific passages,
not all o f the data are reported in detail.
The criteria for determining whether a statement reflected deconstruction was as follows:
1) the statement questioned or dismissed what was offered as legitimate knowledge and was
perceived by the narrator as a cultural value o r assumption; 2) the statement appealed to
individual validity o f interpretation rather than “widely held beliefs;” 3) the statement pointed
directly to a contradiction with taken-for-granted assumptions about the nature o f the phenomena
in question; or 4) the statement contextualized or refiamed the issue. Examples o f deconstructive
statements were mentioned in the literature review - tragedy is in the eye o f the beholder, it’s okay
I to be disabled, you are allowed to feel whatever you feel. Non-deconstructive or essentialized

II statements or ideas include: What parent does not wish that their child could be normal?, having
II a defective child is tragic, or feelings corresponding to a pattern. Statements which did not fit the

II criteria o f deconstruction were generally those statements that tended to appeal to the notion o f
II “accepted wisdom.” For example, one o f the parents in the study referred to guilt as “something

II every parent o f a child with disabilities experiences.”
I

In addition to these criteria, I looked for examples o f statements which suggested the
presence o f a subjugating cultural discourse, or, more precisely, other stories or discourses that
parents perceived had a negative effect. In this regard, I paid particular attention to parents’
criticisms of and comments about professionals, professional discourses and popular metaphors
; about disability. This analytical framework was derived from Berry’s (1995) idea about revealing
I

the realities o f systems within people’s stories, as well as Woodill’ s (1994) description o f popular

I
and professional metaphors o f disability.

59
The overall approach to data analysis is similar to Addison’s (1992) description o f
grounded hermeneutics. A key aspect o f hermeneutic research, according to this author, involves
offering “a narrative account o f how a problem is developed and is maintained; and ofifer(ing)
directions for positive change”( p. 113). This process is interpretive, subjective and
unapologetically biased or grounded in a particular theoretical o f philosophical positon. It should
be emphasized that while I have attempted, as much as possible, to act as a conduit for these
parents stories, I have done so through a particular theoretical and philosphical lens. My position
on disability is that impairment need not be dysfunctional nor tragic, but that it is socially and
historically constructed as such, often to the detriment o f individuals who have impairments.
To provide some measure o f interpretive dependability, examples o f parents’ stories
presented in the results were reviewed by an independent observer together with the criteria for
ascertaining whether a statement represents a deconstructive statement. The observer was an
individual with no prior knowledge o f the content o f this study but who was familiar with
narrative therapy techniques and critical constructivist theory. The results o f this dependability
checking are discussed in the next chapter.
In addition to the interpretive dependability check, the dependability o f the thematic sorts
has been determined by providing another independent observer with a selection o f the statements
presented in the final analysis together with the theme and a brief description o f how each theme
was derived. The observer was asked to sort the statements into their various themes. These were
then compared with my own analysis. The individual in this case is an individual with a
background in special education and a number o f years o f experience working with individuals
with disabilities and their parents.
In summary, the analysis o f data included: 1) a compilation o f demographic data.

60
facilitator debriefing notes and information from the consensus-ranking phase o f each interview;
2) audio-taping and transcribing the focus group sessions; 3) three rounds o f sorting statements
and passages from the transcripts into 13 themes and a combining o f 10 o f these themes under
four broad categories; 4) analysis o f the themes using criteria for deconstructive and nondeconstructive statements as well as a grounded approach tied to the constructivist idea o f
subjugating cultural discourses; and 5) interpretive and thematic dependability checks by separate
independent observers.

61

CHAPTER 4
RESULTS
In this chapter, before proceeding to a detailed description o f each category, theme and
sub-theme, I present a summary o f demographic information and the results o f the dependability
checks. The chapter concludes with a discussion o f issues that parents did not deconstruct and an
overall summary o f the results.
Summary o f Demographic Information
The children o f parents in the focus groups were at various stages o f development. The
oldest child represented was 30 years old and the youngest was 18 months. Three married couples
participated in the study so there were 12 families represented. One couple were adoptive parents
o f a child with an acquired impairment. There was one foster mother o f four children with various
impairments. The rest o f the participants w ere the biological parents o f their children. There were
3 fathers and 12 mothers. The majority o f parents, 10 o f the mothers and 2 o f the fathers, were
biological parents.
In total, parents’ narratives represent experiences with 15 different children. Children’s
primary impairments included physical (n=4), developmental (n=8) and learning disabilities (n=3).
O f these, 4 children had multiple impairments including one who was visually impaired. Five o f
the children had been diagnosed with specific genetic conditions which are not named in the study
to avoid identifying the parent and the child. All but 2 o f the children had congenital conditions o f
impairment.
One o f the couples in the study was Asian. The remainder o f the participants were
European- Canadians. Two participants were single parents; 1 o f them was a widow. More than

62
half (n=7) o f the families had combined incomes over $50,000 per year. Two single parents had
incomes under $20,000. Most o f families (n=8) had 2 siblings, including the child with disabilities.
One parent had only the child with disabilities and 3 families had 3 children. The foster mother had
3 biological children as well as 4 foster children with disabilities. While data on the age and gender
o f the children was not requested with the use o f the demographic survey, information from the
interviews revealed that 5 o f the children were o f preschool age, 5 elementary school age, 2 highschool age and 3 were adults. Ten children were female and 5 were male.
The majority o f parents (n=8) had some college or technical training. Four parents had
; some university education and 1 a bachelors degree. Two o f the parents reported that the highest
level o f education they had attained was secondary school graduation. Two parents were between
the ages o f 25-34, 7 parents between the ages o f 35-44, 4 parents between the ages o f 45-60 and
I 2 parents were over 60 years o f age.
I

Parents reported various combinations o f prior experience with emotional and

I psychological supports. Only 4 o f the parents reported seeking out the services o f a trained
I

; counsellor. The most common supports were those provided by family or friends (n=l 1) and
i other kinds o f professionals involved with their children (n=l 1). Ten parents reported seeking out
: the emotional support o f other parents o f children labelled with disabilities, while 2 said they had
i

not sought psychological or emotional supports. A detailed summary o f demographic data is

jI presented in Appendix D.
Validity and Dependability o f the Results
The results o f this qualitative analysis are grounded in a constructivist theoretical and
philosophical orientation. The validity o f these results relates to the authenticity o f parents’
perspective, the depth and clarity o f parents’ individual stories and the dynamic nature o f focus

63
group interaction. In the case of the latter point, details in many o f the interviews emerged in
relation to discussions between group members and similarities in content between the three
groups. In analyzing the results, I have attempted to act as a conduit for these parents’ stories.
The authenticity o f these results, in part, relates to the open-ended nature o f the stimulus
question. Parents were asked to share whatever they thought was relevant. I made a conscious
effort not to introduce content during the interview. The use o f multiple observations (3 groups)
with parents o f children with different kinds o f disability and at different stages o f development
provided a breadth o f perspective. The consensus-ranking o f issues was also a way o f enhancing
validity. Through three rounds o f sorting and categorizing, themes were clarified and better
defined.
The interpretive dependability check resulted in the coder concurring that 24 o f 28 (85%)
statements represented one or more o f the criteria for deconstruction (see Appendix E). This is
an acceptable level o f inter-rater agreement. He also related that some o f the selected statements
were difficult to assess because they were presented out o f context and because he also did not
have a background in disability-related issues. He added that the criteria, as they were presented
to him, were not altogether clear. This suggests that, by clarifying criteria and providing a training
session for coding, inter-rater dependability would have been higher. It would be helpful as well to
complete the check with other observers.
The test o f dependability o f the thematic analysis involved having a different coder sort 20
randomly selected statements into the themes presented in this study. This observer concurred on
12 o f the 20 statements after reviewing statements once. The eight non-concurrent statements
were reviewed again by the observer and o f these six were concurrent with the observers second
choice. I believe that this inter-rater agreement is more reflective o f insufficient clarity o f the

64
coding definitions and the lack o f training o f the coder than o f lack o f dependability o f the
thematic analysis. It is not suprising, given that I have contributed a great deal to the construction
o f this thesis, that another observer would express a different perspective.
Parents’ Stories
Within all of the interviews, parents discussed a number o f issues related to their
experiences in raising a child labelled with disabilities. They provided richly detailed anecdotes
about the struggles they have faced as well as the rewards they have gained. In telling their
stories, these parents reflected on wider social issues, related provocative and positive
statements about some o f the professionals who are in their lives and shared their lustrations,
sorrows and joy poignantly, honestly and often with humour. In the end, the focus groups
provided a broad forum for parents to discuss a wide variety of issues. While there were some
inconsistencies in the application o f the interview process, these parents had many stories and
welcomed the opportunity to tell them.
Working from a critical constructivist framework, four broad categories encompassing
ten themes were induced following the process o f thematic analysis described in the methods
chapter. The completed analysis o f parents’ stories included the following thematic categories:
stories about other people’s assumptions, stories about dealing with difference, stories about
professionals and services and, finally, stories about disability. Each category includes a number o f
themes which are summarized in Table 3.

65
1

Stories About Other People’s Assumptions

Stories About Dealing with Difference

1j
Horrible Pictures
3 Examples o f parents’ stories about initial
1 prognoses from medical professionals and
examples o f appraisals within the general view.

Affective Issues
Parents’ accounts o f feelings (grie^ guilt and
humour) related to coming to terms with their
children’s disabilities.

Essentializine Stories
• Examples o f parents’ stories about ways they are
1 stereotyped, labelled and perceived by others.

Assessments o f “Normal” Parenting
Examples o f parents’ stories about parenting in
general.

— ------------------------------------------------------------------------------

Making Comparisons
Examples o f various kinds o f comparisons parents
related they make including: comparisons with
non-disabled children, siblings and other children
with disabilities.

Stories about Professionals and Services

Stories about Disability

Meeting Children’s Needs
Parents’ stories about dealing with professionals
in various service systems including: early
intervention, rehabilitation; school; behaviour
management; medical services; and supports for
independent living.

Larger Discourses
Examples o f parents’ historical and sociological
accounts about disability and being the parent o f a
child with disabilities.

Bureaucracv
Examples o f parents’ stories about dealing with
the bureaucracy surrounding services for people
with disabilities.

Diagnosis and Labelling
Examples o f parents’ stories which speak
specifically to the issue o f naming and identifying
specific kinds o f impairment.
Non Pathological Views
Examples o f statements which represent evolving
definitions o f disability as being a feature o f social
discourse and barriers

Table 3 - Summary o f Categories and Themes
Stories about Other People’s Assumptions
One theme that emerged in the focus groups included parents’ stories about other people’s
evaluations o f themselves and their children. This category includes parents’ accounts o f how
medical professionals, as well as the general public, tend to create negative evaluations o f their
children’s conditions. This theme comprises statements which I have called “horrible pictures.”

66
The term “horrible pictures” is derived from one o f the parent’s stories, and seems to capture the
overall tone o f these stories. Parents also related stories about how they are labelled or
essentialized. Essentialization refers to culturally determined “dominant specifications for being”
(White, 1990; p.SO), or to how others have attempted to define the role o f being the parent o f a
child with disabilities based on taken-for-granted assumptions. Thus, “Horrible Pictures” and
“Essentializing Stories” are the two themes about other people’s assumptions.
Horrible Pictures
Parents talked about receiving information, usually from medical professionals, about the
initial prognosis o f their child’s impairment. Many o f their examples were negative. One example
follows:
I had a pediatrician say to me once oh!, you know, - she painted the most terrible
picture. I left; I cried; I was so depressed. She said “oh, they just get so much
harder to look after when they reach 12 and they are Just so diflBcult.” I mean, she
just went on and on and I left there thinking —good God!, thanks for all the
encouragement.
Another parent’s account o f receiving a negative prognosis discussed the issue o f being given the
option to institutionalize her child:
In the beginning, we were given the option to institutionalize her. I don't know if
that ever crossed our mind - I mean, it was just one o f the things that they laid out
there. Even now you think back and you think, my God! What if we had done
that? Because they had painted such a horrible picture, that she would lie there
like a lump for the rest o f her days and she's no way near that. She has progressed,
you know, way beyond what they ever predicted.

67
In the first example, the parent suggested that some kind o f encouragement would have been
more helpful. In the second example, the parent related that her child’s current capabilities
contradicted the professional’s initial assessment. Another parent in the group added that it was
probably because her child was not institutionalized that she had progressed . Neither o f the
children, in these examples, has reached adolescence yet. With that in mind, the parents related
their perception that some professionals in the medical system “had a lot to leam” about some o f
the realities o f living with disabilities. An aside to the second statement is that there are currently
no institutions open in the province o f British Columbia, so that even if she had wanted to
institutionalize her child, this option would have not been available.
The parent in the second example provided the following evaluation o f the medical view
o f disability:
My first introduction to a professional is the geneticist who tells you o f your child's
disability and nine times out o f ten, given the two minutes alone with that person,
you would probably kill them because they have never been given any people
skills. They deal with genetics, numbers; they are scientists and they can't talk to
you - they come right out and tell you whatever and you don't hear anything they
say past your child is diagnosed with this... and that's it so then you leave.
While killing the geneticist is a rather violent metaphor, this parent’s statement questions the
effect of the scientific approach to understanding disability. She would have preferred a more
compassionate and communicative approach to finding out about her child’s disability. She
doesn’t want to hear just “this is the condition,” and to be left on her own to deal with the
implications of her child’s disabilities. Other examples about receiving information about a
diagnosis, suggested that finding out about a child’s disability often involved avoidance on the

68
part o f medical practitioners. Parents reported that when they suspected something was wrong,
they were told not to worry. In one case, a parent related that the attending obstetrician left on a
skiing holidaywith the message that he was having the infant looked at for muscle tone problems.
She was informed the next day her child had been diagnosed with Down Syndrome.
In an example o f a situation involving the diagnoses o f an acquired disability, a parent
related the following evaluation which is her interpretation o f medical professionals’ general
attitudes to naming and diagnosing disabling conditions;
A lot o f them... they do not recognize that. They also forget to take the caring
part... the caring attitude part... “You know what, Mrs Smith I just really am not
sure what her problem is but w e do care about her” Now, that would have gone a
long way. But we often were not given any o f the definitions. ...What if we are
honest? We don’t know and, guess what - we care . Those are kinds o f things that
would be good to hear a little more often.
The view that people skills were a vital component in professional relationships was echoed in all
o f the parents’ statements in this study. Congruent with this, parents related they were often very
able to deal with ambiguity in attempting to understand their child’s disability and that a sense o f
optimism was far more helpful than having definitive answers about what their child could or
could not do. The picture these parents painted o f doctors having to tell parents about their
child’s disability was that medical professionals could be overly blunt in their diagnosis o f a
condition or, conversely, that they avoided the issue. Only two parents related that receiving
information about their child’s disability was not problematic. In both o f these cases the child was
not diagnosed at birth.
The medical model was not the only source o f horrible pictures for the parents o f children

69
with disabilities. Parents related that other people provided negative evaluations o f the situation
involving their children. For example:
But I have also had people say to me and I don’t know how they could do it (they
weren’t thinking I guess) but they’d say “oh my gosh! I don’t know how you do it,
I couldn’t handle having a child like that.” Well, excuse me! I f you had a child like
that you’d have to deal with it. I don’t know how vou’d deal with it!
This kind o f experience was common in parents’ stories, suggesting people tend to "horribilize"
the experience o f having a child with a disability. As Sobsey (1995) points out, this practise tends
not to support parents’ relationships with their children. In this mother’s case, it is clearly a source
of added frustration.
In similar examples o f how parents encountered other people’s interpretations o f their
children, parents were amused, perplexed or simply dismissed unwelcome comments. The parent
o f a child with marked physical differences related that she simply agreed with people’s intrusions
into her experience:
The other little boy, his top torso is bigger than the bottom torso so he looks
strange when you see him, so they notice right away that there’s something wrong
with him and they'll go, "My he's a big boy" and I'm thinking, “Y ou don't need to
know what's wrong with this fella” and I go, "Yeah he is, he eats lots." So you
kind o f joke about it to get around it, feeling that it's not really any o f their
business. Because they are just really being nosey - they're not over concerned
about your kid.
This story represents one example o f how other people’s interpretation o f disabling conditions are
an intrusion into the lives o f parents o f disabled children. People are nosey and not interested and.

70
I think, the parent implies the interest is morbid and not sympathetic. During the early years o f
their children's lives, a number o f parents related the experience o f what might be called the
subjugating gaze o f others. These stories reflect Woodill’s (1994) metaphor o f a person with a
disability as "other."
Another account o f other people’s general assumptions about being disabled is
represented in the following story told by the adoptive parent of a child diagnosed with epilepsy
and a brain injury. This example speaks to the prevalence o f people’s assumptions that to have a
child with a disability is a bad thing.
We had one person who unbelievably said, because she knew she was adopted,
“are you going to give her back?” I could not believe it! .... In the Human
Resources system they just were used to people changing their minds about
children.
The parent, in this example, is disturbed by the suggestion that there are people who do indeed
give their children back when there is an indication o f disability. She also related that it was
something she later had been informed happens frequently in adoptions where children were
subsequently found to have an impairment. This parent countered this larger negative narrative
about having a child with disabilities with the assertion that she and her husband were “in it for the
long haul. " Parents’ stories about how others viewed their children, in most cases, seemed to
suggest that these negative assessments actually strengthened their commitment to their children
rather than being a source o f stigma. In addition, parents felt supported when other people
showed a genuine interest in their children and themselves.
Essentializing Stories

Another way o f defining essentialization is as culturally prescribed ideas about the way

71
\

j

certain categories o f people are supposed to act . Parents told stories about the ways in which thqr

I

have been essentialized which include: how disabili^ should affect their lifestyle, parents as

j

advocates, being seen as unable to cope and being seen as a super parent.

I

How disability should affect lifestyle. One o f the parents recounted a story about an
encounter with a social worker when her daughter was still in pre-school and involved with early
intervention:

!

