A Thesis Parenting Children with Profound Short Stature in the Post

Home , Dwarfism

A Thesis

Parenting Children with Profound Short Stature in the Post-Genomic Era

Anna G. Neller

Submitted to the Graduate Faculty as partial fulfillment of the requirements for the

Master of Arts Degree in Sociology

______Dr. Mark Sherry, Committee Chair

______Dr. Shahna Arps, Committee Member

______Dr. Elias Nigem, Committee Member

______Dr. Amanda Bryant-Friedrich, Dean College of Graduate Studies

The University of Toledo

This document is copyrighted material. Under copyright law, no parts of this document may be reproduced without the expressed permission of the author. An Abstract of

Parenting Children with Profound Short Stature in the Post-Genomic Era

Anna Neller

Submitted to the Graduate Faculty as partial fulfillment of the requirements for the Master of Arts Degree in Sociology The University of Toledo

August 2016

Previous social science research on profound short stature has primarily centered studies on Achondroplasia – with limited attention being given to other conditions which result in profound short stature such as Osteogenesis Imperfecta, Growth Hormone

Deficiency, and other conditions which may be placed under the generic label “Failure to

Thrive.” This thesis is the first attempt to engage in an interdisciplinary analysis of new diagnostic conditions associated with profound short stature. Employing a grounded theory approach, this study draws from multiple sources of data, including insider research; and seeks to answer the primary research question: what can parents of children with profound short stature teach us about their children’s experiences in the post- genomic era?

Results of this study include the complicated, ongoing process of diagnosing, the infantilization, dehumanization and violence experienced by children with profound short stature, barriers in education and their psychosocial effects, and the diversity of identities adopted by parents in describing their children. In conclusion, recognizing the variety of

iii diagnoses which underlies the community of children with profound short stature is a key step in developing a more holistic perspective that integrates interconnected social, psychological, ethical, medical, disability and embodied issues.

iv For Ethan and Jacob, the lights of my world Acknowledgements

Reach towards something so difficult it requires all of your potential.

(Diana Nyad)

At the heart of this thesis are the stories of parents with children who are profoundly short. Their complex narratives provide glimpses of the social barriers, triumphs, and struggles with identity that impaired children and their families experience. I am extremely grateful for these parents and their children. I would not have able to establish such relationships with these families without the MAGIC Foundation’s support. The organization’s generosity with their time and resources was crucial for connecting to these families. Additionally, I am appreciative of the members of Little People of

American (LPA) who provided information on the many facets of Little Peoples’ lives.

This thesis would have not existed without the guidance and boundless energy of Dr.

Mark Sherry. His consistent support, intellectual insights, and wonderful mentorship encouraged me to continuously pursue excellence and social justice despite emerging challenges. Likewise, Dr. Shahna Arps and Dr. Elias Nigem provided very useful insights and encouragement that were important for the crafting of this work. My family’s confidence in me sustained a steadfast spirit of perseverance. I am extremely thankful for their patience, particularly my sons Ethan and Jacob whose own individual and collective plights with restricted growth inspired my pursuit of disability rights.

