TINY SPECKS IN MICROSCOPES:
THE IMPACT OF HUMAN SERVICE WORKERS ON THE LIVES OF
PARENTS WITH INTELLECTUAL DISABILITIES
by
Jacqueline Harper
B.A., The University ofVictoria, 1986
B.S.W., The University ofBritish Columbia, 1991

THESIS SUBMITTED IN PARTIAL FULFILLMENT OF
THE REQUIREMENTS FOR THE DEGREE OF
MASTER OF SOCIAL WORK

©Jacqueline Harper, 1997

•

THE UNIVERSITY OF NORTHERN BRITISH COLUMBIA
April1997
All rights reserved. This work may not be
reproduced in whole or in part, by photocopy or
other means, without the permission of the author.

UNfVERS]T\'" OF NO}'frHEfiN
BRITISH COLUMBIA
LIBRt\RV
Prince Georya. BC

Tiny Specks in Microscopes

3

Abstract

This exploratory study used grounded theory methodology to examine the
interactions between human service workers and parents with intellectual
disabilities. Seven in-depth interviews were conducted with 3 parents. These
parents were all receiving voluntary, formal support services. The findings of this
study indicated that parents recognized that they needed voluntary, formal support
services to manage some aspects of their lives. Other findings indicated, however,
that support was not always viewed as being beneficial. Human service workers
were often perceived as social control officers. A number of mechanisms such as
coercion and blaming were used to maintain social control. The social control
parents experienced led them to feel a sense of hopelessness about their situations
which resulted in parents inventing new ways to adjust or adapt to their situations.

Tiny Specks in Microscopes

4

Table of Contents
APPROVAL ................................................................................................................ 2
ABSTRACT ................................................................................................................ 3
TABLE OF CONTENTS ............. ................................................................................... 4
LIST OF FIGURES ....................................................................................................... 6
ACKNOWLEDGMENTS ................................................................................................ 7
CHAPTER 1 ................................................................................................................ 8

Introduction .......................................................................................................... 8
The Preindustrial Era to Industrialization ............................................................. 9
Social Darwinism ................. .............................................................................. 10
Eugenics: Improving the Human Species ........................................................... 11
A Summary of Henry Goddard's 1912 Study called "The Kallikak Family" .... 12
The Enactment of Sterilization Legislation in British Columbia ....................... 14
Changing Attitudes Toward People with Intellectual Disabilities ..................... 19
Purpose of the Research .......................................................... ............................ 23

CHAPTER 2 .............................................................................................................. 25

Methodology ....................................................................................................... 25
Method ............................... ~ ................................................................................ 26
Procedure ......................................................................................................... 26
Identifying and Selecting Participants ........................................................ .26
Initial Telephone Contact ............................................................................. 27
Second Telephone Contact .......................................................................... 27
First Meeting ................................................................................................ 28
Preparation for Interviews ........................................... ........ ......................... 28
Data Collection Method .................................................................................. 29
In-Depth Interviews: Number of Participants Interviewed .......................... 29
Interviews ..................................................................................................... 30
Structure ofinterviews ................................................................................. 30
Taping .......................................................................................................... 31
Transcriptions ........................ ..................................................... ... ..... ......... 31
Data Analysis ....................................................................... ......... ............... 33

CHAPTER 3 ........ ............................... ....................................................................... 38

Findings .............................................................................................................. 38
Recognize Need for Support ........................................................................... 39

Tiny Specks in Microscopes

5

Social Control .............................................................................................. 41
Maintaining Social Control ............................................................................ .44
Hearing through the Grapevines ................................................................. .44
Coercive Interventions ................................................................................. 45
Power and Control ....................................................................................... 4 7
Blrune the Victim ......................................................................................... 49
Victims Blruning Themselves ...................................................................... 50
Powerlessness .............................................................................................. 51
Adapting: Parents' Survival Tactics ................................................................ 53
Summary ......................................................................................................... 54
CHAPTER 4 ..............................................................................................................55

Under the Microscope ...................................... ;.................................................. 55

CHAPTER 5 ..............................................................................................................68

Conclusions ........................................................................................................ 68
Limitations of the Study ..................................................................................... 73
Suggestions for Future Research ........................................................................ 75

REFERENCES .......... ·····............................................................................................ 77

Tiny Specks in Microscopes

6

List of Figures

FIGURE 1. TRANSCRIPTION CONVENTIONS FROM A SAMPLE OF THE
TRANSCRIPTS.

II II I

II II II Ill II II .... II II II II II II II II II II II II II

!It

II II II I

II IIIII II II II II I

II II II II I

I

...

31

FIGURE 2. SAMPLE OF CODING AND TRANSCRIPT ................................................... 33
FIGURE 3. SUBCATEGORIES AND DEFINITIONS ....................................................... 34
FIGURE 4. CATEGORIES AND DEFINITIONS ............................................................. 34
FIGURE 5. LINKAGES BETWEEN THE RAW DATA, SUBCATEGORIES AND
CATEGORIES. !Ill

II II II I

II II IIIII II

!!ttl!

II II II II II II

!Ill""""""'

Ill II II Ill II Ill II I

FIGURE 6. THEORETICAL FRAMEWORK !Ill .................................
II

II II

I I " " " " " II

!Ill

I

II II ..

36

!!ll!!ttttttt3 7

Tiny Specks in Microscopes

7

Acknowledgments

I wish to first express my sincere thanks to the parents who participated in
this research. These parents welcomed me into their homes and graciously shared
their experiences with me. I also wish to thank Dr. Gordon Temowetsky, Dr.
Anne Lindsay and Professor Glen Schmidt for their advice, guidance and patience
in the preparation of this thesis.
I would also like to mention the staff at the Ministry for Children and
Families for their assistance and support.
A special thanks to my husband for his love, support, thoughtfulness and
encouragement to finish this project. Finally, I would like to thank my family and
friends for their understanding and ongoing help and encouragement.

Tiny Specks in Microscopes

8

Chapter 1
Introduction

This thesis will explore the impact of human service workers on the lives
of parents with intellectual disabilities. To fully appreciate how human service
workers impact the lives of parents with mental disabilities it is necessary to
develop an understanding of the wider society and how it has influenced and
continues to influence our values, attitudes, and practices towards people with
intellectual disabilities. To achieve this objective, a step back in time is warranted
as remnants of our not too distant past are reflected in our current practices.
This chapter will first discuss the changes in western societies from the
preindustrial era to industrialization. This discussion will specifically deal with
changes as they relate to people with disabilities. This chapter will then describe
Social Darwinism and Eugenic theories because they were instrumental in
influencing social policy concerning people with mental handicaps during the
nineteenth and twentieth century. It will also briefly summarize a study conducted
in the early 1900s by the American psychologist Henry Goddard. The reasons for
citing this particular study are twofold: first, the study provides an excellent
illustration of society's fears and attitudes toward individuals with disabilities
during that period; and secondly, it was considered famous in its time. This fame
served to reinforce, and perhaps escalate, North Americans' fears toward people
with intellectual disabilities. In addition, a brief history will be provided regarding
the sterilization of people with mental handicaps including some of the events

Tiny Specks in Microscopes

9

leading to the enactment of sexual sterilization legislation in British Columbia in
1933 . Following this discussion, some ofthe factors contributing to the public's
change in attitudes and practices toward people with intellectual disabilities will
be outlined. Finally, the purpose for this research will be discussed.
The Preindustrial Era to Industrialization
Western societies in the preindustrial era were structured in such a way
that they did not prohibit most people with mild or moderate mental handicaps
from participating in the agricultural, home-based work that needed to be done
(Abbott & Sapsford, 1988). The way in which work was organized, however,
changed dramatically during the industrial revolution and had negative
implications for people with disabilities. For instance, people were hired to work
in factories in urban centers. This type of work required 'disciplined individuals'
(Abbott & Sapsford, 1988) and certain skills such as the ability to follow
directions and meet production deadlines. Those individuals who were unable or
unwilling to meet the demands of this changing work environment were excluded
from participating in the work force (Oliver, 1990). Furthermore, individuals who
did not conform to this new society, for whatever reasons, were seen as a social
problem.
Abbott & Sapsford (1988) note that it was during the move from a rural,
agricultural based economy to industrial capitalism when people with mental
handicaps were defined "as a distinct and serious ' problem class"' (p.l4). They
also note that the way in which the mentally handicapped were perceived and

Tiny Specks in Microscopes 10

treated during that period and into the twentieth century can be attributed to the
development of two theories. These theories are Social Darwinism and Eugenics.
Social Darwinism
Social Darwinism was developed by the philosopher Herbert Spencer in
the late nineteenth century (Abercrombie, Hill, & Turner, 1988). Spencer' s Social
Darwinism was drawn from Darwin's Theory ofEvolution (Chase, 1977) and it
operated from two central premises.
(1) There are underlying, and largely irresistible, forces acting in societies
which are like the natural forces which operate in animal and plant
communities. One can therefore formulate social laws similar to natural ones.
(2) These social forces are of such a kind as to produce evolutionary progress
through the natural conflicts between social groups. The best adapted and
most successful social groups survive these conflicts, raising the evolutionary
level of society generally ('the survival of the fittest'). (Abercrombie et al.,
1988, p. 225).
In summary, Spencer's theory suggested that the weaker members of society
would be weeded out through natural forces and over time the human race would
become more superior.
According to Abbott & Sapsford (1988) it was Spencer's ideas that were at
the forefront of the Eugenics Movement. And it seems from Abbott & Sapsford's
account of these events that it was the combination of the two forces, Social
Darwinism and Eugenics, which shaped the larger society's attitudes toward
people with intellectual disabilities. They add that Eugenics had a profound affect
on the development of social policy concerning people with mental handicaps at
the tum of the twentieth century.

Tiny Specks in Microscopes 11

Eugenics: Improving the Human Species

Eugenics was developed in England in 1883 by Francis Galton
(Abercrombie et al. , 1988; Kevles, 1985). Galton' s theory was that the human
race could be improved by implementing measures to increase the number of
offspring of the ' fittest' members of society while reducing or eliminating
altogether the number of offspring of the 'unfit' (Kevles, 1985; Chase, 1977). His
ideas were based on the premise that all human traits, including such things as
intelligence, musical ability, poverty, prostitution, criminality and alcoholism
were inherited (Kevles, 1985). His ideas had profound implications for the
treatment of those labeled by society as 'feeble-minded' .
The Eugenicists in the early 1900s targeted the feeble-minded as a threat
to society (Abbott & Sapsford, 1988; Scheerenberger, 1983 ; Chase, 1977). They
were blamed for many of the social problems during that period which included
poverty, criminality, prostitution, and venereal disease ( McLaren, 1990;
Institute of Law Research & Reform: Alberta, 1988). Eugenicists were concerned
that the feeble-minded could be mistaken for 'normal' thereby transmitting their
undesirable traits to their offspring which would eventually lead to the
degeneration of the human race (Goddard, 1973).
The types of social policies arising from these ideas at that time were
segregation and sterilization. One highly regarded study conducted in the early
1900s by Goddard ( 1912) demonstrated how "bad" traits and "good" traits were
passed on from generation to generation. This work escalated public fears toward

Tiny Specks in Microscopes 12

the feeble-minded and likely instilled a sense of urgency to deal with the problem.
The following section summarizes this study.
A Summary of Henry Goddard's 1912 Study called "The Kallikak Family"

Henry Goddard, the American Psychologist and Eugenicist conducted a
study on Deborah Kallikak and her ancestors (Goddard, 1973). Deborah, the
subject of the study, was a twenty-two year old woman who resided at The
Training School for Backward and Feeble-minded Children in Vineland, New
Jersey. Goddard and his assistants traced Deborah' s ancestry back six generations
and found that Deborah had a great-great grandfather named Martin Kallikak.
They also found that another Martin Kallikak existed who was a generation older
than Deborah's great-great grandfather. This older Kallikak is referred to in the
study as Martin Kallikak Senior. As Goddard and his research assistants examined
Martin Kallikak Senior's life more closely they pieced together information
indicating that Martin Kallikak Senior, when he was just a young man, met a
feeble-minded woman in a bar and they had a feeble-minded son out of wedlock.
That son was named Martin Kallikak Junior; Deborah's great- great grandfather.