Something a social worker told me many years ago, this was when I was still new
at CDC and he was actually the best social worker I ever came across (I still have
some educating to do with him). But he said to me, “Don't ever let Roberta’s
disability change your life style.” Now, I was crying. I left there crying, thinking,
“Okay, I can't ever let this happen.” I can just laugh myself right off the chair now
to think that how you could have a child with that severe a disability and not have
it affect your lifestyle. It's not even a realistic statement. And he was trying to be
nice and supportive but, you know, now I know that there is no way.
The parent’s account o f the experience suggests that, at first, she followed the professional’s
advice and that this was troubling. Her lived experience contradicted his advice as well as the
assumptions behind it. Additional examples fi*om parents’ stories about lifestyle issues suggested
that their children’s disability had often far-reaching effects:
Peter: Everything you do, the house you buy, the car you drive
Mary: You look at the school.
Peter: Where you go on vacation
Debbie: You can't live in certain areas because they have hills.
Peter: Or mud

72
These examples speak to how professional service systems, by working in isolation, can
fail to acknowledge that there are many practical realities associated with living with and
accommodating differences. For the parents o f children in wheelchairs, in particular,
accommodation and access to taken-for-granted aspects o f daily living were described as
extremely difficult. One couple related that just going on vacation required a tremendous amount
o f planning and co-ordination, including the need to know what stops they could make, where
there were wheelchair accessible washrooms and what kinds o f other tourism facilities could be
similarly accessed. Their stories strongly suggested that they didn’t “just do” anything and that
encounters with physical barriers were often physically and emotionally draining. In this respect,
the admonition to not let a disability affect lifestyle seems somewhat absurd. These parents
evaluated his statement as “totally unrealistic." Given parents’ descriptions o f the effect o f
disability on lifestyle, the advice is unrealistic and suggests something more than being
misinformed on issues o f disability. There seems to be a tacit message in the social worker’s
statement that disabilities are better accommodated within society than is actually the case.
Parents as advocates. Another version o f an essentializing story that parents presented had
to do with how they were perceived as parent advocates:
I think that sometimes working with the other professionals there are
assumptions

I guess the angry part that I had was that the professionals put up

the barriers and you are the one constantly knocking down the walls.. I think that
the labelling you get along with your child, the minute you open your mouth, you
may as well pin the label on yourself as well because you are an advocate for your
child and lots o f services.
In contrast to the previous example, this essentialization represents a double bind for parents. On

73
the one hand, they are told to not let their children’s disabilities aSect their lifestyles (which
implies that they will need certain kinds o f supports and services). On the other hand, if they make
too many requests o f service systems, they risk being labelled. Parents reported that those labels
included “ being seen as trouble,” “being in denial” and, in one extreme example, as “psychotic.”
There is a suggestion o f a kind o f control by certain professionals who de-legitimize the concerns
o f parents by discrediting their intentions.
O f course, parents mentioned that this is not the case in all instances. One parent related
that there were professionals who accepted the fact that their job was to be questioned by parents
and another acknowledged that professionals were willing to listen to their concerns. Nonetheless,
parents related that they continued to encounter opposition and inaction. One parent saw this as
being tied to issues o f money:
My experience has been people have asked us, “well what do you want?” We have
told them over and over what we want and still we don’t have it. We have some o f
it —they hear it —they ask, but it just doesn’t happen. Why? I can only guess. But
I figure most o f it’s got to do with money.
This suggests that the relationship parents have to the larger system is similar to other
marginalised individuals who have attempted to articulate the need for social and institutional
change. One parent described the issue o f getting services as a matter o f “constant screaming
and yelling” in order to get anything done. Another parent related that the disturbing part o f being
seen as "trouble" was that government service providers seemed, to her, to be withholding
information and that she, as a taxpayer, was paying their salary. In her own words:
It is almost like they are in fear with their jobs, yet their job is to support us. We
are hiring them. My tax-paying dollars, you better believe, have them on the

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payroll.
Parents, in a number o f cases, described an atmosphere o f frustration and fear in relation
to their attempts at service advocacy. They noted, as well, that there are many parents who have
simply given up in the face o f this frustration. Their stories suggested that they saw aspects o f the
bureaucracy which continue to be paternalistic and reactionary. As an example, one o f the fathers
related that he had to watch what he said to certain individuals for fear o f having services cut off.
Being seen as unable to cope. Another version o f an essentializing story about parents o f
children with disabilities spoke o f being seen as unable to cope:
So sometimes you are afraid to say that you do need help too. We've heard some
o f the mothers say that too - if I say that I can't cope they will take my kid away.
I'm not asking them to take my kid away. I'm asking for a service that I need or
something like that.... The social services, on the one hand, is there to help you
but on the other hand, it's the apprehension thing. That never goes out of your
mind because you also know well, gee, my kid cries when I give them physio - the
neighbours going to call them. And that's happened to a couple o f people. Or they
fell and they got bruised because they don't walk as well. There's always people
looking at you even more closely because o f the abuse thing.
The idea that the parent experiences greater scrutiny with regard to abuse suggests that
professionals may be working from a deficit model o f disability and how it affects parents. More
precisely, it is the over-generalization that having a child with a disability always leads to
debilitative levels o f stress which result in child abuse. The scrutiny is often compounded by
certain features o f impairment like not being able to walk well. In a similar example, the parent of
a child with behavioural difficulties reported that she was offered “counselling” when a rumour

75
surfaced that her child’s behaviour was the result o f physical and sexual abuse.
Super parents. Parents’ stories about the ways they are essentialized o r labelled suggest a
subjugating discourse with a somewhat limited set o f specifications for being. Being the parent o f
a child with disabilities, according to these dominant stories, means you can be a pluclqr survivor
o f a tragic event trying to live a “normal” life, a strident radical deeply in denial about the true
nature o f your child or a grief-stricken child abuser. These all seem to be based on tragic
constructions o f disability. A contrasting essentialization is about the parent who does everything.
One parent related the following:
The general population tells you - you're the parent, you're the advocate. You're
the only one that will advocate for your child so you’ve got the guilt on your
forehead so my God!, if I don't do it. You’re the continuity, because the
professionals change.
The problem is that the professionals may change but the discourse does not. While there is an
equal danger in stereotyping professionals, these stories and the examples provided within the
theme o f horrible pictures suggest that parents o f children with disabilities encounter stereotypical
views. The parents in this study are attempting to be the best parents they can but, to do so, they
necessarily confront the preconceived appraisals by others o f what being the parent o f a child with
disabilities entails. They are not saying it is easy, but it is often made more difficult by these kinds
o f narrowly defined essentializations.
Stories About Dealing with Difference
One o f the central concerns o f postmodern social theory is a concern for issues o f how the
construction o f normality becomes a tool for social control. Zimmerman and Dickerson (1996)
provide the following definition o f normal: “Follows cultural specifications. Fits into dominant

76
majority. Usually done without thinking. May or may not be appreciated, o r enjoyable, or helpful,
or anything else.” This category comprises parents’ statements which locate how normal is not
appreciated, enjoyable or useful. It also provides examples o f parents’ discussions about issues o f
coming to terms with and creating meaning around issues o f difference. Themes include affective
issues related to having a child with disabilities, deconstructions o f “normal” parenting and the
practise o f making comparisons.
Affective Issues
This theme included statements parents made about affective issues, specifically, grief and
guilt or self blame. This theme also included statements about the use o f humour as a coping
mechanism. Parents’ statements were particularly interesting in terms o f how they intersect with
the dominant discourse on normality, both as a source o f difBcult feelings, and in relation to how
there is a normalized way in which the parents o f children with disabilities are seen to experience
particular types o f emotional responses.
Revisiting chronic sorrow. Parents in this study made no mention that they experienced
anything other than feelings o f sadness upon the birth or diagnosis o f their child. The following
statement describes one parent’s initial grief following her daughter’s diagnosis:
I can remember thinking when Susan was first diagnosed, you could only look at
the calendar two days at a time. You couldn't look at a week. You couldn't look
at the future because you would just sit down and cry because you didn't know
what the future was going to be because you knew the child had a lot o f problems.
And so I couldn't even picture her at the age o f 15. Whereas you could picture a
brand new baby at the age o f 15 or going off to college, getting married and all
those kinds o f things that you couldn't do.

77
This statement does not challenge the concept o f chronic sorrow. The perceived source o f
sadness, in this case, is in the realization that the child would not lead a normal life. To be sure,
sadness, anger and shock were common emotional threads in parents’ stories about finding out
they had a child with disabilities. There was however, variation in parents’ reports about how they
dealt with these feelings. In one case, a parent reported that, with the assistance o f her mother,
she began almost immediately after her child’s diagnosis to become involved in an advocacy
movement. This contrasted with other parents’ statements which suggested they needed time to
work through difficult feelings.
Parents related that difficult feelings could resurface. The following story is interesting in
that it ties the experience o f “chronic grief’ to an encounter with a physical barrier.
Now I don't even let myself go there in my mind because... certain times I guess it
gets to you and for the chronic grief type o f thing it seems to level off, not level off
- 1 can't say that - but I think it sort o f isn't as often. You go along for months and
not think that your life is any different than anybody else's. You've gotten into your
routine, you're doing your thing, everything seems to be going smoothly and then
smuck some stupid little thing will fiustrate you like somebody blocks you in the
parking lot and you can't get your stroller out o f the car. I just about had a fit in
the parking lot o f the supermarket. You know, I wouldn't have this stroller if I
didn't have the child with a disability.
For me, this story suggests a different way of conceptualizing chronic sorrow as a feature o f
society’s lack o f accommodation. The parent’s story in this case relates some hesitancy around
whether or not she experiences grief on a regular basis. She experiences feelings o f sadness and
I frustration when she confronts an environmental barrier. This story speaks to the idea that chronic

I

78

I sorrow is not strictly a problem for the individual. Perhaps grief would be less o f a problem for
§ parents if accommodation was more universal. While there are other interpretations to this story,

I it would be interesting to explore this relationship further.
I

Parents discussed the issue o f acceptance in relation to issues o f coming to terms with

II difficult feelings. The literature review presented examples o f research and theoretical approaches
ÎI where acceptance is seen as an unrealistic expectation. Certainly, this was a cornerstone o f the
I original conception o f chronic sorrow. Some o f the parents’ stories challenged these assumptions.

1

I In discussing the issue of coming to terms with the grief of a child’s diagnosis, the following
I dialogue occurred in one o f the groups:
Susan: As Julie said, “Will this nightmare ever end?”
Peter: It ceases to be a nightmare. When you accept the fact that's just the way
i

they are. Everybody's different and you have to (and I don't think Julie’s anywhere

j

near there yet) - but when you accept the fact that that's the way they are and when

j

you adapt your lifestyle to fit... Either you adapt your lifestyle or you put your kid

i

i
I

in respite all the time. Those are the two options and for us, that’s not an option.
Mary: People with disabilities have said that too - they don't grieve over that kind
o f thing.

i

Susan; She's never walked and then lost it

that's their life.

This passage reflects a concern that difficult feelings or “the nightmare” have particular kinds o f
consequences for both parents and children. Peter’s story describes a kind o f matter-of-fact
acceptance and ties it to emotional adaptation. He also makes a relative statement about
abnormality - “everybody’s different." Mary’s comment ties this to the discourse on grief of
people with disabilities. This comment is interesting. It is an example which brings up the issue o f

79
how people with disabilities have deconstructed assumptions by others about their lives. This
interchange suggests the possibility that these parents have entered into a similar kind o f dialogue.
It is significant to note that, in the group where this discussion occurred, there were two
parents o f younger children. The mother o f the youngest child commented, after listening to a
related story fi-om the parent o f an older child, that she “wanted to get there some day.” By
“there,” she referred to a similar kind o f acceptance o f her child and the ability to look at her
situation difierently. In another group, the parent o f an older child offered the following
prescription for making sense o f having a child with disabilities:
You have to have this sense o f optimism. You always have to keep saying you are
doing your best and it’s going to get better maybe not tomorrow, maybe not next
year. So there’s that sense o f optimism which is probably why I first spoke about
positive things that w e experienced rather than negative. Because, you know, I
think there is that sense o f optimism. Otherwise we would have faltered.
This passage reflects the possibility o f a different view o f coming to terms with disability, based
on hope rather than hopelessness and the disease metaphor implicit in the idea o f chronic sorrow.
This parent’s story suggests that the “cure” for chronic sorrow may well be the encouragement o f
“chronic” optimism. There is a certain sadness in the notion that many people do not see this as a
viable possibility. The previous thematic category documented that the tragic view o f disability
persists. Parents in this study demonstrate, to a great extent, attempts to redefine a different kind
o f story. It is one where feelings o f sadness are very real but where they occur within a particular
social context and where there are useful alternatives to feeling sad all the time.
Coping with feelings o f guilt and self blame. Parents related that, in addition to feelings o f
sadness, guilt played a part in coming to terms with the situation o f having a child with disabilities.

80
As an affective experience, guilt can be seen as an externalized problem which is supported by a
number o f dominant narratives. This sub-theme includes statements which link guilt to social
concerns for pre-natal care, effective parental discipline, and the encouragement o f child
development. Guilt was discussed in all three o f the interviews. These examples suggest that the
narrative therapy approach to conceptualizing problems might be useful in dealing with parents’
feelings o f guilt and self blame.
Pre-natal care and guilt. Parents made a number o f statements related to the experience o f
guilt or self blame. One o f the parents shared the following account o f her feelings o f self blame:
One thing every parent o f a child with disabilities experiences this guilt thing, that
you go through at some point, when you say “what did I do wrong?” You know it
must have been something .. Nobody ever told us it could have... still I was always
wracking my brain about what I could have done. Maybe this or maybe that...
something like that. You go through this guilt thing. You look at this child and it’s
not perfect and somehow its my fault. So that's a big hurdle to get over.
This statement was a typical example o f a statement made by the parent o f a child with disabilities
about their own feelings o f guilt. It is not a deconstructive statement. It generalizes the issue o f
guilt to “every parent o f a child with disabilities.”
Mothers’ statements about guilt were generally tied the issue to pre-natal concerns.
Another mother responded to the above statement:
Gee, I thought I was the only one who felt that way. I used to wrack my brain
thinking my God!, did I take an aspirin at a certain stage in my pregnancy or
something ... what happened here. Because I knew I didn’t drink. I didn’t drink
coffee. I didn’t smoke. So I thought I took all the precautions. But you are looking

81
for reasons.
This statement identifies common health concerns for expectant mothers. In this case however,
the mother is the parent o f a child with a hereditary genetic condition so that her behaviour during
her pregnancy had no bearing on her child’s differences. In another focus group, the mother o f a
child with a genetic condition was eight months pregnant and expecting her second child at the
time o f the interview. The following dialogue extends the discussion on the relationship o f pre­
natal care and guilt.
Mary; We have no other child so I would like to have another child to feel okay
about me. When I have a child with a disability people look at me like “there's
something wrong with her.”
June. That label. N o wonder, there’s something wrong.
Mary: No, I didn't do drugs and no I didn't drink, "but didn’t you take folic acid?"
June: Even when it's a genetic disorder, which is a total accident, you still want to
prove something to yourself - that you could do it again.
Mary: I was ready a month later. Boy!, I'm going to get pregnant right away.
All three of these statements represent a dialogue about feeling guilty about having given birth to
a child with disabilities. None o f these mothers provided examples o f how they got over the
hurdle o f feeling guilty except in the third example where the mother was attempting to counter
her feelings of guilt by having another child. The issue is framed from the perspective o f having to
prove herself.
It is also important to note that, in the third example, the parent perceived others were
evaluating her for her behaviour during pregnancy. (She did, in fact, take folic acid during her
pregnancy). All four o f the parents who spoke in these examples reported that they were healthy

82
during pregnancy, yet the belief that they were responsible for their child’s impairment seemed to
persist.
These stories suggest that certain perceptions o f the information about pre-natal health,
&om the perspective o f mothers o f children with congenital impairments, might be characterized
as a subjugating discourse. I offer this interpretation tentatively since there is little doubt that the
use o f alcohol and drugs during pregnancy is a known cause o f physical and mental impairment. I
am not suggesting that expectant mothers be encouraged to forego good pre-natal care. At the
same time, the cultural edict to produce “perfect children” is evident in people’s assumptions and
this creates a subjugation that mothers o f children with disabilites may feel more intensely. What
the first parent described as a hurdle, more recently, has become an even bigger hurdle for the
parents o f children with disabilities because there is the misperception that all congenital
conditions of impairment can be prevented through either pre-natal testing or by making healthy
choices during pregnancy. Even in the case o f alcohol-related impairments, prevention involves
looking at more than just the indivdual responsibility o f pregnant women but can also include
looking at the larger context o f a society where alcohol is the second largest industry next to the
production of weapons. As means o f overcoming guilt, these parents’ discussions suggest that
deconstuction might be a useful therapeutic tool. Advising women to have a healthy pregnancy is
not the problem. It is the cultural practise o f "blaming the mother" because she is perceived to
have "failed" that is subjugating.
Guilt and behaviour management. Parents told other stories about feeling guilty related to
behavioural issues. In one case, the adoptive mother o f a child with an acquired disability related
the following:
You know, even for us, and we adopted Karen and she was perfectly normal at

83
birth. We didn’t have the reason for guilt initially. When she turned out hyperactive
and they wanted to put her on Ritalin, they looked at Dave and I and said “You
know there’s one thing missing in your life - you don’t have any guilt.” She’s
adopted; I don’t have any reason to feel guilty... but eventually they made me feel
guilty. (Laughter) You know, we actually assumed the guilt. She started perfectly
normal and then it’s - “What could we have done”? Then you want to take your
normal kids and hold them up and say “See!, we did it right also”... Like what did
you do to this child? That was like you are already dealing with the grief that this
kid is not going to be the way you had intended this child to be and then somebody
comes along and says, “Obviously you are doing something wrong. ” I mean it’s
just devastating... I think I mentioned one o f our school district psychologists and
he wrote a very formal report after doing an in depth study on Karen and the
conclusion o f his report was - it was a power struggle between mother and
daughter. And this caused encoporesis which is soiling of the pants. She soiled
every day for 5 years. That was one o f the symptoms that we battled and that is a
power struggle between m other and daughter.
Earlier descriptions o f Karen’s disabilities provided information that she does have a significant
neurological impairment which is apparent through her behaviour (mood swings, difficulty with
school work, etc). The parent, in this case, tied guilt to a particular set o f assumptions about the
relationship o f parenting skills and a child’s behaviour. The attempt to construct the reality o f her
child’s behaviour is “devastating” and is informed, again, by an assumption about why certain
kinds of behaviour occur. In her case, the assumption is that she has engaged in a power struggle
with her daughter.

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Another parent o f a child diagnosed with ADHD related the following story about her
involvement with a local agency;
Jeanette: The only grief I ever had with the [local agen^r] was that everybody
keeps pushing parenting courses at you. If your kid’s acting this way, take a
parenting course. I've taken them all - the kid figures the stuff out before I do. All
they've succeeded in doing is making me feel like an awful parent.
Fiona: Like maybe you're doing something wrong.
Jeanette: Yeah, if that kid acts this way, you're doing something wrong. Could it
just be, you know, that my kid acts this way.
This story represents a similar set o f issues to the first example and was echoed in a number o f the
parents’ statements about difficulties with children’s behaviour. Parents provided examples o f
behaviour which clearly represented practical problems: screaming, temper tantrums, and
aggressive behaviour towards others. Admonitions about how to discipline firom both
professionals and friends or family contributed to guilty feelings. For example:
Carol: It is not because they meant any harm by some o f their advice. They just
didn’t know.
Helen: We always used to get - Well, if you just give her a good lickin’
Carol: She’s spoiled rotten
Mary: See you guys are all helping me because we have kind o f been through that
and I think hmm, you know - is that legit.
A parent o f an older child brought up the point that understanding their child’s difBcult
behaviour without feeling guilty involved coming to a form o f acceptance that there were no
definitive answers for changing behaviours.