v i Table of Contents

Abstract ...... iii

Acknowledgements ...... vi

Table of Contents ...... vii

List of Tables ...... viii

List of Abbreviations ...... x

1 Introduction… ...... 1

1.1 Importance of the topic ...... 3

1.1.1 An important and underexplored issue ...... 3

1.1.1.1 Exploring unique dynamics of families with disabled…..

2 Theoretical Framework ...... 28

1.2 Introduction…...... …..……28

1.2.1 Social Model of Disability ...... 29

1.2.2 Minority model of disability ...... 39

3 Methods...... 55

1.3 Introduction ...... 55

1.4 Qualitative Methods ...... 55

1.5 Grounded Theory ...... 56

1.6 Key Research Question………………………………………………………57

1.7 Subsidiary Questions………………………………………………………...57

vii 1.8 Sources of data ...... 58

1.8.1 Insider research ...... 58

1.8.2 Pilot interviews ...... 63

4 Results and Analyses ...... 74

1.9 Disability……………………………………………………………………..75

2.0 Impairment effects…………………………………………………………...78

2.1 Diagnoses…………………………………………………………………….82

2.2 Disability identities…………………………………………………………..86

2.3 Normalization, Medicalization and Biopolitics……………………………...89

2.4 Issues not identified in previous research……………………………………93

2.4.1 Individuality………………………………………………………..93

2.4.2 Maternal blame…………………………………………….96

5 Conclusion ...... 106

References ...... 116

A Glossary of Medical Terminology ...... 111

viii List of Tables

1.1 SEAwall of Institutional Discrimination First Table in Chapter 2 ...... 32

ix List of Abbreviations

GI Specialist ...... Gastroenterologist

HGD ...... Human Growth Hormone Deficiency

IUGR ...... Intrauterine Growth Restriction

LPA ...... Little People of America

OI ...... Osteogenesis Imperfecta

PWD ...... People with Disabilities

RSS ...... Russell-Silver syndrome

SGA...... Small for Gestational Age

UPIAS ...... Union Of The Physically Impaired Against Segregation

x Chapter 1

Introduction

The post-genomic era, associated with the development of new diagnostic categories (and new advocacy organizations associated with these medical diagnoses) has prompted the need to re-explore many experiences of health, illness, and disability. This thesis is the first attempt to engage in an interdisciplinary analysis of new diagnostic conditions associated with profound short stature. The interdisciplinary framework adopted in this paper involves a combination of insights from medical sociology and bioethics (with regard to the power of normalization, medicalization and power, as well as two major theoretical frameworks from disability studies (the social and minority models of disability). Without such a holistic, interdisciplinary perspective, there is a serious failure to integrate the messy realities of interconnected social, psychological, ethical, medical, disability and embodied issues.

Applied research on the social dynamics associated with profound short stature is rare; there are only a handful of published papers in the last ten years (Adelson, 2005; Guse &

Harvey, 2010; Shakespeare, Thompson, & Wright, 2010). Each condition that leads to profound short stature has been studied in the medical literature (for instance, there are 1 medical studies on Russell Silver Syndrome, Turner Syndrome, and so on), but the topic is under-studied from a social science perspective. Unfortunately, previous social science research on profound short stature has been “chondrocentric” – primarily centering studies on Achondroplasia – with limited attention being given to other conditions which result in profound short stature. Conditions such as Osteogenesis Imperfecta, Growth

Hormone Deficiency, and other conditions which may be placed under the generic label

“Failure to Thrive” have been ignored. The organizations which have previously been studied also reflect this bias.

Ablon focused her ground-breaking research on the LPA, an organization she acknowledges as being mainly composed of people whose most common impairment is

Achondroplasia (Ablon, 1981, 1990). This limitation means that those children who later develop and/or are diagnosed with profound short stature after the first year of life (such as people with growth hormone deficiencies) have not been included, recognized or discussed in analyses of people with profound short stature and their families. This research addresses the gap in previous literature by exploring the experiences of people with profound short stature stemming from conditions other than dwarfism.

There is a need for an updated, more holistic approach to profound short stature. It is necessary to acknowledge the wide variety of diagnoses given to people with profound short stature. Such diagnostic categories include not only Achondroplasia, but other conditions such as Russell-Silver Syndrome, Small for Gestational Age (SGA) and

Intrauterine Growth Restriction (IUGR), Pseudohypoparathyroidism, Turner Syndrome, 2

Idiopathic Short Stature, and Panhypopituitarism, and Human Growth Deficiency (HGD)

Appendix A provides a glossary of terms which describes each of these diagnoses.

Regardless, a recent update on the page of the LPA suggests that only 70% of people with profound short stature experience Achondroplasia (Little People of America, 2016).

Importance of the topic

An important and underexplored issue

The experience of profound short stature is not as uncommon as some people might think. The LPA suggests that there are 30,000 Little People in the United States (Little

People of America, 2015). This is a significant number; the size of the population alone means the topic deserves attention. One study indicated that the prevalence of

Achondroplasia ranges from 0.36 to 0.60 per 10,000 live births and the prevalence of thanatophoric dysplasia ranged from 0.21 to 0.30 per 10,000 live births (Waller et al.,

2008). Many other conditions also cause profound short stature, including Turner

Syndrome and others.