It was determined by Goddard (1973) and his assistants that Martin
Kallikak Senior later ' smartened up' and married a ' decent' woman from a decent
family. The two sides of the family, the Martin Kallikak Junior "bad" side and
the Martin Kallikak Senior "good" side, were compared and the following
conclusions were reached.

Tiny Specks in Microscopes 13

Goddard found that from Martin Kallikak Junior's bad side of the family
there were four hundred and eighty descendants. Apparently, one hundred and
forty-three ofthem were found to be feeble-minded while forty-six were
reportedly normal. Goddard does not appear to comment on the status of the
remaining two hundred and ninety-one descendants. He does note, however, that
of the total number of descendants, it was determined that thirty-six were
"illegitimate," thirty were "sexually immoral," twenty-four were "alcoholics,"
three were "epileptics," three were criminals, eighty-two "died in infancy" and
"eight kept houses of ill fame" (Goddard, 1973, pp. 17-19) .
Goddard also found that from Martin Kallikak Senior's good side of the
family there were four hundred and ninety-six descendants. All of these
descendants were reportedly "normal," although a few were described as alcoholic
and one was referred to as "sexually loose." The descendants from this good side
of the family reportedly all did well for themselves, holding such esteemed
positions as educators, judges and lawyers (Goddard, 1973, pp. 29-30).
Goddard (1973) makes the following observations about the research
findings in the chapter of the study titled "What Is To Be Done?".
No one interested in the progress of civilization can contemplate the facts
presented in the previous chapters without having the question arise, Why
isn't something done about this? It will be more to the point if we put the
question, Why do we not do something about it? We are thus face to face with
the problem in a practical way and we ask ourselves the next question, What
can we do? For the low-grade idiot, the loathsome unfortunate that may be
seen in our institutions, some have proposed the lethal chamber. But humanity
is steadily tending away from the possibility of that method, and there is no
probability that it will ever be practiced.
But in view of such conditions as are shown in the defective side of the
Kallikak family, we begin to realize that the idiot is not our greatest problem.

Tiny Specks in Microscopes 14

He is indeed loathsome; he is somewhat difficult to take care of; nevertheless,
he lives his life and is done. He does not continue the race with a line of
children like himself. Because of his very low-grade condition, he never
becomes a parent.
It is the moron [or feeble-minded] type that makes for us our great
problem. And we face the question, "What is to be done with them - with such
people as make up a large proportion of the bad side of the Kallikak family?"
we realize that we have a huge problem. (Goddard, 1973, pp. 101-102).
As illustrated by this quote, this study reinforced and scientifically
substantiated, that bad traits were passed on from one generation to the next and
that the feeble-minded were a group of people to be feared.
Despite later criticisms of Goddard's study and Eugenics theories in
general, this information instilled fears in the public toward the feeble-minded.
Such fears led to the implementation of sterilization legislation in the United
States and Canada in the 1900s. Thirty states in America enacted such legislation
(Chase, 1977) as well as two provinces in Canada; British Columbia and Alberta
(McLaren, 1990).
The Enactment of Sterilization Legislation in British Columbia
McLaren (1990) in his book titled Our Own Master Race:

~

in

Canada. 1885-1945 outlines in the chapter "Creating a Haven for Human
Thoroughbreds" (pp. 89-1 06), some of the events leading to the implementation
of the "Sexual Sterilization Act" in British Columbia. A few of these events will
be summarized because they shed light on the debates that took place in the early
1900s around this issue.

Tiny Specks in Microscopes

15

McLaren (1990) writes that a "Royal Commission on Mental Hygiene"
was established to look into the state of Mental Retardation in British Columbia in
1925. There were three reasons for the establishment of the Commission. First,
there were concerns that mental disorders had significantly increased in British
Columbia. Second, it was generally believed that British Columbia was attracting
"foreign misfits." Third, there were concerns regarding British Columbia's ability
to continue to foot the bill for segregation.
In addition to determining whether the number of people afflicted with
mental disorders had increased; and whether foreigners with mental disorders
were in fact choosing to live in British Columbia, the Commission had the
important tasks of investigating how to prevent mental disorders and how to
provide better care to the feeble-minded. Sterilization was one of the suggestions
provided to the Commission for preventing mental disorders.
McLaren (1990) outlines three central arguments presented to the
Commission in support of sterilization as a preventative measure. These
arguments are based on economic, hereditary and moral factors. The first
argument raised was how much it was costing British Columbia to keep people in
institutions. Sterilization was presented as a cost cutting measure. Surgical
intervention would prohibit reproduction of the feeble-minded thereby reducing
institutional costs by safely allowing some "inmates" to be released into the
community.

Tiny Specks in Microscopes 16

The fear of undesirable traits being passed on from one generation to
another, as well as the belief that the feeble-minded were more fertile than the
'average' citizen formed the basis of the second argument. Sterilization, it
seemed, offered one way of ridding society of' defective' individuals who would
likely produce children with the same undesirable traits. Some argued that not all
feeble-minded individuals would produce defective offspring. They were
reminded, however, that feeble-minded parents would be unable to properly care
for their children and should not be permitted to have them.
The final argument supporting sterilization legislation was based on moral
convictions. Some viewed sterilization as a justified form of punishment whereas
others equated implementation of the policy with freedom. For example,
institutionalized individuals agreeing to the surgical intervention could leave
asylums and get married without posing a threat to the health and well-being of
the greater society.
Based on all the information gathered by the Commission, a decision was
made in the Royal Commission's 1927 report to support the sterilization of
institutionalized people who would be eligible for release into the community
(McLaren, 1990). One ofthe reasons that the report's recommendations were not
implemented until1933 was the need to ensure that the majority ofBritish
Colombians would support the proposed sterilization policy. Apparently the
Vancouver Sun played a role in disseminating information to the public
concerning the benefits of sterilization. McLaren ( 1990) states that the Vancouver

Tiny Specks in Microscopes 17

fum ran a number of articles written by Emily Murphy, a supporter of
sterilization, who assisted Alberta in its sterilization campaign. The fum also
supported United States Supreme Court Justice Holmes' s decision in the case of
Buck vs. Bell.
Carrie Buck was an eighteen year old woman who lived in an institution
for Epileptics and the Feeble-minded in the state of Virginia (Chase, 1977). She
had an illegitimate child while in the institution and, it seems, this is the reason
why she was selected as a candidate for sterilization under the newly instituted
Virginian compulsory sterilization law. Under the newly formed law, the
superintendent of an institution had the power to ask a Eugenics Board for the
permission to sterilize "inmates"(Reilly, 1991 ).
The Superintendent of Carrie Buck's institution petitioned the Eugenics
Board for permission to sterilize Carrie. This was based on the grounds that she
might bear more children like herself (Reilly, 1991 ). A young lawyer who had
been appointed Carrie' s guardian, however, appealed the Board's decision and
took the case all the way to the Supreme Court (Reilly, 1991). In 1927 the final
decision concerning Carrie' s fate was made by Supreme Court Justice Oliver
Wendall Holmes. In his judgment he wrote:
It is better for all the world, if instead of waiting to execute degenerate
offspring for crime, or let them starve for their imbecility, society can prevent
those who are manifestly unfit from continuing their kind. The principle that
sustains compulsory vaccination is broad enough to cover cutting the
Fallopian tubes. (Reilly, 1991 , p. 87).

Tiny Specks in Microscopes 18

This judgment further reinforced the justification for sterilization
legislation and inspired other states to introduce such measures (Reilly, 1991).
The V ancouyer Sun's editorialist supported the idea and suggested that Canada
should follow the United State's lead (McLaren, 1990). Although there was some
opposition to the bill, particularly by Catholics, "An Act Respecting Sexual
Sterilization" was proclaimed in British Columbia on April 7, 1933 (McLaren,
1990; Sexual Sterilization Act, 1933).
The Act allowed the Superintendent of a public hospital for the insane to
decide whether an "inmate" of that institution should be referred to the Board of
Eugenics (Sexual Sterilization Act, 1933). Referrals to the Board were based on
whether the Superintendent felt an inmate, once discharged from the institution,
would likely have children with mental deficiencies (Sexual Sterilization Act,
1933). Upon receiving such a referral from the Superintendent, it was the Board's
job to examine the inmate in order to assess whether he or she "would be likely to
produce children who by reason of inheritance would have the tendency to serious
mental disease or mental deficiencies." (Sexual Sterilization Act, 1933, p. 200). If
the Board determined that there was a risk that an inmate would produce deficient
offspring, sterilization was recommended.
Unlike compulsory sterilization laws introduced in the United States,
before such an operation could be performed in British Columbia, the inmate was
required to provide written consent. If it was determined that an inmate was
incapable of authorizing consent, it was the Board of Eugenics' responsibility to

Tiny Specks in Microscopes

19

obtain written consent from a spouse, parent, guardian or the Provincial Secretary
(Sexual Sterilization Act, 1933). The operation could not be performed without
the required consent (Sexual Sterilization Act, 193 3).
The sexual Sterilization Act remained on British Columbia's statutes for
40 years. It was repealed in 1973. The Minister of Health Services in British
Columbia at that time introduced Bill No. 45, "Sexual Sterilization Act Repeal
Act", in the Legislative Assembly on March 29, 1973. Discussion around the
repeal ofthe Act commenced on AprilS, 1973. At that time the Minister of Health
Services stated:
In the past 10 years, there have been very, very, few calls for the use of the
eugenics committee that was set up. We find it quite archaic to provide for
sexual sterilization of people who are in mental institutions.
Not only that, Mr. Speaker, it provided for sterilization of people who
were in boys' industrial schools, girls' industrial schools and that type of
situation. The people in our health department and the people in the
professions feel that it was most archaic (British Columbia Legislative
Assembly Debates, 1973, p. 2298).
Following this discussion, A decision was made in the Legislative
Assembly to pass Bill No. 45 on April 13, 1973 (British Columbia Legislative
Debates, 1973). The Sexual Sterilization Act remained in force in British
Columbia for most of the twentieth century, even though society was beginning to
question Eugenics theories as early as 1940.