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Because they even admitted that they are not sure in this field o f behavioral
management or whatever it is but they don’t know all the answers. There’s always
new stuff coming out and, as somebody said, everybody’s different so just because
the prescription is for this person, it is not the same for that. You can’t box people
up and I guess that’s avoidance o f putting labels on. It kind o f helps you
generalize the condition but it’s not the same for everybody.
This parent’s retrospective analysis o f behaviourial prescriptions suggests that a reasonable and
pragmatic approach to dealing with problem behaviours is preferable. In other examples, parents
related that this was often not the case and the belief in definitive solutions often led to feeling
guilty for not having done the right thing, the right way at the right time. In other words parents
were “made to feel guilty.” From a constructivist perspective, the dominant story is that children’s
difficult behaviour is the result o f a failure o f parents. There is an added level o f difficulty in that
much o f the children’s behaviour is tied to a feature o f their impairment. Children behave
differently because they have specific and often idiosyncratic neurological differences.
Guilt and developmental concerns. In addition to discussing behaviour management
issues, parents related a number o f concerns about their children meeting developmental
milestones. As another example o f how parents develop feelings o f guilt, one o f the parents
expressed guilt over the issue o f when to toilet train her daughter.
Sandra: ...but part o f me, like Debbie was saying, I have to give her the most I can
and feel comfortable with it and if she can be potty trained and that's a step
forward for her, then I have to have her potty trained, but how do I know? When
is the little light going to go on, or this whole thing that shows when she's ready,
like that it says in the normal kids’ books, like it says that they show signs that they

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are ready.
Debbie: That’s your problem - you’re reading those bloody books!
From Debbie’s perspective, the “bloody books” are the problem or more precisely it is the
dominant story on developmental milestones like toilet training. To be sure, the mother o f a child
with learning disabilities in another group related that she felt that her son was “behind” because
he wasn’t toilet trained until he was three. One parent suggested that being toilet trained is a
“fetish for professionals.” It is a fetish o f the culture to standardize stages and that fetish can lead
to feelings o f guilt. There is a wide range o f ages when children adopt particular learned
behaviours, but the assumption about the right age to toilet train appears to be somewhere around
two. For parents o f children with disabilities, it becomes another layer o f discrimination. To
emphasize the point, one o f the parents related this story about taking her non-disabled son to
pre-school:
Regular kids in pre-school have to be trained. In other cultures they’re not. My
son was 3 when he entered pre-school and I said to her is it okay if I send him in a
diaper, he's more or less potty trained but rather than have an accident.... She goes,
“Well, I don't know, we've never had one.” And I turned to my husband and said
“oh my god!, w e’re the first parent who took a kid to pre-school when he’s still in
a diaper”(Laughter)

and then you have a kid with a disability and its like, yeah,

you just got kicked twice.
Parents’ stories about toilet training and remaining in diapers emphasize that
developmental issues are often problematic for parents o f children with disabilities. One o f the
ways they deal with this kind o f subtle subjugation is to question the assumptions behind i t . The
“bloody books” is a metaphor for the overly generalized view o f developmental psychology. This

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is similar to the overly generalized view o f appropriate behaviour.
Humour. Parents related that humour was often an important way o f coping with and
making sense o f their situations. The discussion about toilet training, in the previous example,
included a great deal o f laughter. In all three groups, parents shared humourous stories. That
parents laugh at their situations, suggests an antidote to the tragic conception o f disability. The
following statement presents one parent’s analysis o f humour:
I think humour is very important. We use a lot o f humour at our house. It's a little
sick sometimes but it's gotten us through a lot o f times when it was either laugh or
cry and you just can't cry any more so you know you joke about it and you deal
with it and you move on because you can't make any change.
Humour clearly can be seen to be a matter o f perspective. The spouse o f the parent in the
preceding example shared that (s)he had joked with his/her daughter, who is in a wheelchair,
about walking outside to feed the dog. It is not difficult to imagine people being offended by this
kind o f statement particularly if they have adopted a tragic view of disability. In this respect, it
would be seen as “sick.” From the perspective o f these parents, it is quite normal and helpful.
Parents’ statements about humour suggest that it need not be a subject with which to be
overly cautious. The following exchange describes parents’ first experience in joining the support
group.
June: I think people are sometimes surprised when they first come to the group
and I don't know if Mary can speak to this but people here will always hear Parent
Support Group. We don't spend a lot o f time weeping and whining. I mean, yeah,
there is a little bit o f frustration every now and then but really our desire is to share
information.

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Mary: I was looking for weeping and whining.
(Laughter)
Debbie: So was I and there was none - not even five minutes. I thought we were
supposed to have a glass o f wine, all break down and get this out and nothing.
They made rude comments and smart remarks.
(Laughter)
Mary: I thought, “Who are these people?”
Karen: But you kept coming. You persevered.
Humour, from a deconstructivist perspective, involves laughing at assumptions about what is
supposed to be the correct response to a given situation. This dialogue fits this definition. Instead
o f weeping and whining, the parents o f younger children not only received useful information, but
also had the chance to laugh. Certainly, for individuals steeped in the pathological view o f
disability, the laughter is difficult to appreciate.
Assessments o f ‘TNTormal” Parenting
Parents’ stories about being a parent also challenged assumptions about parenting in
general. The example o f toilet training in the previous theme is one example. The following story
is another:

That's what you do with your other kids - you sort o f ignore them. .. You have to
say too, okay if you’re tired and you want to sleep in on Saturday morning, so
what. I taught my kids a VCR and TV - there's the button, go to it, because I'm
not getting up in the morning

You want to watch a show And I'm lucky that

she can do that......
While the effect o f too much televison is also the subject o f a critical debate, this statement is a

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positive example o f a parent not succumbing to the discourse o f trying to be a perfect parent.
Parenting, whether a child is disabled or not, is stressful and it is unrealistic to expect that the
parents o f children with disabilities should be held up to a higher standard.
The idea that parents o f children who are different deconstruct so-called normal parenting
is intriguing. To be sure, around issues o f discipline and behaviour management, parents
constructed a different set o f rules for their children with disabilities because they understood
behaviour in terms o f the child’s impairment and were better able to identify assumptions about
“accepted’ child rearing practises. There was also a suggestion in many o f their statements that
this had also softened their attachment to more traditional forms o f discipline with their children
without disabilities. The process o f stepping outside what is considered normal and seeing how it
is socially constructed is a central tenant o f postmodern theory. Parents’ evaluations o f general
principles o f parenting suggest that, in having children with significant differences, they tended to
gain new perceptions and meanings about what it means to be a parent. One parent referred to the
process as having the opportunity to leam things about herself and others that she would not have
had if she was not the parent o f a child with disabilities.
Making Comparisons.
The practise o f making comparisons was discussed in all three o f the focus groups.
Parents related stories about comparisons o f their children with disabilities with normal children,
including siblings. Parents also talked about comparisons with other children with disabilities.
Their stories provided examples where comparisons were not useful as well as examples o f where
making comparisons had a beneficial effect.
The first example o f a statement made by a parent about the practise o f comparing
represents a personal declaration about the problem o f making comparisons. In this case, the

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parent is the parent o f a young child:
I won't do that. I will not do that! You know, so what! This is what I have. I
don’t care. I don't want to compare. I have stopped going on the Internet because
all I would do was compare - forget it, I don't want to do that anymore. I don’t
want to compare.
This statement was very emphatic. Making comparisons is a problem for her. She wants to stop
comparing. She says “this is what I have.” This statement suggests a view o f making comparisons
which is congruent with the constructivist process o f extemalization. The problem is not, in this
case, the child. It is the practise o f making comparisons between her child and other children, both
disabled and not.
This passage is an excellent introduction to the theme o f comparisons. This theme
encompasses two sub-themes: comparisons o f children with disabilities to "normal" children and
comparisons with other children with disabilties. In this section, and in keeping with the use the
language o f narrative therapy, I refer to the problem o f comparisons. Parents’ ways o f talking
about comparisons with normal children suggest a congruence with the idea from narrative
therapy that people have relationships to problems rather than problems being within people. This
is not meant to deny that there are other possible interpretations o f parents’ statements about
comparisons (e.g., cognitive behavioral therapies; Nixon & Singer, 1993). Instead, I present this
as a potential example o f how comparisons might fit within a narrative therapy framework.
Comparisons o f children with disabilities to normal children. One parent related her
perception o f the problem o f comparisons which described them as inescapable or constant:
My niece has a daughter who was bom 2 days before mine so they are exactly the
same. We get together in the summer and her daughter is running and playing and

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going to school and she's Miss Lady with her hair and everything and my daughter
was still crawling and lying on the floor, so it's a constant reminder.
This passage constructs the problem o f comparing her niece’s daughter to her own as one o f
being a "constant reminder." This is an undeconstructed view which defines a particular
relationship to the problem o f comparisons. They are toublesome.
Another parent related the following example o f coming to terms with the problem o f
comparisons through a process o f refi'aming his perceptions o f his daughter. From a narrative
therapy perspective, this process can be described as changing his relationship to the problem of
comparisons.
It still took a while to get over that, especially with my niece being 2 months and a
day difference. It is bad enough when you have an older child who hasn’t been
through the same stuff but they are not side by side at the same age and it takes a
w hile

You come to realize that Roberta is different but that's not all bad. We

have met people we would not have met otherwise. We know that, although she
has a disability, that her disability has led to some good things. We went to session
at the school here a couple o f weeks ago MAPS^ and one thing that I mentioned,
that the [fundraising event] in this city is a direct result o f Roberta’s disability.
There's been $100,000.00 raised from the [local agency] and it would never have
been raised if it weren't for Roberta’s disability.
In this case, the parent relates that he has come to see that there are benefits to having a child with
disabilities. There is a difficulty when a child is close to the same age as another child the same

~ A MAPS session is an instrumental planning tool used in special education to facilitate
I the development of social relationships between disabled and non-disabled individuals.

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age but, in time, the parent changes his relationship to the problem o f comparisons. This story
also elaborates the issue o f how more positive appraisals from the community contribute to a
lessening o f the need to compare children with disabilities with "normal’ children. This parent’s
description o f the process suggests it helped him clarify and reframe his perceptions o f his
daughter in more positive and relative terms.
One parent related an example o f a comparison o f a child with disabilities to his/her non­
disabled sibling. This example suggests that comparisons, in some cases, can lead to a more
positive evaluation o f a child with disabilities.
And all of a sudden through adolescence and there’s all kind o f imbalance in our
normal child. I think we were spared from some o f that so far. And with Nancy
we are seeing some o f those same things and thinking that maybe Sally wasn’t so
bad. Maybe a normal kid can give us a lot more grief than you do.
These kind of statements were made in reference to the fears parents experienced around
adolescent children. Parents did not have to worry about their children with disabilities
experimenting with drugs or going through phases o f rebellion. In two cases, parents made
statements that they enjoyed the aspect o f being able to be involved with nurturing their children
with disabilities longer than their more typical children. These kinds o f stories fit within White’s
(1990) therapuetic framework of looking for unique outcomes - where problems (i.e. comparing)
are no longer problems. In the two parent support groups, these kinds of conversations appeared
to be a part o f the group’s existing dynamic. Parents of younger children would tell stories about
the issue of making comparisons and older parents would present examples o f unique or different
outcomes. This suggests that the therapeutic aspect o f parent support groups can be similar to
narrative approaches to counselling.

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Comparisons with other children with disabilities. Parents’ stories about making
comparisons o f their children with disabilities with other children with disabilities suggest issues
relevant to critical cross-disability perspectives. The following story brings up the issue o f parents’
comparisons o f their children with other children with disabilities:
The first time I went to the [local agency], there was another family there and the
family has tw o children with severe disabilities. And one o f the days when I
thought I couldn't do anymore I just thought, I have one, she has two, I have one
she has tw o - 1 can do this, I can do this. Then years later, I found out that I have
a girlfriend, who I've known my whole life, who has a son the same age as Keith,
14, and he has some minor learning disabilities and stuff and she would just say
"my kids only got minor learning disabilities, look at Debbie." I was using
somebody else to make myself feel better.
During her early experience o f coming to terms with her child’s disabilities, this parent used
comparisons positively as a cognitive coping strategy. She does, however, look at this strategy
fi*om both sides and question the usefulness o f comparing impairments hierarchically according to
severity or type. In the following example, a parent provides a similar analysis in her statement
about a fnend whose child has a learning disability:
My girlfriend has a child with a very minor disability but the fiustration in the
education system is just getting to her, and she always says to me, “And I know
you've got it worse, but my problem is important to me.” And I think, “yeah,
you're absolutely right. It doesn't matter what the disability is.”
One o f the critical definitions o f disability is that it is a feature o f society’s lack o f accommodation
for people with specific kinds o f differences or functional impairments. The parent, in this case.

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suggests that a percieved hierarchy o f severity tends to be particularly problematic for people with
so-called mild disabilities. The parents o f children with learning disabilities in other focus groups
shared these same concerns in stating that a huge hurdle for them was in trying to get people to
recognize that their children required accommodation for their impairments. In one o f the cases,
where a child was diagnosed with ADHD, the child had also been tested in the gifted range. Since
his hyperactivity was pronounced and problematic, several recommendations were made by
psychologists through Children’s Hospital, which the parent had varying degrees o f success in
meeting. H er major concern was that certain types o f disability appeared, to her, to be favoured
within service systems. These parents’ discussions suggest a subjugating and divisive discourse on
disability framed according to severity. The central issue in cross-disability perspectives is about
accommodation, regardless o f the type or severity o f impairment. There are different
accomodations for different impairments and, certainly, some impairments are more severe than
others but accomodation seems to be equally unavailable and difficult for people regardless o f
their specific impairment. It can be argued that this reality is masked by language practises which
create an evaluative hierarchy o f severity. From an advocacy perspective, this discussion needs to
be extended.
To conclude this theme, parents’ discussions about the problem o f comparisons include
the dimensions o f comparing their children to non-disabled children, children with other types o f
disabilities as well as children with the same type o f disability. These parents’ stories about
making comparisons show that comparing is something they do not take for granted.
Stories about Professionals and Services
A salient feature o f parents’ narratives had to do with their relationships with
professionals and professional service systems. In most cases professional supports are seen as

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essential and parents have developed positive relationships with the professionals in their lives. In
other instances, parents expressed considerable frustration at impersonal, bureaucratic and
treatment-oriented systems and the professionals t h ^ viewed as integral to them. Parents were
particularly critical in their assessment o f the medical model.
These parents made positive appraisals o f professional relationships when professionals
gave parents choices, when they demonstrated a genuine concern for their children and
themselves and when they were honest about what they knew and did not know. Negative
appraisals referred to being made to feel blamed, feeling left out o f their children’s lives and
decisions affecting them, receiving overly sympathetic or overly negative evaluations o f their
children and their lives and being prescribed specific treatment or intervention agendas that were
difficult to manage in the context o f their day to day experience.
The category o f stories about professionals and services comprises two themes. The first,
meeting the child’s needs, is a large theme which is divided into the various kinds o f interventions
with children. These include: early intervention and rehabilitation, education, behaviour
management, and medical treatment. The second theme comprises parents’ statements about
dealing with bureaucracy. Within both themes, there are a number o f issues relevant to critical
perspectives on disability. These issues include parent and professional power relationships, the
practical validity o f certain types o f interventions and consistency in the application o f service
principles.
Following a description o f parents’ stories, I also present some commentary. In presenting
stories about parents’ relationships with professionals, I have selected some negative examples.
My intent in selecting parents’ examples o f problems with professionals is not to cast helping
professionals as villains. It is, rather, to define and elaborate these relationships from a critical

96
perspective. To that end, the analysis offers some suggestions about why stories about parents
and professionals seem to revolve around adversarial themes.
Meeting the Child’s Needs
Parents o f children with disabilities dealt with a number o f systems providing specific
interventions for their children. In most cases, this required a great deal o f time and energy and
constituted one o f the key differences between themselves and the parents o f children without
disabilities. On the surface, many o f the parents’ statements might be construed as criticism,
particularly because they cannot be countered by those working in the various systems. The intent
of presenting these themes is not intended as a denigration o f particular professions; rather, it
demonstrates that certain narratives within those systems continue to be based on assumptions
about disability which create additional problems for parents and their children. In other words, it
is the stories and not the people that I am subjecting to critical scrutiny.
Earlv intervention and rehabilitation. Nearly all o f the parents in this study had or continue
to have relationships with early-intervention professionals involving various kinds o f therapeutic
or rehabilitation relationships, including, occupational therapy (OT), physiotherapy (PT), speech
pathology and infant development. The first example o f a parent’s statement about early
intervention describes the issue o f having a number o f professionals come into her child’s life.
Once you have a child with a disability, it's almost like its not your child, it belongs
to the system. Like, I already had a child and nobody came into my life. I had this
child, and within 3 months, I had probably visits from 4 different professions - the
health unit, child development centre, infant development on and on and on. You
know, everybody coming to pay you visits and not only at the Child Development

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Centre. You had speech therapy, physiotherapy, occupational therapy. I had never
had so many people in my life at one time and you felt like this child did not belong
to you.
This parent’s evaluation o f these services does not refer to the quality o f services but to quantity.
More importantly, it suggests that the degree to which there is intervention with a newborn
impacts the parent’s ability to develop a relationship with the child. “It belongs to the system.” To
be sure, parents related that most early intervention and rehabilitation professionals have the best
o f intentions in assisting parents o f young children with disabilities. Parents made several positive
statements about early intervention and the professionals who supported them during this period.
In one case, a parent was thankful that professionals “took over” during the difiBcult times o f
coming to terms with her child’s diagnosis. Parents’ stories about early intervention, however,
talked about the need to sort out appropriate balances between developing a sense o f acceptance
for their child and getting their child’s needs met. Parents’ stories described what seemed to be an
army o f professionals coming into their lives, immediately and quickly. The parent o f a two-year
old reported coming home from the hospital, with her daughter, and having to go to several
appointments right away:
Well so happens, we get back and I'm thinking go home and everything will be
normal (thinking in my head, it will be normal probably thinking she’ll be normal).
Get home and the first week we had, in five days, seven appointments. Well, it
would take me an hour and a half to bathe her, get myself ready and get there. I
did this all by myself because my husband wasn't home. So you realize quickly, she
is not normal.
I do not present this story to be interpreted as insensitivity on the part o f early intervention

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professionals. Parents also related that funding issues played a role in the extent to which various
therapies were available. One parent described the situation as “having 6.11 years to get
everything done.” My experience with early intervention professionals suggests t h ^ work under
this kind o f pressure plus the added pressure that the funding they get is never enough. However
this mother’s story suggests that one o f the results o f existing arrangements may be subjugating
for the parents of newborn children in particular.
In another example o f a discussion on early intervention, parents discussed issues related
to what I described in the literature review as the fixing narrative. The following statement
describes one parent’s assessment o f the rehabilitation discourse;
Everybody is in Roberta’s life are there to do good, speech, OT, PT. They want to
fix Roberta but Roberta isn't really broken. Roberta is just Roberta and you know,
yes, we can make her a little better, she might be able to do things a little better but
that's simply Roberta. And once we got to the point that that is Roberta and she
doesn't talk and she doesn't walk but that smile says everything.
This statement questions the assumptions that people with disabilities are deficient or “broken” as
a result o f their impairments. On a certain level, it challenges the professional discourse on
rehabilitation. This kind o f statement is perhaps provocative and contentious for rehabilitation
professionals who, undoubtedly, “are there to do good." These efforts are, nonetheless,
constructed by this parent as attempts to fix her child. The same parent related her perception o f a
trade-off between various kinds o f therapy and what she felt to be more important issues for her
daughter:
We've sort o f come to the understanding that speech, OT, PT - all that's on a
consultative basis. If it was not an integrated classroom, she would probably be in