While there are a small number of academic studies on the social experiences of people with Dwarfism, this group is only one sub-section of the wider population of people with profound short stature. According to one study, “there are serious gaps in the available literature and research evidence is sparse” (Thompson, Shakespeare, & Wright, 2008, p.

1). This thesis is far more inclusive than any previous studies, because it includes a 3

number of diagnoses other than Achondroplasia. In particular, it includes children who develop later and/or are diagnosed with profound short stature after the first year of life

(such as people with growth hormone deficiencies). This group of people with profound short stature have not been included, recognized or discussed in previous social science analyses.

Another reason why this topic is important is because there are serious health effects of profound short stature. One study surveyed 437 adults with Achondroplasia, focusing on their functional health status and found that chronic back complications were the most commonly reported secondary conditions related to Achondroplasia (Mahomed,

Spellmann, & Goldberg, 1998). Other associated conditions included persistent allergies/sinus problems, arthritis/rheumatism, hearing impairment, spine deformity, sleeping difficulty, chronic neck pain, and paralysis/weakness of upper and/or lower limbs. Musculoskeletal problems, spinal deformity, chronic pain, and related neurological complications were the most common and significant determinants of physical function and health status of respondents.

In 2010, the medical effects of profound short stature were also explored via a survey of

92 people, including 81 with skeletal dysplasia conditions (Shakespeare, et al., 2010).

The study reported that 24 % of participants with Achondroplasia received spinal surgery because of spinal stenosis. Participants also commonly reported depression due to feelings of social exclusion and experiences of pain stemming from health conditions associated with dwarfism. Roughly two-thirds of this cohort underwent one or more 4

surgical operations associated with Achondroplasia. The three most common surgeries included tonsillectomy/adenoidectomy, laminectomy of the lumbar spine, and osteotomy, but symptoms commonly persisted after surgery. For example, more than 70% of people after lumbar laminectomies described chronic back problems and 50% reported persistent weakness/paralysis of their limbs. By middle-age, Little People scored significantly lower in functional capabilities, associated with an increase in musculoskeletal disorders such as spinal stenosis and chronic lumbar pain. As they age, these health differences persist and people with Achondroplasia, on average, have shorter life spans.

Regardless of the cause, profound short stature has important effects in terms of individual and social experiences, including identity, disability and impairment, social exclusion, and stigma. These experiences will be discussed in more detail in the review of literature in Chapter Two, but it may be useful to initially state that the cultural abjection of little people has a long history. From the “Freak Shows” of yesteryear

(Bogdan, 1990) to contemporary reality television shows or “midget wrestling” shows which enfreak and fetishize people with profound short stature, the cultural objectification of Little People has been widespread and long-lasting (Backstrom, 2012;

Kruse, 2003; Pritchard, 2014). Garland Thomson suggests that one of the cultural backdrops to such representations is associated with profound physical impairments in general - their representation as sensational, exotic or “entertaining in their difference”

(Garland Thomson, 2001, p. 343). Disabled people (such as those with profound short stature) have been enfreaked, marginalized, ridiculed, stared at, and disrespected in many ways (Sherry, 2005). 5

Exploring unique dynamics of families with disabled children

It is important to explore the experiences of families of disabled people as well as the individuals themselves, because family dynamics are deeply influenced by the presence of a disabled child (Chakravati, 2015). Disabled children undoubtedly experience a range of unique experiences (in terms of inclusion/exclusion, embodiment, and identity), but their families are also affected. This familial experience is not simply a matter of secondary stigmatization – to reduce the issue to stigma avoids issues such as gender and care, unique forms of parental involvement and advocacy, additional costs associated with raising a disabled child, and problematic notions of ‘dependency.’ Differences among the experiences of disabled children may also be effaced in an all-encompassing conceptual approach which focuses on stigma.

Often the gendered dynamics of care influence the relationships between parents and their disabled children. The majority of informal care work in the home is done by women (Barnes & Mercer, 2003; Morris, 1993). Chakravati suggests that feminized notions of women “caring for” as well as “caring about” their disabled children mean that mothers are generally held responsible for disabled children (Chakravati, 2015, p. 33).