Changing Attitudes Toward People with Intellectual Disabilities
For the most part societal attitudes toward people with disabilities began
to change around the Second World War when the effects ofNazism came to light

Tiny Specks in Microscopes 20

(Abbott & Sapsford, 1988; McLaren, 1990). After the public learned that
sterilization of people with disabilities led to their eventual extermination in
Germany, professionals began to dissociate themselves from eugenic policies
(McLaren, 1990). In addition, there was considerable opposition to sterilization
from Catholics and 48% of Canadian citizens were Catholic (McLaren, 1990).
Also in the early post-war period, knowledge about genetics was
becoming more sophisticated. Scientists began to question the validity of eugenics
(McLaren, 1990). The middle class placed less blame on individuals for social
problems and there was some recognition that people require assistance to survive
in an unpredictable, industrialized market economy (McLaren, 1990).
It was not until the 1970s, however, that a major shift in Canada occurred

toward providing care to people with disabilities. Lord and Hearn (1987) in their
study of deinstitutionalization identified five social trends prevalent in the 1970s
and 1980s that precipitated the closure of institutions for people with intellectual
disabilities in Canada (pp. 3-4).
The first social trend identified is the human rights movement. They point
out that the Canadian Charter of Rights and Freedoms was proclaimed in 1982
which led to increased public awareness concerning discrimination towards
people with disabilities.
Secondly, during the early 1970s scholars began to publish on the effect of
institutional living. This body of knowledge was used by advocates to promote
community living. Thirdly, those in the position to create change were becoming

Tiny Specks in Microscopes 21

more knowledgeable about the process of deinstitutionalization and about serving
people with disabilities in their own communities. Fourthly, economics was a
concern. Due to the high costs involved in operating institutions, it was generally
believed that services to people with disabilities could be provided more cheaply
in the community.
Finally, the principle of normalization was increasingly popular in
designing services for people with disabilities in North America (Dalley, 1992;
Lord & Hearn, 1982). The principle of normalization first originated in Denmark
in the 1950s (Dalley, 1992). Its primary objective was to ensure that people with
disabilities enjoyed the same rights and opportunities as nondisabled citizens
(Dalley, 1992). This definition was apparently later expanded upon by Wolf
Wolfensburger in the United States in the 1970s (Dalley, 1992). According to
Dalley (1992) at that time "Wolfensberger defined normalization as the
'utilization of means which are as culturally normative as possible, in order to
establish and/or maintain personal behavior and characteristics which are as
culturally normative as possible"' (p. 101). Dalley comments on this definition
stating that" it implies an acceptance of the status quo (which is governed by the
dominant ideology) and a conservative unwillingness to challenge existing
norms" (p. 103).
Although there has been considerable debate around the North American
definition of normalization in that it maintains the status quo, fulfills the interests
of the dominant society at the expense of the individual, and stresses conformity

Tiny Specks in Microscopes 22

rather than individual differences (Dalley, 1992), it was nevertheless, instrumental
in changing society's attitudes concerning how care is provided to people with
intellectual disabilities.
People are no longer segregated from the larger society by the ominous
walls of the institution because of eugenic fears. They are living and working in
the community as well as marrying and becoming parents. The question that now
arises is whether these parents can adequately care for their children (Booth &
Booth, 1994a).
Espe-Sherwindt & Crable (1993) state that there is "no direct correlation
between a higher IQ and 'better' parenting" (p. 157). They note, however, that
there are seven factors which may be valuable in identifying those parents with
intellectual disabilities who will perhaps have a greater likelihood of being
successful. These include having an IQ of over 50, having a spouse, raising fewer
children, having an adequate income, having a support network, and being willing
to accept the support that is offered. It is important to note that support may be
provided through both formal and informal networks.
In fact whether parents receive adequate support seems to be an important
factor in determining whether their children are apprehended. Booth & Booth
(1994a) state, "that families whose children were removed permanently typically
had only limited support, lost their support at a crucial time, or were viewed as
incompetent by key figures within their support system" (p. 30). Because
adequate support and the willingness to accept support have been identified as

Tiny Specks in Microscopes 23

important factors in keeping parents with intellectual disabilities and their
children together, it is necessary to determine how service affects these parents'
lives.
Purpose of the Research
This study will focus on the impact of formal support systems as they play
a significant role in assisting parents with intellectual disabilities. For example,
Espe-Sherwindt & Crable (1993) observe "that many parents with mental
retardation continue to find themselves controlled by the expectations and
guidelines of the multiple agencies involved with them and their young children"
(p. 60).

The purpose of this research, then, is to explore how human service
workers impact the lives of parents with intellectual disabilities. Are they
perceived by these parents to be a help or a hindrance?
To answer the research question, parents with intellectual disabilities who
receive services from the Ministry of Social Services, Services to People with
Mental Handicaps (now known as the Ministry for Children and Families) will be
interviewed.
Additional terms used in the study that require clarification are human service
workers and the word "impact". Human service workers are defined as social
workers, homemakers, life skill workers, family support workers, daycare workers
and physicians. These professionals and paraprofessionals are included under the
human service worker definition because these are the people participants

Tiny Specks in Microscopes 24

mentioned during the interviews. The word "impact" will be defined by such
concepts as intrusiveness, control, and power. Grounded theory methodology will
also be used because a qualitative research approach is recommended when one
wishes to gain a deeper understanding of "complex social interactions" (Wells,
1995, p. 34).

Tiny Specks in Microscopes 25

Chapter 2
Methodology
This study uses grounded theory methodology to examine the basic social
process underlying the interactions that occur between human service workers and
parents with intellectual disabilities. Glaser and Strauss developed this qualitative
research approach in 1967 (Simms, 1980) because "they believed that adequate
theory could emerge only from intensive involvement with the phenomenon under
study" (Wells, 1995, p. 34). This kind of intensive involvement is achieved by
various data collection methods used in qualitative research. Some of these
methods include in-depth interviewing, observation, the use of books, videos,
government documents or any other medium that may be useful in making sense
of the research question (Wilson, 1985).
Grounded theory methodology was selected for this research for four
reasons. First, the rich data that can be collected using this approach will be
helpful in identifying "structural conditions", "consequences" and "processes"
that are imperative for understanding "complex social interactions"(Wells, 1995,
p.34) such as the interactions that occur between human service workers and
parents with intellectual disabilities. Second, this approach is recommended for
use in areas of study where there is little research. Third, it provides opportunity
for the voices of participants to be heard through the use of in-depth interviews.
Booth and Booth (1994a) note that research to date on parents with intellectual

Tiny Specks in Microscopes 26

disabilities "fails to convey any impression of the parents as people or of the lives
that they lead" (p. 31 ). And fourth, this methodology, unlike other qualitative
research methodologies, emphasizes theory development (Corbin & Strauss,
1990). Therefore, it both describes and provides an adequate explanation of the
phenomenon under study (Corbin & Strauss, 1990).
Because theory is being developed, this approach involves the researcher's
interpretation of the data. A tentative analytic framework is developed by the
researcher in the early stages of data collection and further verified in the field as
the theory emerges (Glaser & Strauss, 1970). This process is complete when no
more new information is obtained from the field and "when the researcher is
convinced that his [or her] analytic framework forms a systematic substantive
theory, that is a reasonably accurate statement of the matters studied." (Glaser &
Strauss, 1970, p. 272).

Method

Procedure
~ and Selecting Participants

A letter was sent to the local Ministry of Social Services (MSS), Services
to People with Mental Handicaps, now called the Ministry for Families and
Children, to request permission to carry out this study. Once granted, the District

Tiny Specks in Microscopes 27

Supervisor of the local MSS office was approached for the purpose of identifying
possible participants. Fourteen prospective parents were identified. Of these
fourteen parents six were chosen as possible participants for the study. These
parents were selected because the researcher carrying out the study had no
previous contact with them. (Prior to and during part of this study the researcher
worked in the office as a social worker.) Due to the limited number of possible
participants, parents could not be chosen according to the variability of
characteristics which is recommended in the grounded theory approach.
Initial Telephone Contact
The Ministry of Social Services Clerk, who signed a form to keep
participants' names confidential, contacted prospective parents to determine
whether they would be interested in being involved in this project. If participants
expressed an interest, the clerk asked them if they would be willing to accept a
phone call from the researcher to arrange a meeting for further information about
the project.
Second Telephone Contact
Once prospective participants agreed, they were contacted with a
telephone call to their homes within the first week of the initial contact. This
telephone call consisted of mentioning the phone call they had received from the
clerk, providing them with information about the researcher, as well as providing
a brief description of the research project. Prospective participants were then

Tiny Specks in Microscopes 28

asked if they would be willing to meet to further discuss the research project. If
parents were willing to meet, an appointment was scheduled at their convenience.
First Meetinfi
During the first meeting the project was discussed in detail so that
participants would have the required information needed to make an informed
decision about participating. Participants' questions were answered and it was
stressed that the project was voluntary. Participants were provided with the name
of a contact person at The University of Northern British Columbia should they
have any concerns about the research project. They were also asked to sign a
consent form that gave permission to tape the interviews and use the taped
information for the project. Together participants and the interviewer developed
code names to protect their identities. During this meeting participants were also
introduced to the tape recorder enabling them to feel more comfortable with it
prior to the first interview. A future interview date was scheduled at the
participant's convenience.
Preparation for Interviews
Lindsay's (1996) audio tape guidelines were used to ensure the taping of
all the interviews went smoothly. Prior to the scheduled interview dates, tape
recorder equipment was tested to ensure it would operate. A durable tape recorder
was used with a pop-up microphone to ensure taped interviews would be as clear
as possible. In addition, two sets of batteries were charged so a backup was

Tiny Specks in Microscopes 29

always available if needed and an extra standard size cassette was always carried
to the interview site.

Data Collection Method
In-Depth Interviews: Number of Participants Interviewed
In-depth interviews were carried out with three parents (i.e., one mother
and two fathers) . Of the six parents originally approached to participate in the
research project, three parents later declined. After the first meeting, one parent
decided that there would be too much risk involved in participating in such a
study. For example, it is important to mention that it may have been too risky for
some parents to agree to participate in the project because the researcher worked
in the same office from where the participants were selected. Participants were
required to trust that the researcher would not divulge confidential information to
her co-workers. In retrospect, it would have helped to reduce participants' anxiety
if the researcher had chosen an office where she did not work. The other two
parents who expressed an interest in participating in the study were unable to
make the first meeting. They were contacted again and a second meeting was
scheduled which they were also unable to attend. A message was left on their
answering machine asking them to contact the researcher about rescheduling the
meeting if they were still interested in hearing more about the project. It was later
learned that these parents were right in the midst of dealing with some difficult

Tiny Specks in Microscopes 30

family circumstances which would have made it hard for them to participate in the
project.
Interviews
A total of seven interviews were conducted over a three month period.
Parents were interviewed in their homes. The first parent was interviewed twice,
the second parent was interviewed three times and the third parent was
interviewed twice. Each interview, on average, was about one hour. Initially, a
semi-structured interview guide was used. After the first interview, however, the
interviewer realized the guide was an unhelpful tool for encouraging parents to
provide a full account of their experiences. It was also discovered that an
unstructured interview would give the interviewer the flexibility to ask questions
important for identifying a wide range of events relevant to the topic under study.
Furthermore, it became apparent that it is important to adapt the interview to
respect the individuality of the interviewees.
Structure of Interviews
Each interview began with an informal visit and snack. It was also
confirmed that it was still a good time for the interview to take place. In some
cases it was not convenient for parents, so another time was scheduled.
Participants were reminded that the tape could be turned off if they preferred not
to have a segment recorded. Equipment was tested to ensure it would operate

Tiny Specks in Microscopes 31

smoothly. Participants were thanked for the interview. Usually a visit would take
place after interviews.
~

Once interviews were completed, duplicate tapes were made for back-up
purposes. All the tapes were labeled with participants' identity codes and the date
of the interview. Each participant was also assigned a specific color. Colored dots
were then used to mark the participants' tapes for easy identification. The dots
were also used to mark the sides of the tapes that had already been used. This was
done to guard against taping over already recorded information.
Transcriptions
Interviews were transcribed immediately as the data obtained from each
interview influenced the direction of future interviews. Lindsay's (1996)
"transcription conventions" were used to capture the emotional content of the
interviews. For example, as illustrated in Figure 1, higher font sizes were used to
indicate an increase in voice volume, while lower font sizes indicated low voice
volume. Other transcription conventions were used to indicate pauses, accelerated
speech and speech rates.

