Challenging Categories: An Ethnography of Young Adults with Down Syndrome in a Community in

179 Pages·2014·1.29 MB·English

by  Abigail K

Challenging Categories: An Ethnography of Young Adults with Down
Syndrome in a Community in Ontario

By
Abigail Kidd

A thesis submitted to the Faculty of Graduate and Postdoctoral
Affairs in partial fulfillment of the requirements
for the degree of

Master of Arts
in
Anthropology

Carleton University
Ottawa, Ontario

© 2014, Abigail Kidd
Abstract
This thesis explores the impact that being categorized into a specific category of
disability has on the lives of a group of young adults with Down syndrome in Ontario. It
is an ethnography of young adults who attend a community-based day program and the
staff and guardians with whom they regularly relate. It also tracks the influence
categories of intellectual disability have had historically, and currently have, on the lives
of individuals with Down syndrome. It shows the ways in which the participants are
complicatedly resisting a disabled, Down syndrome identity, and the ways in which the
program is both complicit in and in resistance to the limitations imposed on these
individuals. This thesis ultimately points to the ways in which social perceptions, power
relations, and widely held understandings of Down syndrome largely determine the
opportunities and experiences of people categorized as having Down syndrome.

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Acknowledgements
While there are many individuals who have supported me as I have completed this thesis,
I first and foremost need to thank my older sister, Gemma. She has been both the
inspiration and driving force of this thesis. She is my biggest cheerleader and best friend.
She is an intelligent, witty, proud, optimistic, compassionate, and motivated person, and
witnessing the successes and barriers she experiences as a young woman with Down
syndrome has been the primary motivation for this project. She supports me
unconditionally and I love her dearly.
I owe a great deal of gratitude to my supervisors, Alexis Shotwell and Jen Pylypa.
Without their support, knowledge, insights, and expertise this thesis would not have been
possible. I feel very lucky to have had a committee made up of female academics whose
approach I both respect and admire.
I would like to thank the program for hosting me. Additionally, thank you to the
participants at the program for sharing their days with me, and the participants’ guardians
for making time to meet with me. The work the program is doing is both unique and
incredibly important.
Finally, I would like to thank my parents for supporting me unconditionally throughout
this process. Particularly, my mother, Janie, who has spent countless editing papers and
being my emotional support throughout my academic degrees.

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Table of Contents
Abstract ...................................................................................................................................................... ii
Acknowledgements...................................................................................................................................iii
List of Illustrations ................................................................................................................................... vi
CHAPTER 1: INTRODUCTION ........................................................................................1
Background to the Research .................................................................................................................... 5
Present Context ....................................................................................................................................... 12
Project Description ................................................................................................................................. 19
Methods .................................................................................................................................................... 22
CHAPTER 2: “TO CLASSIFY IS HUMAN”: THE CATEGORIZATION OF
INDIVIDUALS WITH DOWN SYNDROME .................................................................26
Social Role................................................................................................................................................ 30
Intelligence ............................................................................................................................................... 51
Education ................................................................................................................................................. 57
Conclusion ............................................................................................................................................... 67
CHAPTER 3: COMPLICATING DOWN SYNDROME: RESISTING, REJECTING,
AND DISCIPLINING THE CATEGORY ........................................................................70
Rejection of Down Syndrome ................................................................................................................. 73
Disassociation from Down Syndrome .................................................................................................... 78
Redefinition of Down Syndrome ............................................................................................................ 80
Acceptance of Down Syndrome ............................................................................................................. 84
Identifying Down Syndrome .................................................................................................................. 86
The Program’s Approach to Down Syndrome ..................................................................................... 89
Conclusion ............................................................................................................................................... 92
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CHAPTER 4: DISCIPLINING DOWN SYNDROME .....................................................97
My Role at the Program ......................................................................................................................... 99
Reporting Back on Participants ........................................................................................................... 102
Modeling “Good” Behaviour ............................................................................................................... 107
The Risk of Being a Pedestrian with Down Syndrome ...................................................................... 110
Reminders .............................................................................................................................................. 112
Plans ....................................................................................................................................................... 113
Managing Down Syndrome .................................................................................................................. 115
Stagnation and School .......................................................................................................................... 118
Adult Behaviour and Adult Treatment ............................................................................................... 120
Conclusion ............................................................................................................................................. 128
CHAPTER 5: WORKING AND WORKING OUT ........................................................133
Working ................................................................................................................................................. 135
Working Out .......................................................................................................................................... 150
Conclusion ............................................................................................................................................. 157
CHAPTER 6: CONCLUSION .......................................................................................161
The Program .......................................................................................................................................... 163
Significance of Research ...................................................................................................................... 164
Further Research ................................................................................................................................. 166

References .............................................................................................................................................. 170

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List of Illustrations
Figure 1.1 .......................................................................................................................48
Figure 1.2 .......................................................................................................................49
Figure 2 ........................................................................................................................156