Sometimes, the presence of disabled children is positioned as a “burden” on these women

((Barnes & Mercer, 2003). However, this discourse is deeply problematic. It is essential to avoid all-encompassing stereotypes of disabled people as dependent burdens; human relationships are always multidimensional, interactive, and interdependent. In the words

of Swain, French, and Cameron, “disabled people give as much as they receive” (Swain,

French, & Cameron, 2003, p. 80).

To reduce a disabled child to the role of a “burden” on a family is to Other them

(Shakespeare, 2000). It also frames disability exclusively in negative terms, a perspective which is far less complicated than the lived reality of disabled people. Underlying such assumptions is an assumed linkage between disability and grief – a grief which is assumed to be never-ending, in the case of permanent impairments (Mallett & Runswick-

Cole, 2014). Disablist assumptions locate the source of such grief in the child’s impairment, not disabling barriers (Oliver & Barnes, 2012). And yet one study revealed that the majority of mothers framed ‘caregiver burdens’ not in terms of psychological exhaustion and distress associated with the child’s impairment, but instead saw them as a direct result of social barriers. As well, in spite of these disadvantages many mothers frame their parenting experience as advantageous and enlightening. They described a fresh sense of social and self-awareness where they learned to effectively prioritize, strengthened their family relationships, and developed a deeper appreciation for life

(Green, 2007).

There are undoubtedly additional costs associated with raising a disabled child – costs which are estimated to be three times as much as the cost of raising a nondisabled child

(Oliver & Barnes, 2012, p. 138). These costs are (unfairly) placed on families, rather than being seen as an essential element of the State’s responsibility to ensure that the rights of the child to health, welfare and full participation in society are protected. In spite of these 7

costs, the participation of parents (particularly mothers) in the labor force is reduced when the family includes a disabled child. Oliver and Barnes cite statistics which suggest that only 3% of the mothers of disabled children are in full-time work, compared to 22% of mothers of nondisabled children (Oliver & Barnes, 2012, p. 138).

Disabled children require some supports which are similar to other children. Middleton has summarized some of the supports that young disabled people in her research identified as important to them – her list is reproduced verbatim below:

Young people want adults who:

- Stick up for them - See them as individuals - Have a sense of humor - Are good listeners - Are not embarrassed by their disability - Will talk to them about being disabled - Talk about their abilities, rather than make assumptions about what they can or cannot do - Support and encourage achievements - Do not take control away - Do not impose religious or ideological beliefs - Help them develop social and relationship skills - Help them to meet other children, both disabled and non-disabled - Do not trivalise their concerns - Are honest and straightforward - Make them feel ‘safe’ in the sense of being trustworthy - Do not gossip about them - Do not smoother them - Notice when they are unhappy - Do not act on information without consulting them - Do not pity, humiliate or abuse them - Don’t make promises they can’t keep (Middleton, 1999, p. 29).

The first item identified by these disabled children, “stick up for them,” reflects one of the important differences between the needs of disabled children and nondisabled 8

children: disabled children need additional parental advocacy as they negotiate through medical, educational and welfare systems. Middleton identified schools as a particularly important site where inclusion or exclusion can effect the lives of disabled children; she regarded playtime as well as in-class activities as crucial. However, inclusion does not necessarily occur without parent activism. As advocates, parents are uniquely placed to challenge unjust and discriminatory practices – such advocacy has been a driving force behind many changes in disability legislation, policy, and practice (Berthiaume, 1995;

Fleischer & Zames, 2011).

“The parents movement” (Leiter, 2012, p. 6) could be considered the first wave of the disability rights movement. In the historical context of the widespread institutionalization of disabled children, she discusses how parental activism facilitated educational advancements for disabled children. For instance, during the 1930’s and 1940’s, mothers began advocating for equal opportunities for their disabled children at both the local and federal levels by organizing grassroots parent groups and personally contacting public officials. . Additionally, coalitions and collaborations which occurred in the 1980’s involved both parent and professional voices as well as disabled people lobbying for additional changes in disability policies. The collaboration of disability rights activists ultimately led to the passage of the ADA.