Tiny Specks in Microscopes 32

Figure 1. Transcription Conventions from a Sample of the Transcripts.
Transcript
Mhm. Can you tell me a little bit
about.. urn .. (smack lips) about
that last. . urn comment that you
made. That s.h.e.'s in your life
too much? Can you tell me what
that's like?

(Big Sigh) Well (sigh) any

l.i.t.t.l.e .. thing we so she has to
know about it. A. For an
example .. If.. we .. run out of
food .. for, for our little one she
has to make a huge statement
about it. Like, don't ever let it
happen again.

Symbols
about .. urn ..
s.h.e.' s in your
life too much

(Big Sigh)
Well (sigh)

Explanations
longer than normal pause
between words.
slow speech, as indicated by
the periods, and accelerated
speech, as indicated by the
italics.
higher font size indicates
higher volume, lower font size
indicates lower volume.

don't ever let it change in font type indicates
happen again. speaker is using someone
else's words.

The only supervision I've ever
had was .. my family = But I've
my family=
never had people looking at us
But
like .. we're .. tiny specks in
magnifying = glasses or in .. a .. in
microscopes.

time between words is either
shorter or longer than normal.

It is important to note that at the time of the interviews it was not always

possible to detect the emotional content of the interview due to the emphasis that
was placed on understanding the content. The transcription conventions were
ideal for back tracking later to gain insightful information. For instance, the
transcription conventions were helpful for detecting emotions such as anger which
was often indicated by higher voice volume. In subsequent interviews the area of

Tiny Specks in Microscopes 33

the transcript where such emotion was detected could be further explored which
led to more detailed discussions about a particular incident.
Data Analysis
The transcribed interviews were coded and analyzed as soon as possible
after each interview. In grounded theory it is important for analysis to begin early
on in the interview process as the analysis dictates what information is sought in
future interviews.
Once the interviews were transcribed, each comment made by the
interviewer and interviewees was coded using a method from Experience
Research Social

~

Methods form the

~

(Kirby & McKenna, 1989).

For example, comment number one by the interviewer in the first interview was
coded HIJHI and comment number one by the interviewee in the first interview
was coded HURl. HI refers to the first interview in the interviewee's home. The
letters JH and JR are the interviewers and interviewee's initials and the number 1
refers to the first comment made by both the interviewer and interviewee. These
codes, shown in Figure 2, were used to protect participants' identities and they
also proved helpful later for tracking the interview data.

Tiny Specks in Microscopes 34

Figure 2. Sample of Coding and Transcript.
Coding
H1JR4

H1JH5

H1JR5

H1JH6
H1JR6

Transcript
Well.. It was basically .. urn the Ministry .. who .. a, was saying either
do this or we= can't help you, you know. So, a, the first.. social
worker I had was Stephanie Winters (not the social workers real
name) and .. she was there when I needed her and .. she decided just
to quit because she didn't have much time for her, or her boyfriend.
So .. she just quit and now .. another social worker come, came in ..
and it's like .. She, I think she is in our life too much.
Mhm. Can you tell me a little bit about.. urn .. (smack lips) about
that last .. urn comment that you made. That s.h.e.' s in your life too
much? Can you tell me what that's like?
(Big Sigh) Well (sigh) any l.i.t.t.l.e .. thing we so she has
to know about it. A. For an example .. If.. we .. run out of food .. for,
for our little one she has to make a huge statement about it. Like,
don't ever let it happen again. A, she threatened us a few times
to take him away. Urn .. I've just. Bluntly, I think she is in our life
too much. And I'd prefer just.. for her to back completely away
from us. Urn, I'm going to request another worker. I'm going to
talk to her supervisor and I'm going t.o t.e.l.l h.i.m I'd like to have
another worker because I think she's in our life too much.
Mhm. Okay. And had you had workers before coming to Prince
George at all or was this the first, urn, time that you've had them?
I've .. The only supervision I've ever had was .. my family = But
I've never had people looking at us like .. we're .. tiny specks in
magnifying = glasses or in .. a .. in microscopes. They look at us like
oh, okay .. that bug needs help you know . We're looked on all
the time. We can't make any moves. I feel like we have to get
permission even to go outside.

After the transcripts had been coded, they were entered into the "Nud•ist"
computer program which is used for analyzing qualitative data. "Nud•ist" was
used to mark and track incidents in the transcripts relevant to shedding light on
the research question. Once incidents were identified the program provided a
means for attaching conceptual labels to these incidents which could then be

Tiny Specks in Microscopes 35

tracked throughout all the transcripts. This allowed each piece of data to be
compared for similarities and differences. Similar concepts that continued to
appear in the transcripts were grouped together to form categories and
subcategories. As shown in Figures 3 and 4, these categories were then defined
using concepts that had been previously identified.

Figure 3. Subcategories and Definitions.
Subcategories

Definitions

Coercive Intervention

making and/or carrying out threats for the purpose of controlling
client's behaviors that are judged by human service workers to
be negative.
Power of directing means of regulating (Die. of Sociology, p.
183). Also evidenced by:
clients are given no choice; human service workers need to know
everything; human service workers telling people what to do or
what is needed; human service workers making the decisions;
client's feelings that they are being looked over all the time. This
includes such things as checking, correcting and having to ask
for permission.
Exercised over other individuals
There are differences of interest
Power is negative involving restrictions and deprivations for
those subjected to domination (Dictionary of Sociology)
Turning inwards i.e., not trying hard enough
Includes judgments as a means of keeping people in their place
Assigning fault and/or responsibility to oneself
Assign fault or responsibility to (Webster Dictionary)
Includes a judgment from the outside/others
May include others asking for explanations such as where, why
and how.
Referring to their disability as to why they need assistance.
Inability to change situation/hopelessness
Things done, adjustments made to make the best of the situation.
Help with day to day affairs.
Company/having someone to hang out with. Fun stuff.
Process of keeping watch over other parents with intellectual
disabilities to determine if their children have been apprehended.

Control

Power

Victims Blaming
Themselves
Blaming the Victim

Intellectual Disability
Powerlessness
Adjustment
Practical Assistance
Companionship
Hearing Through the
Grapevines

Tiny Specks in Microscopes 36

Figure 4. Categories and Definitions.
Categories
Recognize need for support
Maintaining Social Control
Adapting Parents': Survival
Tactics

Definitions
Stating need service due to disability.
Strategies that maintain social control. Social
control as defined as Fook's definition (1993).
Things done, adjustments made to make the best
of the situation. People comply even though they
may not like it.

Nud•ist was then used to create a tree to show the links or relationships
between concepts, subcategories and categories. These relationships were
continually tested against the interview data. Once these relationships began to
become evident, the computer program "Word" was used to make two figures.
The first figure was made to show the linkages between the actual words of the
interviewees or the raw data and the subcategories. The second figure showed the
linkages between the raw data that had been previously coded, the subcategories
and the categories. These figures, illustrated in Figure 5, were useful for
developing a framework to explain how human service workers impact parents
with intellectual disabilities because it provided a method for working within the
entire framework. In addition, the figures were used as visual tools in order to
obtain an overall sense of the participants' situations.

Tiny Specks in Microscopes 3 7

Figure 5. Linkages between the Raw Data, Subcategories and Categories.

Categories

Subcategories

Maintain
Social Control

Coercive
Intervention

Codes
HIJR3

HIJR4

HIJR5

HIJRIO

HIJRII

Control

HIJR5

HIJR15

HIJR52

Text
Uh .. When I first came to Prince George .. 1.. got into the
AIMHI program and .. AIMHI was supported by .. the Ministry
=of Social Services. And that's how .. I became between em. It
was like two walls. And, I really . To them I really had no
choice. They were saying either you get help or you 're out
on the street with no .. food or money.
Well .. It was basically .. urn the Ministry .. who .. a, was saying
either do this or we= can' t help you, you know. So, a, the
first.. social worker I had was Stephanie Winters (not the social
workers real name) and .. she was there when I needed her and ..
she decided just to quit because she dido 't have much time for
her, or her boyfriend. So .. she just quit and now .. another social
worker com, came in .. and it's like .. She, I think she is in our
life too much.
(Big Sigh) Well (sigh) any l.i.t.t.l.e .. thing we so she has to
know about it. A. For an example .. If.. we .. run out of food ..
for, for our little one she has to make a huge statement about it.
Like, don't ever let it happen again. A, she threatened us a
few times to take him away. Urn .. I' ve just. Bluntly, I think she
is in our Iife too much. And I'd prefer just.. for her to back
completely away from us. Urn, I'm going to request another
worker. I'm going to talk to her supervisor and I'm going t.o
t.e .l.l h.i.m I'd like to have another worker because I think
she' s in our life too much.
Well, i.t. 's l.i.k.e .. somebody holding a gun to my head and
say you either do this or we'll kill you you know. And it's
like being robbed. Either give me all your money or I'll put a
bullet in your head .. It's like the Ministry is doing that.
Either have all these workers or you lose everything. It's
like urn .. being, being really rich you know. Either do this or
you'll be cut off you know
T.h.e , the actual service of them and life skills and the health
nurse. Either .. have all these people come over .. or (phew) you
lose, you lose the baby because .. you won ' t know what to feed
him or..
Well (sigh) any l.i.t.t.l.e .. thing we so she has to know about it.
A. For an example .. If.. we .. run out of food .. for, for our little
one she has to make a huge statement about it. Like, don't ever
let it happen again. A, she threatened us a few times to take
him away. Urn .. I've just. Bluntly, I think she is in our life too
much. And I'd prefer just.. for her to back completely away
from us. Urn, I'm going to request another worker. I'm going to
talk to her supervisor and I'm going t.o t.e .l.l h.i.m I'd like to
have another worker because I think she's in our life too much.
Well. . It doesn ' t seem too bad now. Urn .. Now it's hard for me
to make friends .. because I almost made a friend there and .. the
guy left and started .. and, he was, he 's working now. So I, I
almost made a friend there .. But, a, it's hard for me to make
friends . It's like .. the Ministry if saying to me hey, no friends .
You're with us .. that's our restriction . And, it's like we ' re
behind bars and we hafta .. do whatever they say
Urn, well , it depends what they schedule me for, like, for , a,
budgeting and grocery shopping or urn (smack lips). If I'm
moving we look for a, a apartment or urn .. or if I have an
appointment with somebody else and they can take me there

Tiny Specks in Microscopes 38

Chapter3

Findings
As indicated in Figure 6, some interesting categories and subcategories
emerged from the information provided by the participants in this study. A
summary of these categories provides some insight into the interactions that occur
between human service workers and parents with intellectual disabilities.