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a segregated school getting services to meet all those needs and probably would be
developmentally further ahead but the trade-off is she goes to birthday parties, she
has friends come to the house. Everybody in that school knows her. It is quite a
small school. She is accepted, probably more than people would ever imagine and
our hope is that when she is finished school some o f those fiiendships will carry on
and would they have happened in the normal situation in a segregated school?
The further context to this statement is that the parent, during her child’s preschool years, had
worked very hard to get as much rehabilitation and therapy as possible. I do not think her use o f
the term fixing is intended as a denigration o f various therapies. I think it speaks more to a shift in
emphasis from one agenda (rehabilitation) to another (integration and inclusion).
In another instance a parent described his appraisal o f rehabilitation in the following way:
What is it that we’re trying to accomplish? On the one hand they'll all tell you you
have to have time for yourself and at the same time they are telling you if you don't
do this physio they are going to get contractions or you have to work on drool
control. Okay, when do we fit that in.
To me, these stories speak to the need o f finding balances and an understanding of
context. Therapy is important but it is only one element in a person’s life. From my experience in
special education, I know that it is often extremely difiBcult to co-ordinate things like drool
control or other forms o f therapy. In addition to this, there is the reality that the recipient o f
therapy is often not very interested in engaging in the practise, particularly in integrated settings
where, from their perspective, there are much more interesting activities.When children with
severe disabilities were segregated, it was easier to set a therapeutic agenda. In my experience
working in a hospital school program, therapy times were routined, sometimes bordering on

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regimental. Perhaps, the subjugation here lies within systemic structures where professionals are
working in isolation both in the settings where they work and in the disciplines in which they are
trained.
School. Parents’ statements about the school system reflected a range o f concerns,
including inclusion, appropriate educational supports and relationships with school personnel. The
issue that emerges in these statements is inconsistency. On the whole, parents related that school
could be a pleasant experience and a source o f support but that it could also be a source o f added
stress. Many o f the parents o f school-aged children said that teachers had spent considerable time
with their children. Parents felt that teachers and teaching assistants appreciated and knew their
children better than other types o f professionals. Their stories suggested however, that finding
appropriate educational supports for their children was often a "hit and miss proposition."
The following anecdote presents an example o f how inconsistency created a problem for a
parent and her children. This parent found that, within the same school district, approaches to the
accomodation o f children with disabilities varied a great deal fi’om school to school:
How I got around it in the school system was when I moved. We recently
purchased our own home at [neighbourhood]. And when I put my kids in [school],
I didn't bother telling them anything about them. I just said, "this is Sarah blah,
blah, blah. She’s in kindergarten and this is her brother." And I thought - I'm not
going to let them know that they have problems because they are going to
automatically pre-judge them, think that they can’t do as well or (be) behaviour
problems and they are going to ride them and that kind o f big deal. It kind o f
backfired on me because at [school] they had supports. I should have told them
ahead o f time.

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This parent related that her decision to not disclose her child’s disability was the result o f a
previous experience at a different school where she felt that her children were unnecessarily pre­
judged by school staff and where she was constantly called to pick one o f them up. In the school
district where this parent lived, inclusive education at neighbourhood schools is a district-wide
policy. According to her perception, the application o f the philosophy is not consistent.
One parent also related that within schools, people’s understanding and support o f
inclusive education varied a geat deal:
We found that we were the first to go into the school system with inclusion and
that was quite the shock to everybody you know. .. We are into our eighth year
and still there are people who have been in a relatively small school who still have
these assumptions about you and your child that I just find unbelievable. Don't you
talk in the coffee room? Haven't you heard how things are going?
Other parents’ stories about school suggested that positive experiences with their children
in school hinged on school staffs’ positive and proactive view o f disability. Some o f their stories
suggested that the more traditional and standardized the approach to teaching, the more difBcult
the situation could be for them. One o f the parents o f a child with learning disabilities related her
experience with a teacher who she perceived as unable to make a shift in her thinking about
suitable education for her son:
I don't think it (consultation and education about her son’s learning difficulties)
would have worked with his kindergarten teacher. Stuff like trace the 1 in five
different colours, 73 different times and then she couldn't understand why he was
bouncing all over the room, (my parentheses).
In other cases, parents identified problems with school that had to do with overly low

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expectations and the relegation o f teaching duties to teacher aides:
The worst thing is the professional, particularly the teacher, who doesn't have any
expectations. Cause you run into those. We had a teacher like that two years ago
who basically abdicated all responsibility for Roberta’s education to the aide.
These parents’ expectations for special education, whether it was in integrated settings or not,
suggested they still run into negative appraisals from some teachers about their children.
Parents who described positive experiences with the school indicated that they were
impressed by individuals who went out o f their way to provide extra support for their children. In
one case, a parent related that she felt professionals might be frustrated with their own overly high
expectations:
I think one o f the things that's got to be really frustrating for any o f the
professionals that work with our kids, though, is that we do, like you say, come to
some sort o f acceptance that you know that some things aren't going to happen.
We're all so really happy with the small little things and they can be really tiny little
things but it's progress and it's very hard for the professionals. I think they maybe
see themselves as failures. Especially if you are a teacher for one year or something
and she's got expectations of that child and that child doesn't meet them but the
kids leam this much but the teacher had this much. You know, it took me years to
come to that acceptance so how can a teacher or somebody?
The broader context to this statement reflects a concern for how education has come to be seen as
a system which does not necessarily value "little things.” This parent’s story also appears to
contradict a stereotype about parents o f severely disabled children as having unrealistic
expectations for their children. The parent in this particular case, defined acceptance as “being

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able to leam some things because” she believed "learning never stops.”
Parents’ positive evaluations o f the public education system typically referred to
developing active partnerships with school personnel based on open communication. Parents o f
school age children and parents o f adult children who had finished school all shared that they had
had at least one positive experience with their children’s teachers. Parents’ appraisals o f the
school system were generally more positive than their appraisals o f other service systems.
Behaviour management. Behaviour management issues were discussed by eight o f the
parents (six families) whose children were seen to have behavioural problems associated with their
disabilities. Parents expressed criticisms o f particular approaches to behaviour management and
discussed the idea o f professional certainty.
The following statement is a general challenge to assumptions o f certainty o f behavioural
interventions:
I think the problems are very much more complex. Maybe these problems always
really were more complex and there wasn’t the research that went into the roots o f
the problem. How is a professional person supposed to know everybody’s little
intricacies fi*om the little problem that might have set this child off, or what was it?
Behavioural problems are complex and are not remediated by a single solution or set o f
interventions. Individuals have intricacies and interact within a complex set o f environments with
different individuals. Parents related that they did, however, run into professionals’ attempts to
provide either quick fixes or essentialized explanations.
Parents saw some o f the quick fixes as ethically dubious. The parent o f a child diagnosed
with autism related that (s)he was instructed to pull her/his daughter’s hair whenever she started
to scream. Another parent pointed to what she termed:

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A take a pill mentality... It's like if they don't know what to do then t h ^ will tiy
this and see if this works and they have no idea if it's going to work or not anyway
so your kid is turned into a guinea pig.
In both these cases, the parents related that the interventions aggravated the behavior and had the
net effect of causing them greater levels o f stress, confusion and guilt. In the hair pulling example,
the child eventually started to pull her own hair out. One parent related that a different kind o f
problem arose because she perceived that professionals refused to believe that her reports about
her son’s behaviour were real because he was "so cute." Clearly, parents related a considerable
amount of frustration with issues around behaviour management.
In some parents’ perspectives, behavioural prescriptions seemed to be offered with little
consideration o f the consequences, not just for the child, but for the parent as well. Parents felt
that professionals who offered these prescriptions often seemed to do so without an appreciation
o f real-life context. The parent o f an older child who had behavioural difGculties when she was
younger related a retrospective analysis o f her experience in receiving behaviour management
advise:
Why don’t you take the number o f behaviour management plans they have in their
file box? I could be up there, (laughter) Some of them I’ve read; I was going
through some today and I actually laughed out loud at a couple o f them and I
thought. What!, they actually did this. I know I didn’t. I mean, I couldn’t follow
their advice on some o f these.
Parents appreciated advice on behaviour management when it was given with
understanding and a lack o f certainty. The parent in the preceding example was particularly
critical o f “gimmicky” or contrived interventions. Another parent related that she felt that

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behavioural advisors were often not holistic, suggesting that she felt behaviour problems were
looked at as pathologies or diseases with an implied “cure."
A parent o f a child with autism related that (s)he came to see behavioural problems as an
opportunity to leam something:
And o f course, we have to move forward and in moving forward you make some
errors or maybe errors in judgment or whatever. It is really not errors. It’s a trial, I
guess. Some o f it’s trials and other ones are errors. I think that we felt that we
always moved ahead. It has always moved ahead one more notch. Sometimes back
one step, moving ahead two but it was always a gradual moving ahead to
achieving a balance and so, and then it helped us at times when it was really
difficult to cope with certain situations. Some situations occur and you just don’t
know what to do. People are all looking at you. What are you going to do about
this? You know. So these were kind of like tools given to us and o f course it
wasn’t really appropriate in every case, but what do you do? You gotta try it out. I
think we found other ways to achieve that same result, you know, and we just had
to figure that out.
This parent’s approach to achieving a balance around issues o f behaviour management suggests a
questioning o f the certainty o f behaviour modification. This parent’s evaluation o f behaviour
management is not about finding a single solution based on behaviour modification principles.
Rather, it is about a slow evolution o f pragmatic trials o f learning from mistakes and achieving a
balance. That the parent hesitates in calling these interventions "trials" or "errors" is interesting as
it suggests being caught between two perspectives. Autism, from a more critical perspective, is
not a behaviour problem to manage; it is an impairment to accommodate.This parent’s statement

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about having “to figure it out” questions the long term efficacy and the underlying assumptions o f
certain types of behaviour management principles. It is also interesting to note that, again, the
gaze o f others plays a role in which interventions are chosen. Perhaps in people’s desire to help
parents with issues o f behaviour management, the issue o f the influence o f how others perceive
those behaviours is often missed. People do look at and judge the behaviour o f people with autism
but, really, whose problem is that? Deconstruction o f the parent’s relationship to the problem of
people’s subjugating gazes, in this case, might be an entirely appropriate and less stressfiil
intervention. Certainly, it is better than pulling the daughter’s hair.
Clearly, psychological knowledge cannot be stereotyped as a set o f rigid generalizations.
One parent did, however, share a story about a situation which suggested an encounter with a
professional who over-generalized a particular principle.
We had one experience in [provincial hospital] and a psychologist was asking us all
o f these hundreds o f questions... One o f the questions was, "Do you have pets in
the home" and we said, "Yes" and she said, "Is Kelly ever rough with the animals?"
I said, "Yes, sometimes she’s a bit rough," and on to the next question. Well, then
we get the formal report —"this child displays cruelty to animals." (Laughter) And
I remember saying, "This isn’t my daughter, she likes them so much. She hugs
them hard or she makes them dance." But it was interpreted by this gal... I just...
It was sort of funny ... it wasn’t going anywhere. But the thing was, that it was in
her file, so somebody, if this report was going to be passed onto somebody else or
somebody caring for this girl... You know, it would influence how she may be
perceived and even had problems with certain behaviours that were really extreme.
The really super extreme behaviours are really infrequent but, because there are

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reports somewhere, there have been certain people who haven’t felt comfortable
about caring for her in a day-program or-house-sitting with her for an evening
when her caregiver’s away, o r whatever. Because they see these violent aggressive
incidents which is so infrequent and usually provoked by some mismanagement.
That they can be explained away quite easily if you talk to me, but because it is in a
report then it’s there for anyone to interpret how they want.
The mother shared that this interview with the psychologist took place at the same time that there
was considerable media coverage o f research into the relationship between psychopathic
behaviour in childhood and cruelty to animals. Her story is an example o f the effect o f out-of­
context professional appraisals parents might encounter. Further to this, her example also reflects
a concern for what these kinds o f appraisals can mean in the construction o f the social identity o f
a child with disabilities. They can have serious consequences. The written word, particularly the
word written by a professional "teller o f truth", has authority. At best, in this case, uninformed
care-givers would keep the child away from animals. At worst, it is troubling to think the child
could be labeled as psychopathic.
Medical Interventions. Parents’ stories about their interactions with the medical
community were introduced in the section on horrible pictures. Parents made a number o f other
statements about doctors and other medical professionals which reflected different kinds o f
issues. Parents o f children whose impairments were not apparent at birth made statements about
the way some doctors minimized their concern about their child’s apparent differences or lack o f
ability. For example:
Well my first experience was not a good one because we had noticed with our
daughter that there was developmental delay. She was a second child and we were

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very suspicious at, say, 7 months old. She wasn’t sitting up like she should have
been and then by the time she was a year she wasn’t walking and I’d had her back
and forth to my family doctor and he said, “Oh well. Don’t be too concerned;
some kids are just lazy” and so fine.
This kind o f minimization was noted by other parents in similar situations. Professionals’
reluctance to identify a difference can be interpreted as a variation o f the negative evaluation o f
disability. It might reflect an implicit assumption by some professionals that naming an impairment
is something to be avoided unless absolutely necessary. In fairness to doctors, the communication
and pursuit o f a diagnosis means they may have to be the bearer o f bad news. Furthermore,
diagnosis, in some cases, is difficult, time-consuming and can be expensive. I do, however, think
that because traditional medical models emphasize the pathological and negative aspects o f
impairment, a part o f some doctor’s reluctance to name a condition o f impairment may be rooted
in these negative connotations.
In some cases, the reluctance to diagnose can lead to serious consequences. The following
parent describes an example o f such a situation;
Like, I struggled tremendously with the medical profession because it was mainly
medical people that we saw, although it was psychologists and psychotherapists
and it was psychiatrists as well as neurologists - everybody. Everybody said, “Oh,
she’s fine, keep her home, love her.” She wasn’t capable o f doing the things at age
10 that she was at age 5. When she was finally diagnosed and they finally put her
on medication - in her particular case it was epilepsy and at that point the epilepsy
had done irreparable brain damage and the medication was going to prevent more
from happening but not to repair what was already lost and I have to say my

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fhistrations with the medical profession were definitely there by a mile.
One o f the parents, in a different group, related similar fiiistrations with the medical system citing
both economics and politics as reasons why she felt there were problems. Clearly, current health
care funding is seen to be in crisis and parents’ criticisms should be seen in light o f a system under
strain. The above example, nonetheless, speaks to the idea that there is a tendency o f some
medical professionals to be dismissive o f parents’ concerns about impairment. The fact that the
end result o f the dismissiveness, in this case, was more brain damage leads to questions about the
narratives that inform how doctors deal with issues o f parents’ perceptions o f potential
impairment. A part o f this narrative probably relates to the fact that many parents’ fears prove to
be unfounded. On the other hand, perhaps if doctors were more aware o f the possibilities rather
than the limitations o f living with an impairment, it might mean they would be less reluctant to
pursue a diagnosis. Again, in fairness to doctors, I think there is also a tendency o f some parents
to miss the wider issues related to the diagnosis o f impairments and to blame doctors when their
expectations that doctors know everything are not met.
Another issue the parent discussed in relation to the medical profession had to do with
having his/her child being seen as an experiment:
And I mean, they just went like this (rubbing hands together) when they saw...
because she was so rare. Its like, “We’ve only ever had three cases o f this in
Canada but now we have one in Vancouver.” It was wonderful, right? ...Also, the
idea that you are an experiment, or they’re experimenting on your child, bothered
me a lot. These drugs are not proven in any way, shape or form, but we re going
to try them on your kid.You know that when it’s a tried and true drug they charge
you for it, right. So you know when your child is on experimental drugs .

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This parent related her perception that it was interesting that after the difficulty o f putting the
label on the child, the medical establishment then embraced the condition and looked at the child
as a chance to study the condition and to experiment with drug therapies. One the critiques o f the
medical model, from a critical perspective, is that it objectifies people with disabilities as human
anomalies for the purpose o f study. While there is a subjugating stereotype o f doctors as
disinterested clinicians or “pill pushers”, these kinds of stories suggest that, at least, issues o f
openness and respect are features o f the intersection o f parents’ and doctors’ narratives. The same
parent in this example related earlier that (s)he would have appreciated doctor’s honesty about
not knowing her/his child’s diagnosis if medical professionals shown more o f a “caring attitude.”
I should point out that I am not a medical professional and comment with caution on many
aspects o f the medical model and medical practise. To situate my analysis, I probably share many
o f these parents’ biases about doctors. In my professional experience, I have had similar
encounters with doctors. In one instance when I was working at a hospital for children with
multiple impairments, I was interrupted by a group o f paediatric interns and their instructor. The
instructor proceeded to lecture his students without asking me if he could interrupt what we were
doing and positioned his students directly between myself and the student. When he finished, he
left with no apology. One o f his students returned a moment later and offered an apology. I
would hope that most doctors were more like the student in this case and less like the teacher.
In defence o f professionals. In selecting statements to present in this section, I have
presented some o(parents’ negative evaluations o f professionals and professional service systems.
This was not intended as a denigration o f professionals who work with children and adults
labelled with disabilities. Undoubtably, many professionals in disability-related fields are in the
forefront o f advocating for the rights of individuals. My intent in presenting parents’ “horror

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stories” is to elaborate how more dynamic definitions o f disability create the need to critically
examine subjugating cultural practises. Some o f the parents spoke about the value o f developing
partnerships with professionals. They also spoke about challenging what I would call “expertness”
as opposed to expertise. These parents welcomed expertise and saw it as essential. Expertness
refers to the social distancing created when professionals claim or are seen to have definitive
answers and present those answers to parents in such a way that the parent perceives their own
interests to be inferior. Partnerships are based on equality and mutual respect not on imbalances o f
power.
Again, it has been my experience that many professionals understand this fiindamental
professional value. In understanding the parents’ point o f view, however, perhaps not enough
emphasis is put on viewing parents o f children with disabilities as members o f a socially
marginalized group. Historically, parents o f children labelled with disabilities have been oppressed
by many o f the same kind o f sympathetic and pathologizing assumptions as have individuals with
disabilities. Like other oppressed groups, a certain “in-your-face” attitude in their criticisms is to
be expected. Unfortunately, I think, professionals often get caught in the middle o f this larger
struggle and may be seen as the enemy regardless o f how they act with parents.
Another element in defence o f professionals is the influence o f the systems in which they
work. Services for people with disabilities are severely underfunded, often staffed with individuals
with little training in disability-related issues and often are provided in an atmosphere o f
ambivalence. In other words, professionals face their own version o f the culturally subjugating
discourse on disability. In many respects, it is understandable how professionals who work under
these conditions succumb to the temptation o f easy answers or to hiding behind the mantle o f
“expert.” In my own experience. I, too, have been frustrated. Usually, my frustration revolves