According to Lopez Milina, three of the factors which have led to the unique and extensive involvement of parents of disabled children in health, educational and social welfare systems are:

1. From a moral perspective, some institutions and clinicians strongly believe in the

need for parental involvement in their children’s therapeutic affairs, as opposed to

reducing them just to the role of a guardian.

2. Despite dense institutional bureaucracies, parents often assume the roles of

‘experts’ regarding their child’s holistic needs because of they are determined not

to have their child’s needs ignored.

3. The increasing demands of social services and frequent arguments regarding

levels of coverage means that governmental agencies have shifted a great deal of

their responsibility onto families (Lopez Milina, 1995, p. 124).

As well, Leiter emphasizes that disabled youth today are the first generation of disabled children who are growing up after the implementation of the Americans with Disabilities

Act of 1990 (Leiter, 2012). She suggests that while previous generations perhaps benefited from changes in federal policies, the current era is the first to experience the entire benefits of such refinements in disability public policies and civil rights legislation.

Because of these improvements in disability policies, the present generation of disabled youths is better positioned to thrive in local communities and achieve academic and employment success. They are also the first generation of children who have been educated in a context where federal policies officially have encouraged disabled youth participation in the planning of their education and early career goals. 10

In 2004, Congress updated requirements to the Individual Education Program mandating young disabled people to not only participate in their curriculum development, but also to be thoroughly involved in their educational choices beyond the context of high school.

Such modifications revolutionized the idea of disabled youths as active decision-makers in their postsecondary goals. However, Leiter states that the language used in Individual

Education Plans often fail to specify the content of a students’ participation leading to subjective interpretations in terms of youth as active decision makers. She conceptualizes three types of youth participation: nonparticipants, technical participants, and vocal participants.

Nonparticipants are defined as youths who did not attend their IEP meetings; whereas technical participants are described as youths who attended their IEP meetings, but did not contribute to discussions. Vocal participants are those who both attended their IEP meetings and expressed their concern. Her findings reveal that over one-quarter of the young people she studied were nonparticipants. More explicitly, none of the nonparticipants with intellectual disabilities expressed concerns about not attending their

IEP meetings and indeed, they were content with their parents attending on their behalf.

In contrast, nearly half of those who did attend such meetings vocalized their concerns.

Leiter also observed “technical participants” who never communicated during meetings, which she suggests demonstrates disability discrimination. For example, the disability accommodation needs of a student with a hearing impairment were ignored during

discussions. According to Leiter, facilitated communication methods are commonly refused at school and IEP meetings. She described one occurrence where a mother insisted that her daughter be able to use this method, so the school staff left the room.

This section of the thesis has explained the importance of the topic and has started to unpack many of the complex issues associated with parenting, disability, impairment, education, and identity. These issues will be explored in greater detail in the later chapters of the thesis. Before going any further, it seems prudent to define some of the key terms used in this thesis.

Definitions

Disability and impairment

There are two, somewhat different, definitions of “disability” in the field of disability studies (Sherry, 2007). The first comes from the social model of disability, which has had an unmatched influence on disability studies, and it separates impairment (medical conditions) from disability (the barriers which prevent disabled people from participating fully in society). Those who subscribe to a social model approach want to emphasize the key role of such disabling barriers – they are regarded as the main reason why people with impairments cannot fully participate in society – so they utilized the term “disabled people” to emphasize that people are disabled by such barriers. The second approach, more common among scholars who adopt a “minority model” of disability, identifies disability as an identity. Those who subscribe to a minority model positioned use 12

“people with disabilities” as their preferred term. Unlike the social model which emphasized the importance of being “disabled” by barriers, this alternative – known as person-first language – was used primarily to emphasize that disabled people are indeed

“people” and not an inhuman Other.