Figure 6. Theoretical Framework

r--,- Recognize Need for Support

l

1

1------- Intellectual Disabilitl
1------- Practical Assistance
>-------- Companionship

! I Maintaining Social Control
Hearing through the Grapevines
Coercive Interventions
Power and Control
Blame the Victim
Victims Blaming Themselves
I

Powerlessness

I

L_ Adapting: Parents' Survival Tactics

! I

1

2

Adjustment

Italics indicates categories.
Small font indicates subcategories.

Tiny Specks in Microscopes 39

Recognize Need for Support
The parents in this study all indicated in one way or another that they required
3

support from human service workers. For instance, Jesse explains:

I need a lot of help financially wise ... because I'm slow.
And George states:

I'm pretty slow at it ... I get some confused and lost.
Ginger adds:

I couldn 't figure out anything and I was about 28 going on 29.
Parents seemed to value the practical support they received from human
service workers, although it was clear that they would have preferred to be the
ones to choose or judge when this support was needed .

...[T]he first social worker I had was Stephanie Winters and she was there
when I needed her... .{A]nother social worker came in and it 's like ... I think
she 's in our life too much.

If I need help, they 'll be there ... Last week I didn 't have a car ... My bumper
was smashed into and [all] I did was call Josephine and ... !just told her my
car is broken could you pick up John and she did So it works out good that
way ifyou need help.
In addition to the practical support provided by human service workers, these
parents saw service providers as fulfilling the role of a companion or friend.

3

All the names used in the findings are pseudonyms.

Tiny Specks in Microscopes 40

Sometimes I have other things on my mind than life skills coming in all the
time, but I enjoy their company ... Josephine is outgoing and Irene is pretty
outgoing. They are pretty good people to hang out with.
Having company seemed to be one of the positive spin-offs of receiving support
from human service workers as well as alleviating worry. George states:
Everything is clean when I get home ... Relaxing more. I don 't have to worry
about doing any work.
Jesse comments on how he felt when the life skills worker used her credit card to
assist him with purchasing a money order.
... I didn 't have to worry about {getting change} because the person had their
gold card with them.
In these examples the support parents received was welcomed. However, in
other instances the assistance parents received from human service workers was
clearly unhelpful and although parents recognized they needed support in some
areas, it was sometimes viewed as an intrusion:
Sometimes it 's like an invasion. Get out! Get out!
Or, in it's most extreme form, it was viewed as a gamble with high stakes at risk.
Either have all these people come over or you lose ... the baby because you
won 't know what to feed him...
In this example Jesse feels that if he doesn't do what he is told he will lose his
son. Another parent comments:

Tiny Specks in Microscopes 41

[A }t times I want to take her [out of the daycare}, but I leave her in because
it's the best of her... I want her to be more better in school than I have been.

This mother is thinking about taking her daughter out of daycare because the
day care staff are telling other service providers that she is not feeding her
daughter a proper diet. She decides on her own, however, that it is in her
daughter's best interest to stay in day care.
As illustrated in these excerpts, parents recognized that they required some
support, but being the recipients of service was at times risky and overwhelming.
Once in the service system these parents quickly discovered that services were not
always delivered according to their terms (or without some consequences). In fact
the parents interviewed for this study reported experiencing more grief because of
their involvement with human service workers. What seems to stand out for these
parents is the control that is exercised over them by the people that are supposed
to be providing services to assist them.
Social Control

It appears that what is reflected in these parents' experiences is the social
control function that is consciously or unconsciously embedded in helping
relationships. "The process of social control refers to the way in which society
ensures that its members behave in socially approved and accepted ways. If these
norms are contravened there are sanctions which apply." (Fook, 1993: 60).
Human service workers, and particularly those that work in child welfare, are

Tiny Specks in Microscopes 42

often referred to as agents of social control. They are given the job of ensuring
members of society behave in a socially acceptable manner.
As illustrated in the following examples, the parents in this study experienced
this kind of control in every aspect of their lives. Social control presents itself in
its extreme form in this example.

Well [the social worker] is ready to take [our son] anytime. If we step out of
line or something she is ready to take him. I mean she has the authority to do
that, but she has threatened us with that. If that happens again, I'm taking him
away. I'm reporting you.
The social worker communicates her disapproval of this parent's behavior by
making it understood that the behavior which is perceived to be unacceptable had
better not occur again or drastic consequences will follow. The message is clear.
Behave accordingly or be reported to Child Protection. Parenting, however, is not
the only area where this control is exercised. Jesse comments on how his finances
have changed since the birth of his son.

Well, the worker claimed that Jasmine (the baby 's mother) was spending [her
cheque} on her own, for herself which was not true. She was buying the baby
accessories, diapers, food, whatever he needed And I was really disappointed
with her because she didn 't believe that. She thought Jasmine was spending it
for herself so she fixed it so we 'd have one voucher and one cheque while the
rest of the people out there get four or jive hundred dollar cheques and they
can do whatever they want with.

Tiny Specks in Microscopes 43

Jesse was also concerned with the control that was being exercised around child
care for his son .

... that was another problem ... we'd have to look for baby-sitting. We'd have to
make it a goal. Well, I didn't feel right because I didn't think that should be a
goal. I think that should be up to us show we want... We should pick our own
baby-sitters. But apparently [they} want us to make sure the baby-sitter has
first aid, knows what they're doing, has kids of their own. .. Know what kind of
formula the baby takes.
Ginger describes her experience of being told to move because their home is too
cold.

I have to move because of Betty (her daughter). It's too cold in the winter
time for her and she'd get sick and I have to have a warmer place... so then
she isn 't having a runny [nose} and cold-cold hands.
Ginger also talks about a complaint from day care staff concerning her daughter's
diet.

I didn't know which person or daycare, [but} Betty doesn't have the right
amount offruit and that.
She later states that she heard this piece of information from her life skills worker.

I heard it from Sarah. I'd rather have it through the person that says it.
Ginger also spoke about an incident when one human service worker would come
to her home even though she had canceled the appointment.

Tiny Specks in Microscopes 44

She 'd come on days when I have told her not to come and she 's there ...
Sometimes if my company is here, sometimes I don 't even tell [them] that I'm
not around. I will be with [my company] and they have to track me. Well,
Brenda used to track me down.
These examples indicate the degree of control, or lack of control, parents
experienced in many facets of their lives ranging from their finances to the use of
their spare time. Ginger sums up her feelings with a general comment about how
people with disabilities are treated .
... [S]ome people with disabilities they end up having their children taken
away. And with me, I'm having problems with Betty. They seem to just pick on
certain people all the time and I think it 's not right.
Ginger is questioning whether she and other parents with disabilities are treated
fairly. She is aware of the risk oflosing Betty if there are problems. This
awareness seems to stem from the constant reminders she receives from human
service workers and from what she hears "through the grapevine." Because of
these reminders, she knows she has to adjust her behavior to meet the larger
society's expectations or she may lose what she loves the most...Betty.
Maintaining Social Control
~

~

the Grapevines

Hearing through the grapevine appears to be one way that social control is
maintained.

Tiny Specks in Microscopes 45

It 's like poor Helen - She had her little girl taken away and she can only see it
maybe .. . only a couple of hours a week .. . And then another person, she 's not
really a friend either, but through the grapevines I heard she ended up having
her little girl taken away too.
Ginger seems to keep abreast of what happens to other parents with disabilities.
This is yet another reminder for her of what could happen if societal expectations
around parenting are not met. Ginger states:

Sometimes it's like I'm lucky that I have Betty around even though she had so
many problems at the beginning.
In the back of Ginger's mind she realizes that there is a risk that she could lose
Betty too. Not only does she hear what has happened to other families, but she has
also been warned that Betty could be taken away.
Hearing through the grapevines was not the only way social control was
maintained. It became evident from parent's experiences that various strategies
were used by human service workers to maintain social control. These strategies
involved the use of coercion, power, control and blame.
Coercive Interventions
In many instances parents were informed that they would lose something
important to them if they did not follow through with human service workers
recommendations. They were coerced or forced into accepting service or changing
some aspect of their behavior.

Tiny Specks in Microscopes 46

Last year Betty was very, very tiny. She still is, but they were going to take someone was going to call up some kind of thing so then Betty would be taken
away and life skills and family support jumped right in which was good. .. I
had to get warmer clothes for Betty and start thinking much more ahead than
!was.
In this example, support was enlisted to ensure that Ginger was dressing Betty in
warmer clothing. Ginger felt she had to demonstrate that she could think ahead
and dress Betty properly or else she would lose Betty to the authorities. Jesse
relays a similar experience .

... [A]ny little thing we do she has to know about it... For an example, if we
run out offood for our little one she has to make a huge statement about it
like, "Don't ever let it happen again!" She threatened us a few times to take
him away.
In this example Jesse feels that he must not only resolve the identified problem
but he also has to ensure that it never happens again or Bill could be apprehended.
Jesse later provides the following comment about his relationship with the agency
that coordinates his service.

Either have all these workers or you lose everything. It 's like being ... really
rich you know. Either do this or you 'll be cut off
Jesse feels he has to conduct himself accordingly in order for the family to remain
together. He must accept all the help that is offered and he must correct any

Tiny Specks in Microscopes 4 7

problems that have been identified. He uses the word "pressured" to describe how
his service has changed since the birth of the baby .
...[w]e 're actually being more pressured.

This feeling of pressure seems to stem from being threatened and controlled.
Parents frequently reported that they were given no choice or say in important life
matters.
Power and Control
Power and control were used, for example, to ensure that parenting courses
were attended, money was spent appropriately, children were well clothed and fed
and medical concerns were addressed.
Jesse felt he didn't have a say in whether to participate in a parenting course
or not.
... [b]efore I knew it, I was in this program. I didn 't have a chance to say,
"well, can we think about this" ... Before we knew it, we were in there ... I
didn't have a chance to sit down and go, "hm, I'd like to really look at this
place and take a tour. They didn 't give me a proper tour at all. Just bang you 're in it whether you like it or not.

He also felt he didn't have a say in how his money was distributed .
... for some reason we kept running out of stuff like baby formula and so it was
turned around that we got a hundred and twenty-jive dollar voucher and a
fifty dollar cheque.

Tiny Specks in Microscopes 48

Ginger expressed these feelings about Betty's clothing .

... and I have to double layer Betty 's clothes in the winter too and I only put
two layers on Betty which is good so then I have no problems with them on my
back now.
When parents talked about their experiences with human service workers they
often reported feeling watched and checked upon.