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around the addition o f one more bureaucratic requirement. With that in mind, the analysis
proceeds to the theme o f parents’ stories about bureaucracy.
Bureaucracy
In all of the interviews, parents related that dealing with certain kinds o f service systems
and professionals could be a source o f stress. They had little to say that was positive about
bureaucratic aspects o f the system. Parents told a number of stories about how they have received
the “run-around.” The following story is long but it was told with a particular clarity and humour.
I had a social worker one time who told me that I could no longer have my cheque
come to the house; it had to be deposited directly to my account. And she told me
that it had to be so. So fine, I signed the papers and everything and then I spoke
to another parent who said, “I’ve just been told that it can no longer be deposited
directly to my account; I have to have the cheque come to my house.” I said, “But
that's the way I wanted it.” I phoned her back - 1 said, “Disregard that; I want the
cheque just to come to my house

” You know, she phones me back and says,

"Now June, we can't have this. It is policy.” And I'm thinking, “No it's not.”
“You have two policies there and one is going that way and one is going that way
- I want to be on that.” ...You know. I'm trying to be light about it and everything.
This is in the middle o f my day when I'm not having a good day anyways. She just
keeps going on and on ‘til I'm so tired I go with my phone and I sit down at the
table and I'm saying, “listen to me, this is a simple thing. Don't make my life crazy.
All I want is the cheque to come to my house, okay.” And she goes, “But no” and
I'm going... And eventually I've got my head down on the table, and I'm going
“Don't make me crazy; listen to me. This is a simple thing. Do what I'm asking; call

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me back” and I hang up the phone. I can't believe this. Honest to God, she
phones me back after making me crazy for probably half an hour and says, "Oh
June, that's quite all right; you can still have the cheque come to your house.” I
phoned my husband and said, “Never! - 1 never want to deal with this woman
again.” (Comment from another parent: “She probably heard you were having a
good day and said let’s mess this up”).
Parents told a number o f these kinds o f stories, and for all three o f the groups, trouble
with professionals and service systems was included in their list o f priorized issues. Their
suggestions for dealing with bureaucracy, in some cases, bordered on the idea that the best thing
to do with it was to just eliminate it. Even in cases where parents had tried to cooperate with
bureaucrats, they still expressed the concern that they felt as if these professionals were hiding
something. In one case a parent related that he actually experienced fear in relation to particular
individuals working in the system.
The fact that the parents told so many o f these kinds o f stories, however, leads to
questions about why parents (or professionals or anybody) continually face these kinds o f stressful
experiences. While some parents told stories about positive experiences with the system, parents
also reported that they felt as if ministry personnel were hiding information and that they felt they
were perceived to be “trouble” if they asked too many questions or made too many requests.
Parents also felt that they had opened up their lives to the ministry for close scrutiny and that
there was little reciprocation. Taken as a whole, the stories parents told about negative
experiences with bureaucracy suggests the persistence o f power imbalances which cannot be
simply dismissed as paranoia. What parents described seems to represent a particular kind o f
ideology at work within these larger systems. These parents’ stories strongly suggest a need to

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know what that ideology represents. From the perspective o f these parents bureaucracy is a key
aspect o f Lenny’s (1993) “disabling society.”
Stories about Disability
This thematic category brings together parents’ stories about disability. This category
represents a collection o f parents’ stories which are specifically relevant to the critical definition o f
disability. This category includes the following three themes: Issues related to larger historical and
sociological discourses on disability and being different, parents’ stories about diagnosis and
labeling and parents’ stories which elaborate non-pathological views o f disability and being the
parent o f a child with disabilities. This category concludes a section discussing my observations on
what parents did not deconstruct.
Larger Discourses
Statements collected under this theme represent parents’ attempts to make sense o f the
issue o f disability from a historical and sociological perspective and relate to parents’
philosophical and ideological outlooks. They demonstrate that attention to the bigger picture
plays a key role in how they have made sense o f their situations.
Historical discourses. One o f the parents in the study presented the following capsulized
history on being different in society:
We went —like the generation o f older kids —the ones that are adults now. ..went
through a time o f transition as far as the experts in the field were concerned
because there really are sort o f two roles you know. You are either a normal
person being part o f the normal society or, if you didn’t fit there, then there was
institutions

there was still those two spots that people could be —either you are

in or you are out. And anybody else that should have been in that was out, kind o f

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walked the streets —that’s the street people. They were categorized. I think
people were already put in these slots. Nowadays, it is way different than the
institutions. These institutions, the traditional ones, are gone and so the thinking
has really changed a lot, especially among professionals. And I think that they are
a lot more sensitive to recognizing the differences in people with developmental
difficulties and I guess they put labels on people; I mean more labels have been
developed than were used at that time but I think they are avoiding even labeling
people now because everybody has potential and hopefully that’s the positive
approach that the professionals are using - that everybody has possibilities and
they should be encouraged to develop to the potential, whatever that potential is —
you don’t measure people according to somebody else but according to their own
individual potential. I think the philosophy has changed an awful lot.
This passage is presented in its entirety because it points out a number o f issues related to
meaning-making. This parent’s construction o f the evolution o f services for people with
disabilities is powerful in its conclusion that “everybody has possibilities.” That statement is a key
aspect o f the deconstructed view o f disability. That there appears to be a contradiction about
whether or not there are more labels being put on people is interesting. The latest version o f the
Diagnostical and Statistical Manual (DSM-IV) (1994) would suggest that labels have proliferated.
On the other hand, he is stating that he sees a more widespread critical evaluation o f labeling than
in the past where the essential reality implicit in the label was widely taken-for-granted.
Historically, the confusion about labels in his statement is entirely accurate. Current debate over
coming up with more and more diagnostic categories is indeed contentious and confusing. A
critical and somewhat facetious view has emerged which says anybody who wants to have a

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disability can have one because the DSM-IV categorizes everyone (Davis, 1997).
Another parent’s construction o f historical evolution o f services ties the issue o f inclusion
o f children with disabilities to the work o f parent advocates. In this story, parents are seen as the
chief agents o f social change.
All the progress in services for disabilities has all come from the family. It has not
come from the professionals because if families don’t push, it never changes. The
first time we heard him (Lou Brown^) speak was in Richmond and he gave a
capsulized history o f special education in the States which is probably very similar
to in Canada and how it started... Before World W ar 2, it really wasn't an issue
because there wasn't a big population o f people like that. The baby boom hit after
WW2. He went through the whole thing. Parents would come and say "I have a
child with Down syndrome. Can he come to school?” “No, we don't deal with that
go down the street.” And eventually this parent would say, "No," so they say, “We
will set up a special school” and eventually a parent comes through the door and
says “No, they go to regular school” - “okay, we set up a special classroom."
Eventually the parent comes through the door and says “No, we go to a regular
classroom.”
This parent’s spouse later pointed out that receiving this kind o f information played a key role in
helping them reframe perceptions about their daughter.
I really think it (acceptance) came with going to listen to Lou Brown the first time.
I had no concept - I didn't ever see her going to school. I mean she wasn't yet two

^ These parents related that Lou Brown is a frequent speaker at a provincial parentadvocacy conventions.

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and I'm already worried about school and down the road. And when I listened to
him... I knew she was going to school and this is what we were going to do and
this is what I expect and then I came back with all these expectations and you
could see these therapists going - "Who told her this stuffi?"
Parents also related that a good deal o f their understanding o f disability issues revolved
around concerns growing out o f their knowledge o f institutionalization and segregation. For
example:
I guess I am really interested in the deinstitutionalization o f the adult. You know,
when they came and they started living in group homes and stuff and they are
getting more and more support and they are also getting educated for themselves.
I am waiting to hear what they are going to say about their life and what they want
because I think that one o f the good things that will come out is that they will say “No, I want to be able to do this and I have choices here.” And you know, they'll
add to the community as they leam about living outside. I mean they didn't have...
when I think o f the institutions, I mean, as a student nurse, I went over to mental
health, huge health hospitals. When I think o f it now, the power the ordinary
person had and the workers had over these people. It was phenomenal. And the
basic things that these people didn't have.
Parents in this study clearly believed that disability is a human rights issue. In contrast to
stories about people working from medical, tragic or bureaucratic models of disability, their
critical analyses provided a much more positive basis for making sense o f their situations. It is also
important to note that parents’ reality is sometimes at odds with more deficit-based
conceptualizations o f disability. The report that the therapists asked “ who told her this stuff?”

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suggests that this is a struggle which is far from complete.
Sociologicai Discourse. In addition to ofifering a historical analysis on disability issues,
parents also expressed a concern for sociological issues. These statements were o f interest
because they suggested a concern for much broader social issues than just disability:
Actually it’s our society, this North American society, nowhere else in the world
that look to outsiders to care for our disabled population. Y ou know, most
societies it’s the family, the village, you know, they all look after those people. Is
that idealistic? .... I mean that’s what I see.
This parent’s statement suggests a desire for a greater sense o f community, which implies that the
problem is not necessarily impairment per se, but the social structures and the ways in which they
define and respond to those impairments. North American culture revolves around the nuclear
family, individualism and independence. Having a child with a significant impairment requires the
assistance o f extended family and the community, and, as one parent related in the following
example, requires interdependence rather than independence:
At the word independent, I guess I go ballistic. Don't tell me to teach my kids to
be independent because nobody is ever independent. We are all dependent on each
other and the more we deal with that, rather than the independence thing and have
her take off her coat. I don't really care whether she takes off her coat. It just
exhausts her and she can't leam anything else. So trying to balance those kinds o f
things and trying to say, no, I want her to know as many people as possible
because she is going to have to depend on any number o f people rather than just 2
or 3. If you isolate her in a segregated school or in a segregated room you are
effectively telling her she is dependent on 3 people. I want her dependent on 30

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people in a regular classroom - 30 kids, who are going to be working with her,
hiring her, whatever, looking after her as a caregiver.
In the debate on inclusion, these kinds o f assertions are often missed. Advocates for people with
disabilities, like this parent, are not saying society should just create more humane conditions for
people with disabilities. They are saying that society needs to redefine some fundamental and
taken-for-granted aspects o f existing social relations. This would include cultural pre-occupations
with independence.
Parents in one o f the groups in Lakeville expressed the view that living in a smaller
community was significant factor in their adjustment to having a child with disabilities, particularly
in relation to the factors mentioned above.
I mean there were lots o f very difficult times. But I think that we were fortunate in
being able to be in a small town like Lakeville that had a lot o f support, not just the
professionals and those that were interested, but from the community at large.
That really made a difference.
To summarize, parents’ statements about community and interdependence seem to reflect not just
a new awareness o f disability, they speak to a renegotiated set o f cultural practises. Their
statements are congruent with the idea that it takes a village to raise a child.
Making Sense o f Labels and Diagnosis
Parents discussed the issue of specific diagnoses or labels in all three o f the interviews.
This theme emerged in the analysis in regard to constructivist concerns for the practise o f naming
or constructing realities o f particular kinds o f differences. In this regard, I found that many o f the
parents’ statements about the specific diagnoses o f their children were seen not congruent with
critical constructivist theory. Parents tended to describe their children’s various diagnoses as real.

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rather than as socially constructed.
A number o f parents communicated that a specific diagnosis did not create problems for
them but that it helped them in accessing services. For example:
You don’t want your child to have a label but my child has a definite diagnosis and
I think it’s easier in the system when your child is labeled because you know
exactly - although there’s many variables with the label and my child has fallen
through the cracks a couple o f times - but it is definitely easier, if your child is
labeled.
For another parent the issue o f diagnosis related to meeting a child’s specific educational needs:
We did not know until Bonnie was 17, what the problem was and all we ever got
was developmental delay due to unknown cause but had we known, we would
have had more to go with for education and different tactics to use... had the
labeling happened at school age, say S and 6 years o f age. There’s certain
characteristics that I’ve read about since I’ve known what her diagnosis is that just
fits her perfectly and there are behavioural management ways o f dealing with
people.
Both o f these statements represent the view that having a specific diagnosis is useful. There is a
practical utility to having a diagnosis and problems are seen to be created by not having them.
For both these parents, their children’s diagnoses are well documented and defined genetic
conditions with fairly apparent physiological and neurological characteristics. Both parents related
that information they have about the condition fits exactly or perfectly with the experience o f their
child. The first parent does however note the possibility o f falling through the cracks and
describes the value o f the label as a systemic need.

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Within some parents’ statements about labeling is the distinction between the stigma
associated with the labeling o f a condition and the identification o f the individual functional
differences. One parent spoke about a doctor’s reluctance to get a full diagnosis for her child:
And her doctor said to me, “You know Mary, I really don't like having labels on
kids” but I said, “We have to have the labels to get the funding otherwise she's
going to be left to fend on her own at school and that's not fair." And then he
agreed to send her up to Dr. Jones to get it done; otherwise he wouldn't have - he
said, “I don't like labels on kids.” I said “it's not really a label on her it's a label for
the school system so she can get funding.” He said “Okay, as long as that's the
only reason you're doing it.” Well what else would I do it for? I already know that
she has problems.
This parent describes the specific diagnosis as a systemic need. The school needs a label in
order to give her child services. The parent is confi’onted by the doctor’s dislike o f labeling kids.
In this example, the parent deconstructs the doctor’s view o f labeling. His view seems to suggest
the assumption that having a label will result in stigma for the child. This may be a genuine
concern but, within the existing configuration o f public schools, children can only get assistance in
school if their problems have names. Sadly, if the child was left to fend for herself, then she might
get all kinds o f other labels like “lazy” and “unmotivated.” The situation this mother relates is
truly inescapable. Returning to the first example presented in this theme, having a specific label is
indeed what “makes it easier within the system.”
Parents also discussed the more critical aspects o f labeling which had to do with
perceptions that their children would be “pigeon-holed”, not allowed to “express their complete
potential,” “held back” and “written off.” For parents, the issue o f labeling was more important

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I

I

II
Ï

for how it related to their own day-to-day experience with their children. Certainly, they related
they were concerned with the evaluative aspects o f labels, but for the most part their statements

I

reflected an acceptance o f a reality underlying the label. Particular aspects o f Down Syndrome,

!

Fragile X, ADHD and the various other named disabilities were seen to fit with their experience.

I5

It wasn’t the name o f the condition that created the problem; it was the way those conditions

I
I

were perceived by others. Other people’s perceptions seemed, in some cases, to be that these
names were imbued with a power to stigmatize individuals. For many o f the parents, stigma was a
secondary concern to having a general fi'amework for understanding how their children were
different and for accessing appropriate services.
The Big Picture - Non Pathological Views
This theme collected parents’ general statements about their experiences in raising a child
with disabilities. In many cases these statements were the initial responses o f parents after being
asked to describe their experiences in raising a child labelled with disabilities. They are presented
as a summary o f many issues in previous categories.
The parents in this study described their experiences as living in a different world fi’om that
o f parents o f children without disabilities. That world is sometimes sad, and sometimes
frustrating, but it is also a world o f rewards and challenges. The first parent to speak in the first
interview described her family’s experience:
We had lots o f support by close family, friends and in the education system, the
school system. We have had some problems with the kind of supports we want
through social services, but if we look at the whole total picture, I would say that
they are small problems that are gone. They are not large problems. I feel there
are ways to work through them and we have worked through a lot. People that I

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have met through having our child... have been wonderful people and there have
been a few that have really helped a lot in the big picture. Generally, they have
been wonderful people. We have gained a lot o f knowledge ourselves. We had
pretty positive experiences. But everything isn’t perfect and we re all still working
for things.
This is not a problem-saturated tragic description o f the experience o f having a child with
disabilities. There are problems, but there is a way to work through them. There is the suggestion
that various service systems played a role in providing supports and that in the end the acquisition
o f knowledge and the development o f relationships are some o f the rewards o f being the parent o f
a child with disabilities. The parent in this case is the mother o f a young adult with developmental
disabilities. In contrast to this, the following statement is from the parent o f a younger child:
There isn't a day goes by that I don't look at her as child with [name o f syndrome]
as opposed to my daughter. She still can make me laugh and we still have lots o f
good times and she is still my baby even though she is 5 and a half, and that's been
good for me too. I mean most mothers love that part o f it and think... I don't
know that I'll ever just see her as a child - not with the disability. Yeah, I'm fitting
into the same role as these guys in that my life is ruled by the calendar....we had
counselling in the beginning and that was okay. That was nice to go and talk to
somebody. Again it's part o f just having somebody listen is the biggest part. And
some of the professionals look like they are paid to listen and others really care.
This statement suggests some ambivalence but it, also, is not tragic. It suggests more o f an
attempt to make sense o f her situation by balancing the benefits with the problems. While parents’
general descriptions o f their experiences varied a great deal, they all suggested that having a child

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with disabilities was a different experience. Emphasis should be placed on “different.” Having a
child with an impairment is not a bad thing, for all parents, in every situation, at all times. It has
rewards as well as problems. Parents’ stories in this study appear to confirm this position.
Parents’ stories however, also speak to other issues. These parents’ stories suggest that
they have adopted (or are in the process o f adopting) an individual view o f parenting and what it
means to live with a disability. To a great extent, my sense is that they want to be able to tell their
own stories rather than to live according to accepted versions o f what it is supposed to be like to
be the parent o f a child labelled with disabilities. To be sure, I found some o f their stories
contained contradictions and inconsistencies. From a constructivist perspective, this is a good
thing because, unlike knowledge based on a single or essential truth, individual narratives are
neither logical nor straightforward.
For these parents, being able to tell their own stories is an important feature o f coming to
terms with having a child labelled with disabilities. There are, however, other important issues. I
argue that the culture does not make this easy for them since parents interact in a world where
many others may subscribe to disempowering views o f disability. Parents told a number o f stories
about how service systems and disabling narratives created problems for them. The following
example is a description o f this type o f result and also is a strong example o f a deconstructed
view:
I used to have people say, “I don't know how you cope,” (I couldn't cope) and,
you know, I really think that it's not Roberta that is the problem. It's the hoops
that I have to jump through the rest o f the time and that's the problem The child is
not the problem. It is what I have to do to go through the steps to get the service I
need for my child. That is the most stressful, most aggravating thing I think any

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parent comes across.
In this parent’s story, the bigger problem (the “hoops”) is tied to the system and rooted in the
dominant discourse on disability. It is not the child, it is not the nature o f the impairment and it is
not, strictly speaking, the parent’s cognitive appraisal o f her particular situation. This statement is
very similar to both, the idea that the problem is not the problem (Watzlawick et al., 1974) and
the critical definition o f disability where disability is a problem o f the disabling society (Lermy,
1993). This parent’s perspective suggests that counselling strategies based on more critically
oriented principles such as deconstruction are potentially useful. She has deconstructed a
particular view o f disability and is in the process o f constructing another. This same parent began
the interview by stating “knowledge is power.” I did not ask her whether she had read Foucault.
The parents o f children with disabilities in this study related their experience with stress
sorrow and fhistration. They talked about how particular kinds o f support can help them refi'ame
their assumptions about their children, give them an outlet for venting emotions and give them
specific strategies for dealing with stressful situations. Many o f the parents’ stories suggested,
however, that larger themes are also important. In listening to and analysing these parents’ stories,
I found that some o f the parents’ comments contained a powerful depth o f perspective. In
attempting to leam about and develop effective strategies for living with difference, these parents

have developed philosophical insights which challenge stereotypical views of being the parent o f
a child with disabilities as well as specific aspects o f both social service delivery and the dominant

social narrative.
Observations on What Parents Did not Deconstruct
In conducting this research, I have tried to stay open to examples o f what parents have not
deconstructed and viewpoints which do not fit within the framework o f critical perspectives on