Little People

The generic label “Little People” is often used to describe people with profound short stature. The definition of “Little People” used by the Little People of America (LPA) is

“individuals who for genetic or hormonal reasons grow to a height of less than 4 feet 10 inches tall” (Little People of America, 2013). However, it is difficult to precisely conceptualize the term “dwarf” and/or “Little People” because a broad range of subgroups may or may not identify as being a “dwarf”. Thus there are several variations in definitions of the term – or more specifically, those who identify as a little person:

Even defining who is a dwarf is not a simple matter. Various height levels have been cited through the years. These days, a dwarf is commonly described as someone 4'10 " or under as a result of a medical condition. However, because any cutoff must be somewhat arbitrary, persons just a bit taller whose genetic makeup, bodily characteristics, and medical problems are identical diagnostically to a given dwarfing condition are included” (e.g. a 4 '11 " person with a gene for diastrophic dwarfism and arthritic joints) (Adelson, 2005, p. 3).

The terms “dwarf,” “Little People,” and “profound short stature” are all socially constructed. Globally, people of short stature identify both individually and collectively with various labels and definitions. Traditionally, in the United States people of profound short stature often identify as “Little People” or “LP”. However, in much of Europe the phrases “persons with restricted growth” and/or “short stature” are more common

(Adelson, 2005). The term “short stature” is used in Europe – but when it is used in North

America it is more common to see the phrase “profound short stature.” Since some people may not be inclined to adopt a specific label such as “Little People,” “dwarf ” or person with “profound short stature” (and because these terms are ambiguous), reports of such conditions may not be accurately reflective of the entire population.

Theoretical Framework

This thesis relies on a combination of multiple and overlapping theoretical approaches, particularly the social and minority models of disability, as well as studies of the body situated at the intersection of normalization, medicalization and biopolitics. Each approach has a different contribution to make when answering the issues of “what the problem is of disability, who holds the problem, and avenues that better address the problem” (Olkin, 1999, p. 24). The key contribution of the social model of disability – its emphasis on disability barriers – has been discussed above. The key focus of the minority model of disability is highlighting the ways in which people with disabilities are a minority group. Both of these theoretical approaches to disability will be discussed in detail in Chapter Two, the literature review. The thesis also engages with some of the theoretical contributions from bioethics, medical sociology, and the French theorist

Michel Foucault (Foucault, 1977, 1980a, 1980b, 2012), in order to more fully explore issues of normalization, medicalization, and biopolitics. These studies raise ethical issues such as the abortion of disabled babies highlight the way that people with genetic conditions are devalued. 14

Methods

The thesis utilizes qualitative methods that rely on grounded theory. The key research question which the thesis seeks to explore is “What can parents of children with profound short stature teach us about their children’s experiences in the post-genomic era?” The subsidiary questions are:

• How has the development of new diagnostic categories in the post-genomic era

affected the ways in which children with profound short stature are diagnosed?

• Are there any unique forms of objectification which these children experience?

• Do parents report any particular psychosocial effects of this experience?

• What terms do the parents of children with profound short stature consider

appropriate for their children, and what identities do they try to foster?

• What can parents teach us about the social construction of “little people”?

Unlike a more traditional approach which begins with a hypothesis and tests whether that hypothesis is reliable and valid, the grounded theory approach used in this thesis adopts a more flexible approach, as it explores the ways in which people understand their own experiences, without imposing a preconceived theoretical perspective. The ‘answers’ to the questions emerge from the long-term engagement of the researcher in the field.

These questions are answered through multiple sources of data, including: 15

– Insider research;

– Pilot interviews with an adult little person, a spouse, and parent;

– Engaging with gatekeepers;

– Facebook groups;

– Internship with the MAGIC Foundation;

– Online survey of members of the MAGIC Foundation;

– Discussions with adults who have profound short stature;

– Autoethnographic reflections on my own children’s experiences.

Each of these sources of data is discussed in detail in the Chapter Three, the methodology chapter of the thesis.

An autobiographical introduction

I have twin sons who both were diagnosed with pituitary dwarfism at the age of 2½. For the first year of their lives, they persistently remained at the negative two standard deviation mark. Simply put, since they were so small their height and weight percentiles were not even included on the growing charts. By age six months, each of them weighed eight pounds. For the first year of their lives, I experienced immense frustration and confusion with their pediatricians and nurse practitioners because of their unreceptiveness regarding the concerns I had about my sons’ growth. Likewise, after speaking with other mothers of children with profound short stature they expressed their dissatisfaction with practitioners’ consistent dismissal of their concerns. The entire diagnosis process was indeed tedious and at times the outcomes seemed uncertain. Before the diagnosis of 16

pituitary dwarfism, they received many other diagnoses to explain their small stature including Small for Gestational Age and Failure to Thrive. And additionally they have other impairments such as poor muscle tone, delays in fine and gross motor skills, learning disabilities, speech difficulties, and visual processing disorders.