The doctors were checking up on me almost every week or every month. Sarah
had to come in for six months and its like, "No way- I don't want nobody to
come in. I can do this on my own. Sarah would come around eight o'clock in
the morning [everyday of the week except Saturday and Sunday] and stayed
until eight-thirty and just watched me with Betty.
George says,

They'd see if Donna's okay. Check her out and see if she's okay.
Jesse expressed how it feels to be controlled with this powerful
statement.

The only supervision I've ever had was my family. But I've never had people
looking at us like we 're tiny specks in magnifying glasses or in. .. microscopes.
They look at us like, oh. .. that bug needs help you know. We're looked on all
the time. We can't make any moves. I feel we have to get permission even to
go outside.
Being observed like "tiny specks in microscopes" was not without purpose. Jesse
states:

Tiny Specks in Microscopes 49

They're always on us about something. .. [t]he social worker we have now her
mind is all baby. If something happens to our little boy we pay the penalty. We
pay the price. We pay for his damage.
It is evident from Jesse's comment that he feels he never gets a break. He knows

that if he doesn't tow the line, he will "pay the price."

If we step out of line or something [the social worker} is ready to take [our
son}.
It appears that when events in these parents' lives took a downward turn, they got

the blame.
Blame the Victim
The blaming the victim strategy whether engaged in consciously or
unconsciously, puts the responsibility for change solely on the individual rather
than on society as a whole. Blaming the victim maintains social control as well as
the status quo. It is the victim who is at fault and must adjust his or her behavior
to meet middle class standards. Unemployment, low income, substandard living
conditions, limited access to resources and discrimination are not factored into the
overall equation.
Jesse describes how he was blamed when he went to his social worker for
help.

Before we moved I didn 't have very many patience when our little boy started
crying and... he didn 't want to be fed or changed or played with ... I got very

Tiny Specks in Microscopes 50

frustrated and I hit him and. .. that shouldn 't have happened, but I went to my
social worker and she was proud that I did that - that I went to her, but she
questioned me and said "why did I do that? What possessed me to do that? "
Ginger also talks about how she has been judged for the wrong reasons .

... I am always trying to do what 's best for Betty and sometimes people are
judging you for the wrong reason. .. And it 's like, "lay off I don 't want you in
my life. "
As can be seen from this example, human service workers, at times, created
difficulties for parents which resulted in negative spin-offs i.e., parents not
wanting service providers in their lives . Ginger adds how being blamed has
affected her.

I ended up crying for the first little while then I started talking to my... Mom.
My mom just sort ofsaid, "humph." She shrugged her shoulders and. .. she
just started not screaming but telling me that I have to ... be better... make
everything work out right.
Blaming the victim leads to parents blaming themselves.
Victims Blamin2 Themselves
The external blame parents experienced was internalized. Ginger talked about
how she felt when she received a complaint from human service workers.

It made me feel like I'm not a good mother and. .. I am try ing. .. I am no good
and worthless... that 's it.. . It can be fixed up - I just have to work at it.

Tiny Specks in Microscopes 51

Ginger blames herself. She sees herself as "no good" and "worthless." She feels
she needs to try harder to be a 'good mother. '
Jesse talks about the importance ofhaving a job and his own money so that he
can buy what he wants for his son and partner. He describes what he feels he
needs to do to succeed at work.

All I'd have to be is motivated and know what I'm doing and how hard I'm
suppose to work and not dawdling.
The parents interviewed for this study blamed themselves; they felt they needed
to work harder to become good parents or to succeed at work even though they
were faced with such obstacles as low income, substandard living conditions,
discrimination and limited education.
In addition to these obstacles, parents' behavior was continually monitored to
ensure it met 'acceptable' standards. If it was decided that the 'standard' was not
being met, such tactics as coercion, control and power were used. This led to
parents feeling hopeless and powerless to change their situation.
Powerlessness
Powerlessness was demonstrated by parents' apparent apathy and passivity
concerning their lives. In the following example Jesse talks about how he keeps
quiet ifhe disagrees with what service providers are proposing .

... I don 't say, "look. .. it 's our baby "... because I don 't want to start a big, a
big argument over it... I don 't say anything because it would start a big fight.

Tiny Specks in Microscopes 52

Ginger provides an example of what happens if she is not home in time for her
homemaker's appointment.

I've left my cleaning lady... without remembering to come home and she gets
mad at me. She just says "Ginger... you have to be here or else the Ministry
won 't pay for cleaning up, he/ping you clean up... " So it's like, I'm here.
She also talks about how she comes to accept certain services even though she
feels she does not need them.

They would always put words in my mouth and say you need it. And it 's like, I
don't need it.
These examples seem to illustrate that there were times when parents did not see
eye to eye with human service workers, but they went along with the service plan
anyway. In these instances, they felt they had no choice or were afraid of what
might happen if they refused.
Parents also seemed to feel that no matter how hard they tried to be 'better'
parents, they were in a hopeless situation. Jesse explains:

Well. .. I think our social worker is ready for us to do something really bad,
like beat Bill up or something.
Ginger also states:

If Betty has a black eye they'd probably think I punched her or something.
They would not think of a chair being in the way.
Both Jesse and Ginger felt human service workers would not give them the
benefit of the doubt should something happen to Bill or Betty.

I

Tiny Specks in Microscopes 53

It seems that the parents interviewed for this study were in a no-win situation.

They had limited options and choices over what services they wanted and they
had the perception that human service workers were waiting in the wings for them
to make a mistake. To make matters more complicated, they were unsure about
whether human service workers would believe them should something happen to
their children. Considering all of these factors, parents had no choice but to adjust
or adapt to their situation.
Adapting: Parents ' Survival Tactics

Parents had to find some way of dealing with a seemingly hopeless situation.
Some of the ways they dealt with the demands of human service workers ranged
from altering the events in their day to ignoring events that they felt they were
powerless to influence or change.
For instance, Jesse talks about how he adjusts his schedule to accommodate
human service workers .
... I know this person 's coming I can 't go anywhere. I have to wait for em...
but, I can do other things. I can watch a movie or clean house or something
until they come ... We have to set [aside} whatever project we're working on
and we have to deal with that person and then that person leaves we can go
back to whatever we 're doing.

Ginger handles the demands of human service workers in a different manner.

Tiny Specks in Microscopes 54

Sometimes if my company is here sometimes I don 't even tell that I'm not
around. I will be with [my company] and they have to track me.
In this example, Ginger decides to do what she wants anyway and waits for the
consequence of being tracked down. It seems she decides to take the risk because
the consequences are not too severe.
One parent also reported using his or her disability to buy some freedom.

If I say !forgot [the appointment], they believe me.
Summary
These findings seem to suggest that parents recognized that they required
some formal support to manage their daily affairs. The support parents seemed to
welcome consisted of such things as practical support in crisis situations, support
aimed at alleviating worry, and the experience of companionship that ensued from
the helping relationship. At times, however, the support reflected a social control
function which parents found unhelpful.
Social Control appeared to be maintained through various mechanisms
leading parents to experience a sense of powerlessness over their situations. Some
control seemed to be regained, however, through the use of certain survival
tactics.

I

Tiny Specks in Microscopes 55

Chapter4

Under the Microscope
To gain a deeper understanding of what is reflected in the findings of this
study, it is necessary to consult some of the work that has been done in the field
of child welfare, radical social work and disabilities. These particular resources
have been selected because they analyze problems from a structuralist viewpoint.
They also demonstrate how problems tend to be viewed by helpers as being
caused by individual inadequacies rather than how our society is constructed.
This chapter will attempt to use the literature to show how elements of the
larger society are reproduced in human service work. Hopefully, this approach
will help to shed some light on why parents with intellectual disabilities reported
many negative experiences in their dealings with human service workers.
One of the reasons why the parents interviewed for this study may have
reported these negative experiences in their interactions with human service
workers is because there is no clear definition on the meaning of adequate
parenting. For example, Espe-Sherwindt and Crable (1993) state that "perhaps the
greatest difficulty facing parents with mental retardation is that society has not
come to a consensus on what is meant by adequate parenting" (p. 158). They add
that this lack of consensus poses additional problems for people with intellectual
disabilities because there is a risk that they will be judged according to a variety

Tiny Specks in Microscopes 56

of standards depending on the different professionals they are involved with at
any given time. What is particularly disconcerting about this is that the criteria
that parents seem to be evaluated against reflect what the larger society views as
' good parenting.' More specifically, parents are judged on their ability to parent
according to middle-class standards. For instance, Armitage (1993) states, "the
concept of 'neglect' is used to indicate child care that does not accord with
middle-class standards" (p. 39).
Swift (1995), who does research in the area of child neglect, shows that child
welfare workers' assessments of parents can be influenced by the larger society.
Furthermore, she points out that this is often done unknowingly because child
welfare workers, like all human service workers, are part and parcel of the society
in which they live. To further illustrate her point, Swift makes some interesting
observations about parenting discourse and how it can affect the way in which
parenting is evaluated. One of the examples she uses to form her argument
involves the critical analysis of parenting magazines. Swift observes that the
advice given in parenting magazines is geared mainly toward the stereotypical
family comprised of mom, dad and the two children. The magazines, she notes,
also often make assumptions that mom is trying to juggle both career and
homemaking responsibilities. She states that the advertisements in these
magazines depict mothers as primarily "white, young, well cared for, alert,
attentive, attractive woman" (p. 106). She then suggests that it is against these
kinds of standards that parents are evaluated. Her research provides examples of

I

Tiny Specks in Microscopes 57

notes written in child welfare files about mothers whose personal appearances and
character traits are described as diametrically different to the women portrayed in
these magazines. For example, "mom has dirty blonde hair and protruding teeth.
She is tense, weepy, possibly having a low IQ" (p.l08).
In this example, the mother' s physical appearance as well as her presumed
low intellectual functioning are tied to her ability or inability to parent. According
to Swift (1995) this is not a new phenomenon as this kind of discrimination
frequently appeared in child welfare file recordings in the 1930s when concerns
about the feeble-minded had escalated.
What is apparent from these examples is how decisions can be made and
justified about a person' s ability to parent based on 'how they look,' 'how smart
they appear', or how ' emotionally together' they seem. What is problematic about
this is that these arbitrary standards are based on what the larger society defines as
the requisites or even the prerequisites for ' good parenting'. In fact, Hayman
(1990) argues that "class and cultural biases" are exacerbated when parents appear
to be mentally handicapped because their behaviors tend to be compared to the
"norm" (p. 1228). He suggests that cases where parents with mental handicaps
have had their children apprehended soon after birth reflect this bias. These
children, he argues, have been removed on the belief that they are mentally
incapable of parenting. They have not been given the chance to show whether
they can or cannot parent. In addition to needing the prerequisite of intelligence to
parent, it appears that parents must be able to prove that they can fulfill certain

Tiny Specks in Microscopes 58

parenting obligations. For instance, Hayman points out that there are several areas
upon which parents seem to be evaluated. These areas include, meeting the child's
physical and emotional needs, ensuring the child is intellectually stimulated, and
preserving the child' s "health and safety." As Callahan (1993) explains, "parents,
usually mothers, are judged largely on the visible aspects of their work, the
children's health, clothing, behavior, etc" (p. 80).
These "visible" standards require money and resources to uphold. Perhaps this

.