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disability. The analysis o f parents’ stories about labeling and diagnosis provided some examples
where parents may take for granted the constructed meaning o f labels o f impairments. Parents
stories about affective issues suggested the view that "every parent" o f a child with disabilities
experiences certain difficult feelings. In the theme o f comparisons, some parents described the
reminder that their children were not normal as constant and difficult. In this respect, I would
describe many o f these parents’ stories as intersecting more traditional perspectives and the
emergent view that to have an impairment is not a bad thing. The critical perspective o f
individuals with impairments, presented in the literature review, suggested that individuals with
disabilities are seeking a dialogue on parenting and disability based on an acceptance o f
differences which does not equate disability with sickness and death. For some parents o f children
with disabilites, I think this perspective may take time.
Perhaps the most candid revelation a parent made was a reflection on other parents o f
children with disabilites whose children had died.
I think that one o f the other things was, two families that we knew did have deaths
and it is for the rest o f us kind o f hard too because you do still think... “how would
we feel if that was our kid.” In a way, there is sort o f a feeling. Well they're out o f
it now. They don't have to deal with this anymore. It is going to take them a while
to adjust but they're going to leave our group and go on and do different things
and there is sort o f a bit o f envy there, you know. They can now revert to a normal
life. On the other hand, there is the fear that it could happen to your kid too and
how you would deal with it.
While a critical bias about acceptance is that it is preferrable, this parent’s story is an excellent
reminder that acceptance cannot be forced. While I think this parent’s story is about ambivilence

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rather than sorrow, it is nonetheless a testament to the fact that for many parents o f children with
disabilities, the old stories still resonate.
Summary
These results have detailed parents’ stories about the following: other people’s
assumptions about themselves and their children; coming to terms with difference affectively and
cognitively; relationships with professionals and how elements o f professional discourse can
create problems for them; and parents’ constructions o f disability and impairment.
In talking about other people’s assumptions, parents related stories which I have called
horrible pictures and essentializations. Parents provided examples which suggest that they have
identified these as subjugating discourses or, in their own words, assumptions. The purpose o f
creating this theme was to elaborate the various kinds of stereotypes about children with
disabilities and their parents. Their stories demonstrate that tragic and dysfunctional views o f
impairment persist. The important point from this theme is that this often contradicts parents’
lived experience. Parents also related that they also encountered narrow views o f themselves.
They perceived they could be seen as stoic survivors, in denial, unrealistic in their expectations,
more prone to abuse their children and finally as the champions o f advocacy. Some o f these
stereotypes contradicted each other.
In their stories about coming to terms with difference, parents talked about the emotional
issues in coming to terms with their child’s impairment. Many o f their stories did not deconstruct
the assumptions about feelings o f sadness and guilt detailed in the literature on counselling of
parents of children with disabilities. In other words, those feelings were very real for parents.
Their stories did demonstrate that feelings o f guilt and sadness can often be compounded by
features of cultural discourse. These features included a lack o f accommodation for their

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children’s differences, a discourse that blames mothers for producing less than perfect children o r
parents for not toilet training their children by the age o f two and what I would say is a discourse
that is conceptually similar to Oliver’s (1993) idea o f the “fetish for normality.” Comparing for
these parents was something they did not take for granted. Humour and optimism were seen to be
antidotes for sadness and guilt.
The themes and sub-themes in the category o f stories about professionals sought to locate
parents’ perceptions about the various different kinds o f professionals and systems they
encounter. Many o f these stories were negative. Parents talked about too much service, too soon
(early intervention), service given with no appreciation o f context (behaviour management and
rehabilitation) not enough service (medical systems), service that varied within the system
(school), service they perceived as objectifying their children (medical systems and rehabilitation)
and service which just did not make sense (bureaucracy). I presented their assessments o f service
as attempts to redress imbalances o f power between themselves and professionals. There stories
suggest the importance o f developing partnerships. They deconstructed what I have termed
“expertness” rather than specific expertise.
The final category was parents’ stories about disability. Parents’ stories about disability
included their own historical and sociological analyses o f what it means to be different within the
existing culture. They provided examples which situated their stories within an historical
framework and which spoke to an idealism about diversity that suggested that problems o f
disability are a feature o f existing social structures. Parents talked about the need for labels and
how it made it easier in the system if their children had a specific diagnosis. This was not seen to
be deconstructive. On the other hand parents also talked about how assumptions about diagnosis
could create problems for their children. Finally, some general descriptions o f parents’

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experiences, detailed the deconstruction o f the tragic narrative on disability.

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CHAPTERS
DISCUSSION
Analysis o f the Results
The hypothesis o f this study was that the stories of parents o f children labelled with
disabilities about their own process o f adaptation, growth and coping deconstructed the dominant
discourse on disability and its effect on parents. Returning to White’s (1991) definition o f
deconstruction as “procedures that subvert taken-for-granted realities and practises”, the
narratives o f parents in this study provided a number o f examples o f statements which identify
taken-for-granted assumptions about disability, about being the parent o f a child with disabilities
and about the complex set o f social and professional relationships in which the parents o f children
with disabilities interact. Parents’ stories also provided examples o f statements which support the
critical discourse on disability where disability is not a problem for the individual but is a problem
o f the disabling society (Lenny, 1993). To be sure, not all of the parents’ stories fit within these
critical frameworks. A summary o f the results o f these focus group interviews with respect to the
three research questions follows.
Question 1. To what extent have parents o f children with disabilities deconstructed
dominant social discourses about being the parent o f a child with disabilities?
If the dominant social discourse on being the parent o f a child with disabilities is
understood as the predominance o f a tragic or pathological view o f parents, then much o f what
these parents said did not fit with the conceptualization that parents are "suffering from chronic
sorrow" or inordinate amounts o f stress. This is not to say that parents did not experience
difficulties related to feelings o f sadness and guilt, nor that stress was not a reality o f their day-today lives. These feelings however, were not the sum o f their experience. They were also

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concerned with issues o f making sense o f disability, were involved in advocating for their children
and related stories about rewards as well as difficulties. Their individual perspectives varied with
respect to the aspects o f their experiences they emphasized and how they had changed their
relationships to the problems and challenges associated with raising a child with an impairment. If
there was one commonality to these parents' stories, it revolved around being able to tell their
stories and to have those stories validated. While I have not presented an analysis o f the theme o f
supports, parents related that they thought that there was a tremendous value in parent support
groups. This value related to an empathy that was sometimes unavailable through either fiiends,
professionals or other family members.
Laughter, for many o f these parents, was just as important as were tears. Those tears were
not, in all cases, a pre-programmed emotional response to having produced a “defective” child,
but were often tied to society’s lack o f accommodation o f their child’s differences and to others’
unexamined beliefs based on the dominant story o f the value o f being "normal." The example o f
experiencing chronic sorrow in the parking lot when someone had blocked the handicapped
access is important because sadness about having given birth to a child with disabilities needs to
be viewed against the backdrop o f society’s chronic lack o f acceptance and accommodation of
individuals with disabilities.
Feelings o f sadness were also tied to the idea o f normal. From a critical constructivist
perspective, normal can be viewed as an example o f a subjugating language practise. It is
exacerbated by the practise o f comparing. The example o f the parent’s refusal to compare
suggests a need to have control over this subjugation and implies a rejection o f the “fetish for
normality.” Zimmerman and Dickerson (1996) present an interpretation o f narrative therapy
where problems are personified as entities. The title o f their book is “The Problem Speaks.” and

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throughout their writing and their therapy they use a narrative device where the “problem”
literally speaks. The problem o f comparing speaks frequently to parents o f children with
disabilities and much o f what it has to say is not very helpful.
Parents made statements which challenged particular aspects o f the professional discourse
on disability. They talked about the need to question professional certainty. They did not question
expertise, however, and they welcomed advice when it was useful. They did question the certainty
o f “expertness,” particularly the idea that there was a single solution to every problem. Parents
expressed a desire for professionals to broaden their view o f the context o f their lives. Many kinds
o f interventions were seen by parents to be neither practical nor useful. It is significant that at
least one o f the parents expressed the view that her daughter was “not broken.” Going to birthday
parties, having friends, being independent (and interdependent) and safe were far more pressing
and important concerns for her daughter than strict therapeutic agendas or complicated behaviour
management plans. It is a cliché, but my interpretation o f what these parents wanted most was for
their children to be happy.
These parents also discussed historical and sociological aspects o f disability. This
suggests that having access to this kind o f discourse was an important part o f how they have
made sense o f their situations. Their interpretations o f these discourses suggested a commitment
to the move away from segregation and institutionalization and towards the value o f greater
inclusion and tolerance. Parents also suggested that this change continues to face cultural and
systemic barriers. I find it disturbing that some o f the parents reported that the movement towards
inclusion is denigrated by some professionals and that these parents interpreted this as
professional fears about a loss o f control.
Some o f the parents’ statements suggested that they are involved in a kind o f

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revolutionary dialogue. In one o f the groups, a parent mentioned that 500 people showed up to a
government- sponsored parent advocacy convention. The sponsoring ministry was surprised at
the turnout. They had expected fewer. The father added that a deputy minister was quickly sent
up to address the concerns o f those parents. Based on this parent’s observation, it is accurate to
say that there may well be a growing movement o f politically informed parents in this province
with a very different kind o f consciousness about disability.
On the subject o f diagnosis and labeling, some parents related stories which do not
necessarily represent a deconstructed perspective. From a critical perspective, to say that
information about a particular kind o f disability "fits exactly" is problematic because it suggests
that there is one “true” way o f characterizing a particular impairment. On the other hand, one o f
the criticisms o f constructivism is that it can lead to a questioning o f everything, or that it
becomes what Olssen (1996) describes as nominalism. Given that the focus o f this study has been
the use o f critical constructivism as a social thesis, it is important to emphasize that parents also
shared stories about how labels are limiting often because of other people’s assumptions o f what
those labels mean. Parents described their children’s conditions o f difference in specific
behavioural terms or as having particular kinds o f problems. As a pragmatic concern, this points
to the need for constructivists to be careful in rejecting all claims to legitimate knowledge based
on empirical observation. Neurological, physiological and genetic differences, regardless o f how
well they are understood or socially constructed by scientists, represent observable phenomena
with various commonalities and very real implications for day-to-day living. From a critical
perspective, it is when reductionist views supersede an individual’s identity that they become
problematic.
Question 2. With regard to counselling and support, do these parents’ stories identify

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assumptions made by help-givers based on dominant constructions o f disability. Do these
assumptions impact negatively on the counselling and support they recieve?
Parents presented examples o f how others tend to essentialize their experience. The
example o f the social worker advising the parent to not let disability affect her lifestyle represents
a profound lack o f understanding o f living with disability. Together with other forms o f
essentialization, the dominant story is based on assumed pathology. Parents reported that, when
they became politically active, they risked being labelled as being “in denial” or as being seen as
“trouble.” One parent also suggested an emergent conception o f the “super-parent” o f a child with
disabilities, where advocacy is placed solely on their shoulders. Shapiro (1993) describes an
analogous polemic for people with disabilities in the conception o f “Tiny Tims” - the sympathetic
image o f the disabled poster child - and “Super Crips” the remarkable individual performing super
human feats (e.g. Terry Fox).

Parents also discussed ways in which their children were evaluated based on other
people’s’ assumptions about disability. The theme o f “horrible picture” detailed what I would
suggest is the persistence o f out-dated stereotypes about disability. One o f the parents was offered
the choice o f institutionalization. Another was asked if she wanted to give her child back. Parents
related that people assumed that their children caused them more stress and grief than was the
reality. While parents also told stories about individuals who held more positive views o f
disability, they related that many people continue to base their assumptions about their children on
negative and tragic views. One o f the parents commented that she hoped that people at least try to
leam something more positive about their children. Unfortunately, these parents’ stories suggest
that there continue to be some people who do not. I think her wish suggests ambivalence more
than it does discrimination. In this respect, parents’ stories foreground the continuing need for

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education and awareness o f disability issues particularly in light o f inclusionary service
philosophies. Many o f these parents negative experiences with professionals were in service areas
where personnel had no specific training in issues o f disability and impairment.
Question 3. What are the particular kinds o f problems which form the content o f parents’
need for counselling?
One o f the original purposes o f these interviews was to generate data about what parents
viewed as most important in relation to the content o f counselling and support. In conducting the
interviews, the intended procedure for generating this data was applied inconsistently between
each o f the groups. In the Lakeville support group, the final part o f the interview involved a
formal elicitation o f parents’ priorities by having each parent describe what were the two most
important issues to them with regard to counselling and support. The top three issues were
derived by looking at which issues got the most votes. In the Mill Town support group, because
o f time constraints, I addressed the issue quickly by asking participants to agree or disagree with
what I thought were the most important issues. In the Lakeville CDC group the priorization o f
issues was accomplished by having each o f the three parents pick the most important issue for her
personally.
In retrospect, the consensus-ranking component o f the study was problematic because o f
the nature o f open-ended focus group research. Each o f the groups had a distinct group dynamic.

In the case of the pre-existing support groups, parents were very comfortable talking with each
other. In the Mill Town support group, in particular, parents enjoyed sharing their stories. While
this produced rich data, it meant that it was more difficult to impose the kind o f structure
necessary to accomplish the process o f priorization.
With the above mentioned points in mind. Table 4 summarizes each group’s ranking o f the

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top three issues:
Group1
LVSG

1. Accessing supports for child’s independent living
2. Frustrations with Bureaucracy
3. Behaviour management Issues

Group 2
MTSG

1. Parent - professional relationships
2. Day to day coping and management
3. Making connections with other parents o f children with disabilities

Group 3
LVCDC

1. Frustrations with medical systems
2. Getting support for children’s needs
3. Other people’s expectations
(these are not priorized because each o f the three participants picked
one.)
Table 4 - Summary o f the ranking o f issues.
Foregoing the procedural inconsistencies for achieving these results, they do point, in all
three cases to a concern for involvement with professional service providers as an area o f concern
for counselling. The overall content for all three o f the interviews generated more statements and
stories about professionals and service systems than any other topic o f discussion. Whether this
was due to the nature o f focus groups (these conversations are relatively safe), or whether that is
truly how these parents perceive their needs for counselling, is difficult to determine. Parents in
the Mill Town support group made mention o f the fact that the presence o f professionals and the
need to access services was a central concern o f their day-to-day lives. Similarly, the parents in
the Lakeville groups told many stories about their involvement with other professionals. While
this specific question has been answered haphazardly, when these results are taken together with
the analysis presented for the first two questions, these parents’ stories suggest that it is important
for counsellors to take an ecologically oriented perspective. In other words, counselling parents o f
children with disabilities involves looking at more than just affective issues. It also involves
looking at both ontological and systemic issues. This is congruent with Berry’s (1995) use of
social ecology as a tool for counselling parents o f children with disabilities.

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Question 4. Are the constructivist theoretical principles o f narrative therapy relevant and
useful in the practise o f counselling parents o f children with disabilties?
This study has explored constructivist counselling theory and dynamic definitions of
disability in relation to the counselling and support o f parents o f children with disabilities. It has
presented information fi-om the narratives o f three groups o f parents o f children with disabilities
that show examples o f how these theoretical perspectives might be useful to counsellors and other
support people. While I have co-constructed the presentation o f parents’ stories, it is important to
point out that some o f the specific statements that were seen to be deconstructive (i.e. - the child
is not the problem) were unsolicited. In this respect, the constructivist counselling idea that
problems are not within people is potentially very relevant to working with the parents of children
labelled with disabilities.
I would argue that the two other elements in these parents’ stories also suggest that
narrative therapy is a relevant and useful approach. First, parents situated their narratives within a
historical and sociological framework which explicitly examined cultural assumptions and wider
meanings about disability. Second, parents identified and questioned assumptions or
essentializations about themselves and their children. Many o f these assumptions were subjugating
attempts to construct their social realities which were implicitly and explicitly offered by
professionals. Deconstruction, in this regard, involves helping parents to unmask the “truth” o f
subjugating stories by providing alternate evidence or stories which contradict those assumptions.
Deconstruction also involves validating parents’ thoughts and feelings in regard to their family’s
experiences as long as this is done without a violation o f the child’s rights or needs.
Another strength o f narrative approaches to therapy with regard to parents o f children
with disabilities is that it is an approach to therapy which has somewhat consciously divorced

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itself from the medical model o f psycho-therapy (Zimmerman & Dickerson, 1996). Parents o f
children with disabilities often spend a lot o f time with medical people who (necessarily at times)
focus on the pathological aspects o f impairment. I think the emphasis on stories is a useful
alternative to being involved in clinical and sometimes impersonal medical settings. “Disabilities is
not measles” (Rioux, 1994, p. 1) has emerged as a kind o f slogan in the field o f disability studies.
Narrative therapy works from a similar sensibility about counselling. Narrative therapists do not
treat people for their problems; they listen to their stories.
In keeping with Peavy’s (1993) notion that no single counselling approach can be used in
all counselling situations, some cautions are in order. These parents are not representative o f all
parents o f children with disabilities. They were, for the most part, vocal and progressive
advocates for their children. Parents in one o f the groups made mention o f having contact with
what they termed “down and outers.” By this, they meant other parents who had given up
struggling with issues o f having a child with disabilities. From my own professional experience, I
have encountered parents who continue to work from a story o f shame and sorrow. I think, in
some cases, those parents do not want to hear that they should accept their child because their
construction o f reality is based on subjugating cultural discourses. There are other parents who
are probably not at all interested in the political dimensions o f service provision and still others for
whom chronic sorrow is a very real and resonant experience. And, yes, I have also encountered
parents “in denial." It is important to note that the adoption o f constructivist principles,
particularly the idea o f deconstruction, can take different forms and deal with different kinds o f
issues than those presented by the stories of parents in the current study.
One o f the main premises o f narrative therapy is to help individuals re-author their lives,
based on their own stories, rather than on the stories o f others (White and Epston, 1990). These