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Chapter 1: Introduction
When I began fieldwork at a day program that facilitates employment and
integrated, daily lives for young adults with Down syndrome, I planned to explore the
ways in which the young adults conceptualized themselves as well as their knowledges,
skills, and capabilities. However, after spending two months at the program gathering
data and sitting down to write about my findings, I found that my goal changed. While I
still focus on the experiences of the young adults I worked with in this thesis, my priority
is to show the ways in which their daily lives are shaped by their categorization as
individuals with Down syndrome. I still aim to explore their self-conceptions within or
outside of a Down syndrome identity and the ways in which that imposed identity shapes
and is shaped by their lived reality. However, my experience with the program and its
clients also led me to explore the ways in which their medical positioning, social
positioning, and the specific positioning within the community and the program all come
together to create a particular experience of what being categorized as having Down
syndrome looks like for individuals.
In this thesis, I will track the social relations, assumptions and implications tied to
their identity, and the power relations that further contribute towards their lived
experiences. I aim to do these things as a means of understanding what exactly being a
young adult with Down syndrome means for these individuals. I will discuss the major
actors and actions that contribute towards the meaning of having Down syndrome for my
participants.
I chose to focus on young adults with Down syndrome for a number of reasons.
First, my older sister by 16 months is a young adult with Down syndrome. She attends
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the day program where I did my research, but was not a participant in the project,
although she is mentioned occasionally within this thesis. As a result of growing up with
her, the implications of her categorization and the barriers she experiences have always
been sources of frustration for me. Experiencing her intelligence, wit, complexity, and
passion have been positive, central aspect of my life. She is the biggest source of my
desire to do this research.
Second, individuals with Down syndrome are often left out of disability activism
and research. They are a significant portion of the population of people with intellectual
disabilities, but they are often either the source of biological research or ignored in favour
of autism research. Additionally, while their presence in the media and general
recognisability results in the majority of people recognizing the disability, the general
public are often ill-informed and unaware of their lived realities. I frequently have people
tell me they “don’t know much about Down syndrome,” and react with surprise when
they find out that the participants of this project work, read, and are learning to cook.
Third, individuals with Down syndrome occupy a unique category. Their
disability has been biologized and medicalized through the identification of trisomy 21.
Their disability is associated with both physical characteristics and intellectual capacity.
They are targeted for pre-natal abortions, but are also widely represented as universally
cheerful, happy individuals. They also have a variety of experiences. Individuals with
Down syndrome have varying cognitive capabilities and different individuals may be
sub-categorized as high or low functioning. Their social skills, interests, talents, motor
skills, and clarity of speech vary. They also have varying experiences of health: some of
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them may have heart defects, lung problems, sleep apnea, or childhood leukemia, while
others may have no health issues.
Their category, then, is complicated. However, trisomy 21 and the physical
indicators of the syndrome solidify and stabilize their abnormal categorization and assign
their membership to the category. That they have the same chromosome-based syndrome
that has been named “Down syndrome” is not contested, but what having this syndrome
means for their lives, experiences, and identities, and what it should mean, is certainly
contested by this thesis.
In order to do this, I think it is important to first define how I understand the
ontology of Down syndrome. I understand the category of Down syndrome as varied and
unstable. By this, I mean that I acknowledge that there is a dominant understanding of
Down syndrome which has been shaped by centuries of historical factors that contributed
towards the creation of the category. This dominant understanding is held as relatively
stable by the culturally prevailing ideologies of the biomedical system, the Canadian
education system, and general Canadian culture. I argue that there are power relations
involved in the conception of the category of Down syndrome that have shaped and
continue to shape the experience of the syndrome for those who are diagnosed. Once
applied, the category works to both enable and disable those with the syndrome. I
contend that the diagnosis of an individual with Down syndrome places a set of inherent
assumptions, expectations, and limitations on the individual. These significantly
influence the individual's social and cultural positioning, resource access, and self-
conceptions.
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I take up Bowker and Star’s (1999) social categorization theory in which they
explain that the enforcing and spread of categories and standards involves negotiations of
force; that is, apparently universal categories are the “result of negotiations,
organizational processes, and conflict” (1999:44). So, while there is a dominant
understanding of the ontology of Down syndrome, this is the case because it has been
constructed and held as stable by these dominant forces, and so the ontology can be
understood as much more varied and unstable than it is presented by the medical and
education systems. There is no one universal experience of Down syndrome and it does
not mean one universal thing. By this I mean that while having Down syndrome may
currently mean experiencing certain learning difficulties within the dominant education
system, experiencing particular co-morbidities of health, and being born with an extra
twenty-first chromosome, for those who have the syndrome it may also mean excessive
disciplining, atypical limitations, frustration and unnecessary barriers within a social
reality and disabling society that creates obstacles for them, or a variety of other things.
This thesis attempts to track the meaning of having Down syndrome for a group of young
adults based on their understandings, the understandings imposed upon them by the
program they attend, and the hegemonic understandings held by Canadian society.
That a dominant understanding of the category exists and is held as the universal,
stable understanding of the ontology is important. If medical, educational, and political
professionals are all in the powerful position to determine how these categories are
understood and used, then the desires, experiences, and social contributions of individuals
with Down syndrome can easily be erased and ignored. I am curious about the impact
that this cultural positioning has on these individuals and their ability to effectively
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