is why Armitage (1993) defines neglect as "child care that does not accord with
middle-class standards" (p. 39). It is primarily the poor and other minority groups
that are accused of neglect (Swift, 1995). Furthermore, if one of these parenting
standards is identified as not meeting societal expectations this justifies a visit
from child welfare authorities (Swift, 1995). Once child welfare is involved
parents are subjected "to ongoing scrutiny and criticism" while the children
remain in the home (Swift, 1995, p. 123). In addition, the human service workers
enlisted to assist these parents play a dual role (Swift, 1995). They are both
helpers as well as "scrutineers" to use Swift's word. Therefore, helpers not only
assist parents to change the undesirable behaviors that have been targeted, but
they also supervise and monitor parents' progress, reporting any further parenting
deficiencies to the authorities (Swift, 1995). Swift adds that this is often how child
welfare workers justify keeping children in questionable circumstances.
From the perspective of the parents with mild intellectual disabilities that were
interviewed for this study, this type of surveillance occurred even before they

I

Tiny Specks in Microscopes 59

failed to meet one of these parenting obligations. The parents who were all
receiving voluntary support services noted that after children came on to the scene
the number of voluntary services they were getting increased whether they needed
them or not. Their lives became chaotic. They were invaded, supervised, watched
and checked up on. In short, they lived life under the microscope as illustrated by
this parent's comment: "The only supervision I've ever had was my family, but
I've never had people looking at us like we're tiny specks in magnifying glasses
or microscopes. They look at us like, 'Oh, okay, that bug needs help'." This is yet
another example of how "class and cultural biases" (Hayman, 1990) are
compounded when mental handicap is added to the parenting equation. The
parents in this study, because of their intellectual disabilities, were over serviced
to the extent that their lives were not their own anymore. They were judged
according to how they spent their money, how much food they had in the
refrigerator, who baby-sat for them, how their children were dressed and whether
they were feeding their children a 'proper' diet. Booth and Booth (1994b) noted
similar examples in their book Parentin2 Under Pressure: Mothers and Fathers
with Learoin2 Difficulties. One parent that they interviewed, who was receiving
statutory services, saw human service workers as a source of interference as
illustrated by the following comment: "I just want them to leave me alone, let me
get on with my life. I don't want anybody telling us what to do" (p.57).
Galper (1975) observes that this type of behavioral control seems to go hand
in hand with receiving social services. He states:

Tiny Specks in Microscopes 60

In all programs, a variety of notions about the ways in which people are
expected to behave are structured into the rules and regulations. It is very
difficult to think of any social service which is available to people simply as a
consequence of their human existence. (p.52).
He adds that welfare regulations have been used to alter clients' behavior and
keep it in line with conservative values. In addition he notes that all aspects of
people's lives seem to be regulated including their sexual conduct, work ethic and
household budgeting. Gal per's observations resemble what parents experienced in
this study. As noted earlier, parents were told what parenting classes to attend,
what qualities their baby-sitter should have, what type of home was suitable and
how to spend their money. As noted above, one parent reported the following:
We used to get a hundred and twenty-five dollar baby cheque. It was only for
Bill, for our little boy. Well the worker claimed that Jasmine was spending it
on her own, for herself which was not true. She was buying the baby
accessories, diapers, food, whatever he needed. And I was really disappointed
with her because she didn't believe that. She thought that Jasmine was
spending it for herself, so she fixed it so we'd have one voucher and one
cheque while the rest of the people out there get four or five hundred dollar
cheques and they can do whatever they want with.
This example illustrates how this parent's behavior was altered to meet societal
expectations. He was given a food voucher to ensure that part of his welfare
cheque would be spent on food. It is important to note that all the examples cited
by the parents in this study, where behavioral or social control was exercised,
involved the "visible" (Callahan, 1993) work of parenting.
In fact Hayman (1990) observes that love is considered to be unimportant in
the overall parenting equation.
Love is not insignificant; it is, as many children know, not that easy to come
by. When the courts insist that "love" is not enough, they speak in the voice of

;

....

...
·:·

Tiny Specks in Microscopes 61

reason. But that voice may not know love; it may reduce love to sentimental
visions. (Hayman, 1990, p. 1263).

,

.

This apparent over emphasis on the part of human service workers and other
decision makers regarding the "visible aspects" (Callahan, 1993) of parenting
while minimizing other factors such as love and socio-economic circumstances is
reflected in a study by Walton-Allen and Feldman (1991). They asked twenty-two
mothers with mental handicaps about their service needs. The mothers' answers
were then compared to their social service workers' answers who were also asked
to identify what services they felt these mothers needed. The areas of
investigation included child care and domestic responsibilities as well as
psychological skills. Under the category of child care was "child safety, hygiene,
development, discipline, stimulation [and] medical emergencies" (p. 141 ).
Domestic responsibilities included "budgeting, food preparation, cleaning,
shopping [and] nutrition" (p. 141 ). Psychological skills involved "vocational,
assertiveness, personal relationships, access to community resources,
communication, leisure [and] friendships" (p. 141 ). The study concluded that
social service providers felt mothers with mental handicaps needed more services
than they were getting while the mothers felt they were being over serviced in the
area of child care skills. In addition, this study found that workers believed that
mothers with intellectual disabilities were rating their child care abilities too high.
These findings are similar to what the parents in this study said about their own
situations. For instance, they reported that after their children were born the

I

Tiny Specks in Microscopes 62

voluntary services they received increased. In some cases they were provided with
services they felt they did not need, but were told that they needed. These services
were provided to ensure parents were attending to their children' s health, diet and
clothing requirements.
Walton-Allen and Feldman' s (1991) research as well as this research seems to
reinforce that the "visible aspects" (Callahan, 1993) of parenting are given the
priority by social service personnel working with parents with intellectual
disabilities. Socio-economic factors, it seems, are not considered to be part of the
parenting equation. For instance, it is difficult for parents with low income and
limited access to resources to be able to meet what the larger society expects in
terms of parenting. Therefore, it appears that some parents are further victimized
when the solution becomes to watch their every move to ensure that they are
fulfilling their parenting obligations. Also, it seems when the "visible" work of
parenting becomes the focus for change it is easy to blame individuals for not
satisfactorily following through with the work. The individual, not society
becomes the target for change. (Fook, 1993).
This "blame the victim" (Ryan, 1971) philosophy or "deficiency perspective"
(Booth & Booth, 1994b) attributes people' s problems to their own limitations and
incompetence (p. 81 ). The parents in this study expressed time and time again that
they were blamed for their parenting difficulties. One parent stated that she was
trying her best to be a good parent, but was continually blamed for the wrong
reasons. One example she provided was that she had received a complaint about

Tiny Specks in Microscopes 63

her daughter's lunches from the day care staff. The staff at her daughter's day care
felt the lunches were not nutritious because a fruit was not included. This was
upsetting to this parent, first, because the daycare did not communicate their
concern to her directly and; second, because she did not get an opportunity to
explain that her daughter could not digest fruits due to health reasons. Booth and
Booth (1994b) also reported in their study that some parents with intellectual
disabilities felt they were continually criticized, and were fearful that their
children would be apprehended if they did not meet certain parenting standards set
by the authorities. A relative of one of the parents in Booth and Booth's study
commented: "Sometimes they say to her, 'Your baby's not clean enough. If you
don't clean him up, we'll have to take him off you"' (p.57).
Mullaly (1993) observes that social problems viewed in terms of individual
weaknesses and deficits result in interventions that are controlling and coercive.
He adds, "because the nature of human beings is viewed as contentious,
competitive and self-absorbed, then social work must use coercive measures to
make sure people look after themselves" (p. 59). Interestingly all the parents in
this study reported experiencing coercive interventions. The most extreme form
used was the threat of involving the child protection authorities if identified
problems were not resolved.
Mullaly (1993) notes that this method of defining and intervening in social
problems stems from the "order perspective" which "dominates North American
social thought" (p.134 ). He states that order theory maintains that all people in

Tiny Specks in Microscopes 64

society agree with the values and the rules that govern society. He adds that this
shared agreement about how society should operate dictates what behaviors are
acceptable and unacceptable. For example, he says that if people do not conduct
themselves in a manner that is expected of them, then assumptions are made
indicating that something went awry with their socialization and rehabilitation is
warranted. He then notes:
If society's official agents such as teachers, social workers or police fail to
correct or control the malfunctioning or out-of-step person, then she or he may
have to be removed from society and the individual' s behavior neutralized by
institutionalization. This removes a threat to social stability and also serves as
an example to other would-be non-conformists and deviants. (Mullaly, 1993,
p. 135).
Order theory reflects the parents' experiences in this study. First, parents are
expected to adhere to certain parenting standards which seems to include a certain
level of intelligence. Second, when the parenting standards are perceived to be
inadequate, social services are provided to correct the identified problems. Over
time, if the problems are not remedied threats are given and sometimes carried
out. Other parents in similar situations then hear about these threats and the
negative outcomes that can result which further reinforces the importance of
complying with human service worker requests. For example, as noted in chapter
three, one parent in this study spoke at length about how she kept track of which
parents in the intellectually disabled community had their children apprehended.
She referred to this process as "hearing through the grapevines." This process in

Tiny Specks in Microscopes 65

itself reinforced for her that her child could be taken away too if she failed to
follow through with human service workers' recommendations.
Furthermore, this mother expressed feeling a sense of powerlessness or
hopelessness about her situation. She felt compelled to go along with service
recommendations even though she did not agree with some of the suggestions
because she was afraid of what might happen if she refused. She was also afraid
that she might be blamed for events that were out of her control. These feelings of
powerlessness led parents to develop unique strategies to deal with the demands
ofhuman service workers. It is interesting to note that Mullaly (1993) explains the
behavior of people who are poor in terms of the strategies that they must develop
to deal with poverty. For instance, he states that "the cycle of poverty theory"
attributes such traits as apathy and dependency among the poor to a dysfunctional
socialization process. He then adds that "no thought is given to the possibility that
many of these so-called traits of poor people are actually adaptations and
adjustments on the part of the poor to cope with poverty rather than actual causes
of poverty" (p. 137). In other words, he is suggesting that poor people have
developed strategies to deal with being poor. They are not poor because they are
apathetic or dependent.
This idea can also be applied to the parents in this study. It seems reasonable
to suggest that these parents developed the strategies of ignoring unreasonable
human service worker requests, and using their disabilities to buy some personal
space as a means to cope with human service worker demands. The concern that

Tiny Specks in Microscopes 66

arises due to the adoption of these strategies or survival tactics by parents with
intellectual disabilities is that, they may not receive the support that both they and
their children may need. In fact, it has been reported that some parents have had
such negative experiences with service agencies that they avoided them, thereby
"cutting themselves off from potential sources of support or help in crises" (Booth
& Booth 1994a, p. 31 ). Perhaps this can also be one way of looking at Vema

Vaudreuil' s situation in the widely publicized child abuse case in British
Columbia, involving five year old Matthew Vaudreuil which resulted in the Gove
Inquiry (Gove, 1995).
In the Gove Report an incident was cited which indicated that Vema's support
was reduced because she was overwhelmed by all of the assistance. In addition,
two incidents were cited where social workers' denied Vema's request for
Matthew to be taken into care on a temporary basis because they felt she was
using the Ministry services to shirk her parenting responsibilities. There were also
examples noted where services were terminated because she was not cooperating.
These incidents provide an example of how social service agencies sometimes
regulate clients' behavior to ensure it meets society's expectations. In fact, it
appears, that there is a general understanding that institutions will provide this
function. Furthermore, it seems apparent from these examples and this study that
parents may not seek the help they may need because of such negative
experiences with human service workers.