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results show how some parents have managed to do that often in the face o f attempts by others
to impose subjugating realities. Parents suggested that helping relationships work when
professionals acknowledge that, in many respects, “the parent knows best.” I think t h ^ have
some good advice.
Unmasking the Dominant Story
One o f the theoretical concepts underpinning the work of Narrative Therapists is the idea
o f the different story. According to White and Epston (1990), “those aspects o f lived experience
that fall outside o f the dominant story provide a rich and fertile source o f the generation or
regeneration o f alternative stories” (p. 15). One o f the features of telling different o r alternative
stories is that they help to unmask or deconstruct the subjugating nature o f the dominant story. In
this respect, the narratives o f parents in this study have identified several features o f the dominant
story about disability, about being the parent o f a child labelled with disabilities and, somewhat
surprisingly, about being a parent in general.
The dominant story, based on the analysis o f these narratives, encompasses the following
constructions. In keeping with critical orientation o f this study, there is some exaggeration in my
reconstruction o f the dominant narrative. In relation to disability: it creates a pathological
distinction about certain kinds o f physical and intellectual differences which are arranged
hierarchically according to severity. These particular kinds o f differences are seen to be tragic and
inherently detrimental to one’s quality o f life. They represent an economic liability to society and
should be eliminated or reduced. For parents who do give birth to children with disabilities, this
can lead to the feeling that they have done something wrong. Blackford (1993) describes this
discourse as " the patriotic ideal for women (that) has been translated into a moral responsibility
to produce children who are healthy, bright, and motivated enough to compete with children fi"om

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Japan and Germany for a dominant share o f the economic battle ground" (p. 290). In this sense,
disability acts as a mechanism o f social control for all parents.
In relation to being the parent o f a child with disabilities: the dominant story for parents is
sympathetic and emphasizes grief and stress. For some people, this story about parents appears
not to have changed from Olshansky’s (1962) original conception o f chronic sorrow which is:
The permanent, day-to-day dependence o f the child, the interminable frustrations
resulting from the child’s relative changelessness, the unaesthetic quality o f mental
defectiveness, the deep symbolism buried in the process o f giving birth to a
defective child; all these join together to produce the parents’ chronic sorrow. That
so many parents bear this sorrow stoically is rich testimony to parental courage
and endurance, (p. 192)
Alternative stories about being a parent o f a child with disabilities contradict this ^new. However,
in mainstream discourse, these stories tend to be dismissed as exceptional cases. For example,
certain parents might be seen as having exceptional personal qualities while other parents might be
described as being in denial about the ultimate potential o f their child and avoiding their own
feelings o f grief. The dominant story leaves little room for different kinds o f experiences including
humour, the idea that there are benefits to having a child with disabilities, or the possibility that
parents can love and accept their children.
In relation to being a parent, culturally available stories about being a parent revolve
around ideas that parents are completely responsible for their children’s behaviour, and that
parents ought to understand and strive to meet a mechanistic set o f developmental milestones.
The dominant discourse also creates the idea o f the "super-parent" - completely involved in, and
cognizant of, their child’s development. Such super-parents are able to manage work and family

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obligations, set firm limits and provide maximum stimulation for their child to grow and develop.
Underlying the idea o f the super-parent is the idea that parents are socially valued to the extent
that they have produced and socialized potential winners in the global economy - straight A
students who know how to compete, who were toilet trained at eighteen months and who said
their first word at seven months; in other words - “perfect children.” Perfect really means those
children with qualities that are socially admired and valued. Nelson (1993), who is the parent o f a
child with disabilities, describes her interpretation o f individuals who appear to work fi’om these
kinds of assumptions:
Sadly, I have found that people exist who actually think in terms o f perfection and
are unable to appreciate the differences in others. Misinformed, ignorant and, I
think, cruel, these are the adults who teach their children nothing about tolerance,
kindness or admiration (p. 87).
O f course, the ideology that perfection is both possible and desirable is not without precedence. In
political science it is one o f the key underpinnings of fascism. In this respect, the identification o f
the dominant narrative on parenting is indeed very provocative. There are no perfect children just
as there are no perfect human beings. Everyone is flawed, some more than others but the claim to
perfection remains an insiduous feature o f dominant social narratives.
Different Stories - Deconstructing the Dominant Stories
Disability

Parents’ stories in this study demonstrate that problems associated with disability are not
inherent features of impairment. Disability is the result o f ideological and structural barriers
imposed on people with impairments by the dominant interests o f the majority. Ideologically, this
critical perspective on disability revolves around the fact that disability is not “bad” but that it is

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“different.” These parents’ experiences, alone, deconstruct the idea that disability is always tragic.
What they were told at the beginning o f their child’s life about what their child’s life would be
like, was often in direct contradiction to their lived realities. In other respects, problems were
created by a chronic lack o f accommodation, an often overwhelming intrusion by various
professionals and rehabilitative discourses into their lives and perhaps, most importantly, an
impersonal and indifferent bureaucracy.
Parents articulated a belief in the possibility o f reframing ideas about disability where
individuals are “not put in boxes’’ but where “everybody has potential and should be encouraged
to develop the potential, whatever that potential is.” Parents described their realities, in many
instances, as a case o f tearing down walls in order to get the supports necessary to achieve this
goal. Their stories suggested that elements o f a disempowering and static evaluation o f disability
continue to underlie some systems within the communities in which these studies were conducted.
A father in one o f the groups, repeatedly made reference to his guiding philosophy which was
“don’t say no until you know it is no”. In this respect, parents’ definition o f disability represents a
shift from what is deficient to what is possible. While this kind o f philosophy is clearly not alien to
the field o f services for people with disabilities, apparently the ideal is a long way from the reality.
This suggests the need for a more thorough evaluation o f how disabling stories persist within
various systems. In other words, what exactly is stopping the ideal from being realized?
Finally, the idea that some o f the assumptions in people’s interpretations o f the promotion
o f pre-natal care might be seen as a subjugating discourse may seem quite controversial. The
analysis of parents’ statements, in this regard, is not meant to imply that such practises be
discontinued. Rather, it suggests that the concern for expectant mothers and healthy (not perfect)
babies can be balanced with the full knowledge that certain conditions are inevitable regardless o f

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anything expectant parents do or not do prior to or during pregnancy. Even if there is a
preventable cause, blame does not help anyone. Balanced concern should also address
assumptions about those conditions which can be detected prenatally. Down syndrome, for
instance, may be viewed as a pathology, but within the lived experience o f parents o f children with
Down syndrome, it can also come to be seen as a particular kind o f difference. Expectant parents
should be allowed to make choices with the full knowledge o f these alternative stories, and not
just on the basis o f the pathological view. The perspective o f the information for parents o f
children with Down syndrome in the literature review is an example o f this more balanced
approach.
Being the Parent o f a Child with Disabilities
When the very first statement in the first interview focussed on the positive aspects of
having a child with disabilities, I can honestly say I was somewhat surprised. While this probably
speaks to my own assumptions o f what I expected, it was an immediate deconstruction o f the idea
that being the parent o f a child with disabilities is always sad and stressful. I actually had to probe
a few times before parents talked about “problems.” It is important to note that the parents in the
first group were parents o f older children. Three o f the five families had children over 20 years old
and the youngest child was 12. These parents, nonetheless, focussed on the rewards and not on
how stressful or sad their lives had been because they had children with disabilities.
Parents in all three groups related that there were many times when they experienced
sadness and guilt as well as some difficult and stressful times. They also described these issues as
elements o f their lives that they were able to overcome or move beyond. They made no mention
o f Olshansky’s “permanent day by day dependence, interminable fhistrations” or “deep
symbolism” tied to the “unaesthetic quality o f mental defectiveness” (p. 192). The second and

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third interviews, in contrast to these pathologizing assumptions, culminated in parents bringing
out wallet pictures o f their children so that the co-moderator and I could see the children we had
been talking about in our conversations. That their children were a source o f pride - real people
with faces and distinct personalities - does more than deconstruct the assumptions implicit in
Olshansky’s description o f chronic sorrow; it utterly destroys them. It is an indication o f how the
view o f parenting a child with a disability has changed in the last 35 years.
To assert that parenting a child with disabilities is not a universally sad and stressful
experience is not a new idea. Certainly, the idea o f positive outcomes can be attributed to a
number o f factors, including the availability o f support, the meanings attached to disability,
personal characteristics like self efficacy and resiliency and formal supports by trained and caring
professionals. The current study seeks to add to this list o f variables the idea o f “discourse” or,
more precisely, how parents in questioning the influence o f the dominant story have renegotiated
particular kinds o f alternative stories about being the parent o f a child with disabilities.
Qualitatively, many o f the parents’ narratives represented this kind of deeper meaning making. In
two cases, parents referred to the idea that parenting a child with disabilities was, in certain ways,
preferable to parenting a normal child. Several parents highlighted that they had people and
positive experiences come into their lives as a result o f having a child with a disability.
Conversely, they articulated a discourse from others which denigrated or denied this alternate
reality. Parents mentioned that other people perceived their lives as being more dysfunctional than
the reality. In some cases, parents saw this as ironic. In other instances, the pathologizing view
was seen to have limiting effects. The admonition to not let disability affect lifestyle, mentioned in
the results, is one example. In postmodern society, this intersection o f older tragic stories with
new more positive stories is a new feature o f the discourse on the parenting o f children with

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disabilities. It is difScuIt to say that few assumptions are legitimate and more accurate to assert
that the experience is truly individual and unique.
Being a Parent
The deconstruction o f social narratives on parenting was somewhat o f a surprise finding.
The remark “Those bloody books’*was made in reference to the issue o f toilet training but I think
the idea can be extended further. These parents recognize that what is taken-for-granted, by most
parents, is probably not going to happen for their children with disabilities. Since most o f the
parents in this study also had children who did not have disabilities, they were more critically
aware o f particular elements in the dominant discourse on parenting.
Having expectations for children may be an inevitable feature o f being a parent. Those
expectations need to be reasonable and balanced with a notion o f the personal autonomy o f the
child. When those expectations are based on unquestioned assumptions about achievement and
unrealistic cultural ideals, there is evidence that the result is damaging to both parents and
children. The example of eating disorders is a case in point. The condition cannot be divorced
from cultural conditions which foster unrealistic ideals o f female physical beauty while at the same
time constricting women’s control over many aspects o f their lives. Young women with eating
disorders are often characterized as being over-achievers and have come fi'om families with rigid
expectations and rules about achievement and appropriate behaviour (Minuchin, Rosman & Baker
1978).
Parents in this study, related that they have learned to emphasize small achievements, have
fun with their children and give themselves breaks despite what the “bloody books” say they
should be doing. In short, they appear to have developed a view o f parenting based on the
philosophy that they are doing the best they can. This is not indicitive o f a laissez faire attitude

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about parenting so much as it is a more reasonable and balanced approach.
While parenting from a balanced approach seems like common sense, certain cultural
phenomenon suggest that some parents continue to be guided by a different kind o f perspective.
There are beauty pageants for toddlers and it is still possible to see parents fighting in the stands
at their children’s sporting events. Enrollments in elite schools have risen sharply in the last two
decades. Parenting decisions, for some, seem to be based on the taken-for-granted notion that
such cultural practises will improve a child’s chances for success in an increasingly competitive
world. Another example o f this is the political pressure on the public school system to impose
more standardized testing and show e^ddence o f the achievement o f higher test scores. While this
might be seen as a caricature o f relatively few parents, it is difBcult to argue that this discourse
does not somehow touch every parent, whether their children have disabilities or not. The political
dimensions o f telling different kinds o f stories, such as those stories o f the parents in this study,
cannot be ignored.
Parents’ stories in this study present an alternative to certain social constructions o f
parenting. This alternative also represents a challenge to dominant socio-political and economic
versions o f society. Viewed from a wider perspective, empowering all parents to appreciate small
gains, to cherish the importance o f having fun with their children and, most importantly, to value,
celebrate and reframe individual differences is a way to counteract the negative implications o f
society. It is philosophically significant that parents in this study spoke o f the need for community
and for building partnerships rather than barriers. Many o f the themes derived fi’om these
interviews related to parents’ desire for a different kind o f world - in particular for a society in
which all people are enabled and in which ‘disability’ is no longer a valid or useful construction.
Talle (1995) describes the society o f the Maasai in Kenya in which disability is not a valid

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construction. In the Maasai language, while there are words for specific kinds o f impairments,
there is no word for the western concept o f disability. He further contends that in Maasai culture,
descriptions o f impairment refer to practical concerns o f not being able to perfisrm a certain
function. According to his analysis, impairment is seen to be a difierence that can be a bad thing,
but it is seen to be neither stigmatizing nor a reason to remove a person with an impairment from
view. It is simply a result o f the way the world was designed by God. Parents do not have
disabled children in the Maasai culture; they just have different kinds o f children. Talle concludes;
They (the Maasai) both name the difference and mark it, but I argue that this
indicates acceptance and a lack o f fear o f the different or abnormal. To give birth
to a disabled child is not culturally defined as a crisis, requiring specific actions and
precautions. It is part o f life’s experience. (p.71)
In conclusion to the discussion, I offer the philosophical hypothesis that some parents in our own
culture are attempting to reconstruct a similar view about being the parent o f a child who is
different. As one parent put it, “You never think o f your life as dysfunctional. Everybody else
around you does. It's just different”. In other words, it is a different story.
Contributions o f This Study
This study has the potential to contribute to knowledge in the area o f counselling and
support o f the parents o f children with disabilities by elaborating a potential framework for
counselling interv'entions based on emergent critical definitions o f disability (Lenny, 1993; Oliver,
1993). According to Hornby and Seligman (1991), while there is an abundance o f research into
characteristics of families where children have disabilities, there is a dearth o f literature on specific
counselling strategies for working with this population. While this study has not defined a specific
counselling strategy, it has suggested that many o f the constructivist theoretical principles o f

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narrative therapy are evidenced in parents’ stories about how they have adapted to having a child
with disabilities.
This study has also described particular stereotypes or essentializations about parents o f
children with disabilities. It has suggested that, for these parents, change processes and the
particular ways in which parents make sense o f disability are varied and individual. In this sense,
the study afiRrms the notion that counselling and parent support interventions need to be
individualized and based on principles o f empowerment (Dunst, Trivette & Deal, 1994) rather
than generalized assumptions (i.e., Ziolko, 1991) about the experience o f raising a child labelled
with disabilities. In other respects, this study has questioned the need, in all cases, to approach the
task o f counselling parents o f children with disabilities with “awe and caution” (Ziolko, p. 31).
Quite the contrary, I think some o f these parents’ stories suggest counselling can be approached
with openness and respect and can also include a sense o f humour. Philosophically, this study has
sought to deconstruct the mystique surrounding certain “tragic” assumptions about the parents o f
children with disabilities.
Finally, this research has contributed to the field o f counselling by adding to the research
paradigm o f more critically informed counselling theorists. Postmodern approaches to counselling
present serious theoretical challenges to more traditional counselling theories. A large part o f this
challenge relates to meta-theoretical concerns about the limits o f positivist inquiry in counselling.
This study has pointed out particular examples how interpretations o f traditional perspectives on
psychology can tend to become over-generalized and thus subjugating for parents and children.
From a positivist point of view, statistical knowledge about populations cannot be inferred to an
individual. This study has elaborated examples o f what happens when people over generalize
empirical knowledge. Particular elements and rich detail are missed and the full context is not

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understood. As an aside to this and to emphasize the point, I have met the child who “displayed
cruelty to animals”; she is not a psychopath.
Limitations o f the Study
This compilation o f parents’ stories is not intended to be representative o f the larger
population of parents with disabilities. In most qualitative studies, this lack o f generalizabilt}' is a
tradeoff for data which provides a greater depth o f perspective. In reviewing other qualitative
studies about positive adaptation (Bennett, DeLuca & Allen, 1996; Knoll, 1992; Trute & Hauch,
1988), however, many o f the descriptions in the current study suggest findings which are
qualitatively very similar. In any case, the purposes o f this study are exploratory and theoretical.
This research was designed to provide an interpretive rather than inferential body o f data.
Another limitation o f the study was that it did not include individuals who would have
difficulty sharing their experiences in this kind o f setting. This study is also limited by the fact that
it represents the stories o f parents willing to participate in a group setting. It also includes only
those stories parents felt comfortable in telling. Thus, there is the possibility that only the stories
o f articulate and outspoken individuals were heard. Certainly, it was the case that many o f the
parents were strong advocates and that they did tend to have more to say about critical aspects of
disability. To be sure, there were parents in each o f the groups who talked more than others.
What parents would have said in individual interviews might have been qualitatively very
different.
The geographic limitations in this study included that it was conducted in just two
communities in the interior o f British Columbia. To that end, the concerns o f parents may only
reflect the concerns o f parents living in northern communities. As most research is conducted in
large urban areas, the rural perspective is often ignored. In this respect, the demography o f the

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study is a strength as well as a limitation, in that it provides information useful in northern centres.
This study cannot make any inferences to the population o f parents o f children with
disabilities in general nor even to all parents living within the geographic area in which the study
takes place. The stories o f the parents in this study varied, but they were generally told from a
progressive and involved viewpoint. Parents were mostly from two-parent households, had
actively sought out and utilized a variety o f services and supports and were well educated and
middle class. In this respect, this study does not provide information that elaborates cross-cultural
perspectives or that includes the stories o f parents from a varied socio-economic backgrounds.
Another limitation o f the current study involves the lack o f contrasting perspectives.
Parents spoke a great deal about other people, particularly professionals. In presenting parents’
stories, inferences about other people’s assumptions are based on parents’ interpretations and are
not balanced by the perspective o f those individuals the parents mentioned. Although parents
tended to be especially negative about the medical and social welfare systems, their stories cannot
be viewed as evidence that these, service systems are in need o f radical reform. These systems and
their relationships to parents are highly complex. On the other hand, they do point out some
problems which might be the subject o f future, more thorough research.
Recommendations
In this section I make recommendations based on the analysis o f these interviews. I
address the areas o f counselling, professional education, and future research.
Counselling Parents o f Children with Disabilities

One o f the purposes o f this study was to inform counsellors about how to deal with
counselling situations involving parents o f children with disabilities. The following
recommendations are based on the narratives o f parents in this study.