Tiny Specks in Microscopes 67

Espe-Sherwindt and Crable ( 1993) note that "the attitudes of professionals
may be the key piece of the puzzle of success for parents with mental retardation"
(p. 171 ). Because the attitudes of human service workers are important to the
success of parents with intellectual disabilities, an understanding of the larger
society and how it shapes our attitudes, values and practices including the way in
which we define, construct and resolve problems is needed. Without this
awareness, human service workers may continue to unknowingly reproduce the
inequalities that exist in society by unknowingly engaging in unhelpful
interventions.

Tiny Specks in Microscopes 68

ChapterS
Conclusions
Overall, four main findings emerged from this exploratory study. First, the
parents with intellectual disabilities in this study all recognized that they required
some sort of formal support due to the nature of their disability. The sources of
support they considered to be most valuable included such things as practical
assistance in crisis situations, practical help to manage such day to day activities
as finances and shopping, and practical support to alleviate worry. Interestingly,
one positive spin-off identified to receiving formal support services was the
company or companionship ensuing from the helping interaction.
The second major finding indicates that formal support was not always
delivered according to parents' wishes, particularly after children came on to the
scene. In fact, human service workers were more likely to be viewed as social
control officers. Parents reported feeling watched, checked up on, invaded,
supervised and told what to do. The areas oftheir lives reportedly affected
included everything from the use of their spare time to child care responsibilities.
Galper's (1975) work seems to support these conclusions. Although he does not
use the term social control, he suggests that behavioral control often goes along
with receiving social services. He states that all aspects of people's lives often
become regulated once they are in the welfare system including their sexual
conduct, work ethic and how they budget their money. Booth and Booth (1994b)

Tiny Specks in Microscopes 69

who interviewed parents with intellectual disabilities, all of whom were receiving
statutory services, also found that parents recognized a need for support, but
frequently complained about how this support was delivered. One parent that they
interviewed saw the services that they were getting as a source of interference.
Unlike the participants in Booth and Booth's study, however, the parents
interviewed for this study received only voluntary services and yet they
experienced a tremendous amount of interference and social control. One parent
equated receiving voluntary formal support services with living life under a
microscope.
Thirdly, it became apparent from parents' experiences, that social control was
maintained through various mechanisms. These involved hearing through the
grapevine, coercion, power and control, blaming the victim and the victims
blaming themselves.
·Hearing through the grapevine refers to the process of keeping watch on
whose children in the intellectually disabled community have been apprehended
by the authorities. Hearing how other parents with intellectual disabilities had lost
their children seemed to reinforce, for these parents, how it could also happen to
them if their parenting skills were perceived to be inadequate. This experience of
hearing through the grapevine resembles the way in which Mullaly (1993)
describes how people' s behavior is regulated according to order theory. The
difference in order theory, however, is that people' s behavior is kept in line by the
possible threat of incarceration if societal expectations are not met. In this study,

Tiny Specks in Microscopes 70

parents' made an effort to comply with human service requests because of the
possible threat that their children could be taken away if their parenting skills
were judged to be inadequate. They tried their best to be 'good parents' because
they saw what happened to those parents who did not meet the prescribed
parenting standard.
Coercion was used as another method to ensure parents met their parenting
obligations. These kinds of interventions involved the direct use of threats. The
most extreme form of coercion identified was workers threatening to report
parents to the authorities if parenting was inadequate or if the negative behaviors
targeted for change were not up to standard. The behaviors that were targeted for
change by human service workers, in this study, included such things as how
parents' spent their money, how they dressed and disciplined their children and
whether they fed their children a 'proper' diet. Callahan' s work (1993) supports
these findings. She explains that it is primarily the "visible aspects" of parenting
(which is what the parents' examples in this study illustrate) that are often judged
as inadequate. Swift (1995) also agrees that parents are judged on their ability to
fulfill certain parenting tasks which include the more observable parenting
functions described above. Swift notes that if these tasks are not carried out, this
often results in a visit from child welfare workers. It is interesting to note that the
parents interviewed for this study indicated that they had received threats that
their children would be removed if they did not fulfill one or more of their
parenting obligations. Coercion was also applied to ensure, for instance, that

Tiny Specks in Microscopes 71

parents showed up for appointments. The threat in these cases became the loss of
service.
Another strategy employed as a social control mechanism was power and
control. It was used to ensure parents complied with workers' expectations.
Parents described how they had little choice or say in matters regarding what
services to access. They complied with workers' requests because they were
afraid of what might happen if they refused.
Blaming the victim and victims blaming themselves were other ways in which
social control was maintained. Parents in this study cited many examples where
they felt that they had been blamed for the wrong reasons. Booth and Booth
(1994b) noted similar findings in their study. They found that some parents with
intellectual disabilities were criticized by the people that were supposed to be
assisting them. They also found that some parents were fearful that their children
might be apprehended. It is interesting to note that the parents in this study, who
were all receiving voluntary services, and the parents in Booth's and Booth's
study, who were all receiving some type of compulsory service, cited similar
examples. It seems the parents in this study may have had similar experiences to
the parents in Booth' s and Booth' s study because they, in fact, experienced their
voluntary services as involuntary.
The blame the victim strategy described above led to parents blaming
themselves. Parents seemed to internalize this external blame which resulted in
them placing the blame for their difficulties on themselves. They felt that if they

Tiny Specks in Microscopes 72

tried harder they might succeed at being ' good parents' . On the other hand, they
also seemed to feel a sense of hopelessness about their situations because they felt
they might be blamed for parenting difficulties that were out of their control. They
also expressed a sense of powerlessness or hopelessness about their situations
because they felt they had to accept all the formal support offered. If they refused
support they were fearful that they could lose their children to the authorities.
This leads to the fourth interesting finding. Parents seemed to invent ways to
deal with a seemingly hopeless situation because they felt they had little control
over the services they received. They kept quiet, silently ignoring unreasonable
demands, they altered the events in their day to accommodate human service
workers, they used their disability as an excuse to forget appointments to obtain
some personal freedom, or they did what they wanted anyway providing that the
consequences were not too severe.
The adoption of such strategies to deal with the demands of human service
workers raises the issue of whether parents will receive the support they may
require to meet both their needs as well as their children' s needs. There is a risk
that some parents may find the service system so demanding that they develop
ways to avoid it in order to cope. As noted earlier, some parents have had such
negative experiences with service agencies that they avoided them thereby
"cutting themselves off from potential sources of support or help in crisis" (Booth
& Booth, 1994a, p. 31 ). And because it has been reported that support is an

important factor in keeping parents with intellectual disabilities and their families

Tiny Specks in Microscopes 73

together (Booth & Booth, 1994a; Espe-Sherwindt & Crable, 1993), it is important
to hear from parents about their experiences concerning the support they are
receiving. In addition, it is important to ensure that parents feel comfortable with
the support they are getting so that they may access it when they choose.
Limitations of the Study
These findings must be interpreted in light of the following considerations.
First, three parents were interviewed for this study. They all came from the same
geographical area and their services were coordinated through the same office. In
addition, because there was such a small number of parents to select for
participation in this study, and because some parents declined to be interviewed,
the interviewees were not chosen based on varying characteristics which is
recommended when using the grounded theory methodology. For example, all of
the parents participating in this study had one child under five years of age. They
could all read and, at the time of the study, they all had partners. The parents'
ages, however, ranged from the late twenties to the early forties . Ideally, with the
grounded theory approach it would have been better to also select participants
with more than one child. Furthermore, participants selected from different
geographical locations and Ministry offices could have been interviewed as well
as single parents and so forth. Therefore, these findings are limited to those
parents with intellectual disabilities receiving service through the same office and
displaying similar characteristics to the parents interviewed for the study.

Tiny Specks in Microscopes 74

A second factor for consideration is that no formal documentation was
obtained regarding participants' IQs and adaptive functioning. Therefore, it is
possible that the parents interviewed for this study had IQs ranging from
borderline to mildly mentally handicapped. Consent was obtained to review files
to collect this information, but a decision was made not to consult the files based
on one participant's concern about trust and privacy issues.
A third factor that needs to be addressed is the use of in-depth interviewing as
a data collection method. This method of data collection has rarely been used with
people having intellectual disabilities. Booth and Booth (1994b) suggest that
perhaps one of the reasons for this is that researchers assume "that the subjects in
this kind of study should be fairly articulate, able to verbalize and have a story to
tell" (p. 23).
Researchers using in-depth interviews as a means of data collection with
participants that have intellectual disabilities seem to agree, however, that openended questions can be used successfully with participants who have moderate to
mild mental handicaps, providing that the questions are simply phrased (Flynn,
1986, p. 371).
Booth and Booth (1994b) conducted in-depth interviews to learn about parents
with intellectual disabilities child rearing and parenthood experiences and they
report that participants often answered questions with a word, a phrase or a
sentence. They further state, however, that this did not pose a problem in terms of
participants telling about their experiences. Of the three participants interviewed

Tiny Specks in Microscopes 75

for this study, one respondent answered questions with a word or short sentence
while the other two expressed themselves quite fluidly.
Suggestions for Future Research
It is evident that there needs to be more opportunities for parents with

intellectual disabilities to evaluate the services they are receiving. They also need
to be given the chance to provide input into what services they would find the
most beneficial and how they would like those services to be delivered. In
addition, it also seems apparent from the findings ofthis study and Swift' s (1995)
research that more work is needed in the area of societal influences on human
service work practice.
One piece of research that could be done to address some of the above issues
would involve educating human service workers concerning the larger society and
how it influences human service practice with parents with intellectual
disabilities. This education could lead to human service workers becoming more
critical of their practice and the interventions they engage in. It could also change
the nature of their interventions with parents which could have the effect of
altering parents' perceptions of workers. This research could be done in the form
of a comparative study. For example, parents could be asked to talk about their
experiences with human service workers both before and after the human service
worker education and then parents' responses could be analyzed for differences.
Furthermore, it would be interesting to apply the theoretical framework that
was developed from the parents' responses in this study to child abuse cases

Tiny Specks in Microscopes 76

involving parents with intellectual disabilities. For example, one recent child
abuse case that was widely publicized in British Columbia that could be examined
is Vema Vaudreuil' s (Gove, 1995). This research could possibly lead to a deeper
understanding of the factors that contributed to Matthew Vaudreuil' s death.
Vema' s story might also help to shed light on some of the societal problems that
contributed to her tragic situation. Booth and Booth ( 1994b) agree that hearing the
stories or experiences of parents "reveal[s] how their lives are shaped by the wider
society and throw[s] light on the network of social relations to which they belong"
(p.24). More ofthese stories need to be told. This is one way that we will begin to
understand the impact that human service workers have on the lives of parents
with intellectual disabilities.

Tiny Specks in Microscopes 77

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