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I f a counsellor has no experience with a family member with a disability, it is important for
him/her to acknowledge that he/she lacks experiential knowledge. Personal assumptions about
what it might be like are not the equivilent to having individual experience. Hanline’s (1991)
position that parental adaptation and coping is unique and individual is appropriate in this regard.
It is best to simply state that you do not know. In this respect, other parents o f children with
disabilities are often an effective source o f emotional and psychological support.
With some parents, counsellors ought to be prepared for contradictions. The development
o f new ideas about difference takes time. Parents’ stories in this study confirmed that their
individual experiences with positive adaptation varied considerably from time to time, particularly
when they encountered a barrier such as a lack o f disabled parking spots or another individual’s
essentialized description o f themselves or their child. I think it is very important for counsellors to
take a wider view o f the difficulties parents o f children with disabilities face and to be aware that
those difficulties are often systemic rather than a case o f individual inability to cope. Viewing
disability as a feature o f the disabling society means confronting both structural and ideological
barriers. Clearly, this represents an enormous stress on parents as those barriers continue to be
pervasive features o f mainstream society.
When dealing with issues o f a child’s behaviour, there is a context in which that behaviour
occurs and, without being in that context, a counsellor cannot be certain whether a strategy will
work or not. Therefore it is important to acknowledge the limits o f expertise and avoid rigid
prescriptions. Parents in this study also related that it is important to approach behavioural
situations with a caring and open-minded attitude. Related to this, written information or
assessment related to a child’s behaviour problems should be conveyed in such a way that parents
understand it in light o f their own experience. Behaviour management plans are not prescriptions

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with definitive outcomes; they are individual experiments that may or may not achieve a desired
result. If behavioural reports are written, professionals should review and discuss the content o f
those plans with the parents present.
Counsellors need to share information with parents and avoid the tendency to
underestimate parents’ ability to make sense o f information about disability. Having information
about their child’s impairment, available services and government policy initiatives was important
for these parents. Sharing o f information with parents acknowledges and validates their expertise
and begins to build a partnership. Many o f these parents’ stories also suggest that historical and
sociological information about disability issues was a key component in how they made sense o f a
child’s disability.
“Don’t say ‘no’ until you know it is ‘no’.” This may involve putting aside pre-conceived
notions about what is possible for individuals with particular types o f disabilities. Although some
things may not be possible, parents can discover these for themselves. Parents were clear in their
assessments o f how some professionals appear to impose limits through a static assessment o f
disability. Not saying no until you know it is no also needs to include the interests o f the child.
While this study did not explore in detail the intersection between parent and child interests, there
are probably some cases where parents’ desires are contrary to the child’s interests.
It is important for counsellors to recognize the value o f parent support groups and that,
for some parents, the counselling they get in such groups will be superior to what an individual
counsellor can provide. Many o f the parents also stated that their groups acted as a mechanism for
sharing and accessing practical information in regard to meeting their child’s needs. Interminable
frustrations with bureaucracy appears to underlie and augment the value o f support groups in this
regard. Parents’ stories suggest there may be vested political interests in maintaining the status

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quo o f social service bureaucracies. Collective action on the part o f parent advocacy groups
represents an important change to this status quo.
Counsellors and support people should listen to parents. While this is important in any
helping relationship, in issues involving disability there is a tendency to miss important details in
parent's narratives. Sometimes clinical agendas have a way of interfering with what parents
perceive as more important day to day issues. These balances may be difficult to achieve. In this
respect, I do not think counsellors have to denigrate the work o f rehabilitation professionals but
can validate parents questions and concerns with regard to achieving an appropriate balance.
Counsellors can help parents deconstruct assumptions from the dominant discourse that
are sources o f frustration and stress. They can look for those problems which can be externalized
and situated within dominant narratives about disability and being normal. It is also important to
validate parents’ alternative stories about themselves and their children. In particular, counsellors
need to pay attention to the value o f “de-medicalizing” and “de-awfiilizing” the experience o f
raising a child with disability. The fact that nearly all the parents in this study mentioned some
component o f dealing with other people’s “horrible pictures” suggests that parents continue to
have to deal with this taken-for-granted view o f disability.
Professional Education

The education and training o f professionals who work with individuals labelled with
disabilities has been dominated by the concept o f normalization. The deconstruction o f disability
suggests that there is a need to re-evaluate some o f the basic premises o f this model o f service
delivery. The education o f professionals needs to include views about normality from the
perspective o f individuals with disabilities as well as their families. Such education also needs to
lead professionals in training to question the idea that individuals with disabilities are valued if

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they are more like the majority.
The education o f professionals and para-professionals needs to focus on a deeper
discussion o f the social construction o f normality as well as disability. Professionals need to be
aware that this debate goes further than simply a debate about the correct language to use in
. referring to people with disabilities. To be sure, some o f the language coming out o f the disability
rights movement provokes societal concerns for correct language. Some people with disabilities
have begun to refer to themselves as “crips” while others have sought to rid the language o f the
patronizing term o f “challenged” (Shapiro, 1993).
With regard to terminologies, educational programs need to emphasize the difference
between language which identifies a condition o f impairment and language that essentializes or
labels. The distinction between impairment and disability is important. The well articulated
position that the condition o f functional difference becomes disabling when that difference is
viewed as tragic applies to many individuals with impairmer*s. In contrast, having an impairment
from a non-disabled perspective, becomes a case o f hopelessness. This tends to construct people’s
realities in one direction and ignores the possibility o f different outcomes. It should be cautioned
that the tragic narrative on disability is a very old story and deeply ingrained in cultural and
language practises, so that a ftill discussion o f this issue requires time and careful reflection.
Education, in this respect, is not just about the “correct” choice o f words; it involves looking at
how meaning has been negotiated historically and politically. In some cases, this brings to light
perhaps difficult and provocative issues like the example o f fascism mentioned earlier.
Professional education about disability need not avoid larger political questions.
While the education o f professionals working in the medical system may be more complex
and technical, there is a need to humanize and balance medical professionals’ views about physical

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and mental impairments. Inviting parents who have had positive experiences in raising children
with disabilities to be guest lecturers would be an excellent starting point.
Education needs to encompass a balanced view o f disability and should include both the
views o f individuals with disabilities and those o f their parents. Critical and deconstructed
definitions o f disability should be included in curricula for professionals and para-professionals
working with this population. The education o f professionals should also include the education o f
all professionals, and not just those working specifically in disability-related fields. An ideal
situation would be for all curricula in the helping professions (health care, social work, education
and psychology) to include a course in disability studies.
Future Research
This research project brought together three topics; evolving critical definitions o f
disability, narrative constructivist theories o f counselling, and the counselling and support o f
parents of children with disabilities. Research was exploratory and theoretical. It provided a
beginning qualitative evaluation o f several key principles within each area o f interest.
This study suggests possibilities for both practical and theoretical research. Practically, the
results of this study suggest narrative therapy strategies that could be used for counselling parents
o f children labelled with disabilities. It has deliniated, among others, the “problems” o f comparing
and horrible pictures. From a narrative therapy perspective, these are extemalizable problems
which can be deconstructed. Single case studies o f actual counselling interventions utilizing
externalizing and deconstructive questioning protocols would further elaborate this process,
possibly with different kinds o f problems.
Comparisons o f narrative approaches to alternate approaches to counselling would be
useful for elaborating the relative strengths o f narrative therapy with particular populations and in

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specific situations. Similarly, research could be designed that examines outcomes for parents who
receive counselling fi’om counsellors trained according to a more critical view o f disability. There
is also a need to examine whether differences in counselling approaches exist between counsellors
who have direct experiences with people with disabilities versus counsellors who have none.
Theoretically, similar studies such as the present one, need to be applied to professionals*
perceptions o f families, the perceptions o f children with disabilities and the perceptions o f their
siblings. The topic o f sibling relationships was raised in all three interviews and provides a good
starting point for a similar analysis. It would also be interesting to contrast similar data with the
views of parents of typical children on what they think it would be like to have a child labelled
with disabilities.
Above all, this study speaks to the general need to include the voices o f those being
studied in the research process. This inclusion provides a check on the tendency to essentialize the
experiences o f those who have been all too often objectified within other research paradigms.
Conclusion
This study began two years ago and was motivated by a particular story about a student
with disabilities and her parents. Because o f issues o f confidentiality, I cannot relate the details o f
that story. Suffice to say, it is not an example o f positive outcomes like many o f the stories in the
current study. A detail that I will relate is that this student asked me “why can’t my parents
understand that this is just the way God made me.” Two years later, I am still not sure that I can
answer her question, although I do think that this study has provided some insight into the depth
o f the problem.
The parents in this study were parents who found ways o f making sense o f disability which
I would describe as pioneering. It was not that long ago, after all, that institutions, segregated

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classrooms and restrictive service options were the norm in this province. I started working in the
field o f services for people with disabilities in 1984 during the final years o f exclusionary service
practises. I can recall people’s opposition to the changes towards inclusive schools and the move
o f residents out o f institutions into group homes in the community.
The parents in this study represent a new generation o f parents whose children have gone
to school in their own neighbourhoods, have participated in aspects o f the communities in which
they live and have lived at home with parents who love and accept them for who they are. These
children’s different stories have yet to be told. It is my hope that in years to come when their
stories are widely available, they may be able to provide a more compelling answer to my
student’s question. More importantly, I would hope that the question is less often asked.

158
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169
Appendix A Demographic Questionnaire for Focus Group Participants
Please take a minute to complete the following questionnaire. The following informatioa is requested in order to include
in the stucfy some descriptive information about participants. Please note that this does not require you to provide your
name. It will be included in the completed study as summary of characteristics of all participants.
1.In what age category do you belong?
( ) Under 25
025-34
035-44
045-60
O 60 or over
2-Are you
O Male?
( ) Female ?
3.Are you
O the biological parent of your child ?
O the adoptive parent of your child ?
( ) foster parent
( ) Other caregiver________________
4.1n what combined atmual family income category do
you belong?
O under $20,000
O $21,000 - 35,000
( ) $36,000 - 49,000
() $50,000-65,000
( ) $66,000 - 80,000
( ) $81,000 and over
5.How many children do you have including your child
with disabilities?____
6. What is the nature of your child’s impairment or
disability?
( ) Developmental delay or mental handicap
( ) Learning disability
( ) Physical disability or mobility impairment
( ) Hearing impairment
( ) Visual Impairment
( ) other________________________
7. Is your child’s impairment
( ) Congenital - apparent at birth
( ) Acquired - the result of an accident or illness after
birth
8. In the past have what kind of psychological
emotional supports(counselling) have you sought for
yourself?
( ) Services of a professional counsellor,
psychotherapist or therapist
( ) Supports offered by other professionals working

with your child ( ie - child development centre staff,
school teachers etc )
C ) Supports from family members
( ) Supports from friend
( ) Supports from other parents o f children labelled
with (h^bilities
( ) Have not sought psychological or emotional
supports
( ) Other________________________
9. What is your marital status?
C) married
( ) divorced/ separated
( ) widowed
O single
10. What do you consider best describes your ethnic
origin?
( ) European
( ) Indo-Canadian
( ) First Nations
( ) Chinese
( ) Other___________________
(specify)
11. What is the highest level of education you have
achieved
( ) Elementary school
( ) Some secondary school
( ) Secondary school graduation
( ) Some college or technical training
( ) Some university
( ) Bachelor’s degree
( ) Some Post graduate school
( ) Post graduate degree

170
Appendix B Summary Tables o f Demographic Data
Group

number o f parents

number of families

number o f children

Mill Town

5

4

4

Lakeville 1

7

5

5

Lakeville 2 (CDC)

3

3

6

12 families

15 children

n=

Type of disability

total
15 parents
Table 5 - Summary o f the three groups
n=

P aren t type

Age o f children

n=

foster parents

1

preschool 0-5

5

developmental

8

adoptive parents

2

elementary 6-12

5

physical

4

biological parents

12

secondary 13-18

2

learning

3

adults 19+

3

(multiple)

(4)

15
15
totals
Table 6 - Type o f parent, age o f children, type o f disability

parent gender

n=

marital status of
parents

n=

15

n=

family income

fathers

3

married

13

under 20, 000

2

mothers

12

single

1

21-35,000

2

widowed

1

36- 49,000

1

50-65,000

6

66-80,000

1

15
15
Table 7 - Parents’ gender, martial status, family income

12

171

parents’
education

n=

n=

age o f parents

Child Gender

n

Secondary grad

2

25-34

2

female

10

Some college

8

35-44

7

male

5

Some university

4

45-60

4

Bachelors degree

1

60 +

2

15
totals
Table S Parents' education, age and child’s gender
n=

num ber of other
siblings

15

15

n=

prior experience
with counselling

n=

ethnicity

0

1

trained counsellor

4

European/Canadian

13

1

6

other professionals

11

Asian

2

2

4

family & friends

11

3 or more

1

other parents

10

none

2

n/a
15
total
Table 9 - Number o f siblings, parents’ prior experience with counselling and ethnicity

15

172
Appendix C

Focus Group Interview Guide

Set-up - ensure all equipment and room is set up and ready for participants. Participant will each
have name tags (first names only). Cofifee and snacks will be provided
W arm -up
Introductions - before we begin I wonder if I could take a minute to get to know everyone
here. Could you all tell me something about yourselves and try to think o f something that
will help me remember your name?
Overview and establishm ent of some discussion guidelines
The reason I am here today is to ask you some questions about your experiences in raising
a child who has been given a label o f disability and to discuss some o f the ways you and
your families have learned to adapt to the situation. Before I start the interview, I should
probably point out a few things about the study. This is a study o f interest to counsellors
and other professionals who are in a position to help and support parents o f children with
disabilities. While I am a student in counselling, my primary purpose today is not to
provide counselling to you but to gather information for a study. If people find that certain
issues are difficult to tadk about and that you require some emotional support I would ask
that we find a way as group to deal with that after the session is over. I appreciate that to
share your personal stories may cause some discomfort and I truly appreciate your
willingness to share as openly as you feel comfortable with. I’d like to stress that I will not
push you to share issues beyond your own level o f comfort.
Explain presence o f co-moderator( note taker, observer); review that session will
be taped and ask if people have questions particularly with regard to any issues
mentioned in the letter o f informed consent - risks, benefits, confidentiality, issues
related to audio taping. Encourage if necessary concerns with regard to identifying
characteristics o f child or previous relationship with moderator in another
professional role.
Focus 1 ( general description of issues in raising a child with disabilities)
QUESTION; I would like to begin by asking everyone to share their experiences in raising a child
with disabilities.
What has been your experience in raising a child labelled with disabilities?

<moderator listens, reflects and clarifies points>
<co-moderator during this time notes general themes>
Focus 2 ( externalization of the problems)
POSSIBLE DIALOGUE : Thank you for sharing those stories. I ’d like to take a moment to just
summarize some o f the things you’ve talked about particularly the kinds o f challenges or problems
you have faced and are currently facing. What I would like to do is to give the problems a name
and to pick what the group sees as the three most relevant or important issues. My co-moderator
is going to help out by writing them down.
< moderator leads discussion> <co-moderator records on flip chart>

173
Focus 3 (deconstnictive questioning)
Ask specific questions about the problems parents identify when appropriate .

<the moderator uses deconstructive questions to elicit parents stories about haw they have
related to or changed the problem in their lives
< the co-moderator assists by re-directing moderator back to deconstructive questions>
'

Deconstructive questions : ( these are a general guideline and can vary depending on the problem
being discussed)
How has [the problem] affected you in the past and how has your relationship to [the problem]
changed?
How do you think other people’s ideas about how [theproblem^ is supposed to effect parents o f
children with disabilities strengthens its position?
When [the problem^ came into your life how did it take over?
How did you finally defeat [the problem^}

174
Appendix D Copy o f Informed Consent
Date, 1997
To Whom it May Concern;
As a graduate student at the University o f Northern British Columbia. I am conducting research on the implications o f
critical and constructivist theory for the practise o f counselling and support o f parents o f children with disabilities. Findings from this
research will assist counsellors and other helping professionals in their understanding o f the unique sensitivities required in working
with families where a child has disabilities.
I would like you to participate in my research study titled "Telling a Diilerent Story: Implications o f Constructivist Theory
for the Counselling o f Parents o f Children Labelled with Disabilities”. The goal o f this research is to elicit the parents’ stories o f their
experiences in raising a child with a disability with particular attention to issues which arise from emerging theoretical perspectives
within the fields o f counselling and disability studies. Briefly these issues touch on but are not limited to, assumptions and stereotypes
about your experience as parents, the influence o f professional service systems, the social "meaning " o f disability^ and your own
perceptions about the need for counselling and support
If you agree to participate in the study you will participate in a focus group session with 4>S other parents o f children with
disabilities whom are already members o f your current group. Each session will last approximately 90 minutes. You will be asked to
describe your family’s experience and to participate in a small group dialogue on issues such as those mentioned above, a focus group
method o f research is a semi- structured group interview with the added dimension o f a group discussion.
There are potential benefits in your participation. Group dialogue can have therapeutic benefit for individuals whose
experience is similar. Your participation may reaffirm your commitment to your children and assist you in clarifying your strengths as
a parent o f a child with a disability. You also have a chance to contribute to improvement in professional practise as it is a goal o f this
study to define" best practises" as defined by those individuals who are in a position to receive services. This study works from the
perspective that parents are experts in their own needs for counselling and support, a copy o f the final study will k made available to
each focus group cohort for your perusal.
There are are also potential risks to participation in a study o f this nature. These include the chance that the experience may
be emotionally draining or upsetting, that you may not feel entirely comfortable in sharing issues in this setting and that you may not
have shared certain o f your experiences with others in your group which may subsequently alter your relationships with them. The
interview also requires your time. In order to minimize these risks the following safeguards are in place: You are free to withdraw
from the study at any time. You will not be pushed to share anything that causes you to feel uncomfortable. I f issues do emerge which
prove troublesome post session de-briefing will be provided and if necessary assistance with a referral to counselling. The interview
session will be time limited. I will endeavour to keep within the 90 minute time allotment and will not continue past two hours.
You should be aware that the focus group sessions, while they may have a therapeutic benefit, are not intended to be group
counselling sessions. If, as a result o f this study, you and other participants identify a need for a continuing or additional support I will
ensure that this information is shared with appropriate agencies in the community. It is important to understand that my primary role is
as a researcher and not a counsellor
Participation in the study is completely voluntary and you will be free to refuse or stop at any time without penalty. All fbcus
group sessions will be audio-recorded for the purposes o f transcription. Your identity, your child’s as well as any identifying
characteristics o f your child will be kept strictly confidential, a pseudonym will be used for you and your child for the purposes o f
transcription. The actual tapes will only be heard by myself, my co-moderator, my advisor and a transcriber who will have access to
the tapes only as long as it takes to transcribe them. Once transcribed the tapes will be erased.
If you have any concerns or require further information, please feel free to contact the following:
Jay Goddard
Lakeville, B.C.
Phone : 989-1170

Ron Lehr. PhD
Faculty o f Health and Human Sciences
University o f Northern British Columbia
Phone : 960-5572

Please read the following paragraph, and, if you agree to participate, please sign below.
I agree to participate in the research study as described above . I understand that any information about me or my child
obtained from this research will be kept strictly confidential. I further understand that I can withdraw from this research at any time
without penalty.
Signature__________________________________ Date__________________
Investigator________________________________ Date__________________
Please place your initials here acknowledging receipt o f a copy o f this consent form.

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Appendix E - Dependability Check
Dependability Check
The criteria for determining whether a statement reflects deconstruction is as follows:
1) The statement questioned or dismissed what is offered as legitimate knowledge and
was perceived by the narrator as a cultural value or assumption,
2) The statement appealed to individual validity o f interpretation rather than '^widely held
beliefs”,
3) The statement pointed directly to a contradiction with taken-for-granted assumptions
about the nature o f the phenomena in question
4) The statements contextualizes or refl-ames the issue.
5) The statement or passage identifies a subjugating cultural discourse
Examples:. Examples o f deconstructive statements:
tragedy is in the eye o f the beholder,
it’s okay to be disabled,
you are allowed to feel whatever you feel.
Examples of Non-deconstructive statements or ideas include:
What parent does not wish that their child could be normal?,
the tragedy o f having a defective child,
a pattern o f feelings and responding.
Cultural assumptions and values about disability and being the parents o f a disabled child:
Disability represents a condition o f pathology - It is a disease, defect or abnormality.
Parents of children with disabilities experience inordinate amounts o f grief and stress.

In stru c tio n s - Read the statement. Circle the number(s) o f criteria you think apply. Underline
key sentence or phrases and add brief comments which you. If you think none o f the criteria apply
to the statement do not circle anything and write non-deconstructive.
The first statement is completed as an example