Intersections of income and disability are important. Since my sons received Medicaid, their choices in clinical care settings were limited. The clinic they were registered patients at operated on a system of rotating pediatricians or nurse practitioners. Each appointment my sons encountered a new clinician, so expressing these anxieties about their growth was very problematic. One particular occurrence was at their nine-month well-check. When I voiced my concerns to the assigned pediatrician for that appointment, a white man he commented “Well you are really tiny, so I am sure they aren’t going to be very tall. I wouldn’t worry.” Finally, at their 12-month routine checkup, a white woman who was the scheduled Physician Assistant recognized their

“delayed growth.” She said, “They are very small. Are you just giving them juice all the time?” I said, “No. I give them extra bottles and I even put rice cereal in them to get them to gain weight. I have mentioned my concerns about their growth since their six month checkups.” She then requested that I return once a month to weight and measure them. For the next six months, they had scheduled monthly appointments to monitor their weight.

At age 1½, my sons were referred to a pediatric gastroenterologist (GI specialist). My sons had an appointment once a month with the GI specialist to be weighted and 17

measured. Part of this appointment consisted of talking with a dietician to discuss their eating habits. The dietician offered a high-fat, high calorie menu for them to gain weight.

The food list consisted of what are traditionally considered “unhealthy” foods including ice cream, coconut milk, and even pastries such as donuts. I was actually very concerned about this menu because it included processed food items. Nonetheless, I closely followed this high fat food plan in hopes that they would grow. Since my sons were still not growing “normally” the doctor prescribed my sons Duocal, a high-calorie, protein- free nutritional supplement. I was instructed to place a scoop in each beverage they drank and to incorporate it in any type of liquid food item or mix such as pancakes or yogurt.

When my sons were still not growing at a steady rate, I was instructed to write a food journal entry for both sons. Each meal I was instructed to write a detailed description of their calorie intake and portion size. I also had to report weekly to the dietarian to provide detailed accounts of their eating habits. When I asked both the dietarian and the GI specialist what next steps would be conducted if the diet plan yielded no success in weight gain both said “We will have to hospitalize and tube feed them to ensure they are receiving adequate nutrition for weight gain and growth.” Obviously, I was very worried about the possibility of hospitalization. I felt both the GI specialist and dietician did not trust my parenting skills.

After one year of maintaining a food journal and rigidly following high calorie and fat diet regiments, my sons still had made little progress in their growth. They remained at the standard deviation negative two mark for their weight and height. The GI specialist 18

then ordered an endoscopic biopsy to detect Celiac Disease – despite that I firmly told him my sons exhibited no symptoms of this condition. When the results from their endoscopic biopsy revealed they did not have Celiac Disease, they were referred to a pediatric endocrinologist. The pediatric endocrinologist ordered a series of uncomfortable, extensive tests to detect inadequate levels of hormones that could affect growth. Interestingly, when the pediatric endocrinologist discussed their results he noted that one twin did indeed secrete inefficient levels of growth hormone and therefore was

Growth Hormone Deficient or had Pituitary Dwarfism. However, while the other twin produced lower levels of Growth Hormone it still did not meet the requirements of being diagnosed with Pituitary Dwarfism. Nonetheless, the doctor diagnosed him with Pituitary

Dwarfism, so that he was “insurance eligible” to receive Growth Hormone Therapy

Replacement.

In addition to the healthcare challenges I experienced during my sons’ ambiguous states of health, other social barriers such as rigid work environments and limited family support further complicated my parenting. These obstacles began early on in my sons’ lives. After two weeks of being in the neonatal intensive unit, their father stopped visiting the twins commenting that it was “too much for me[him] to handle.” Since then, their father has rarely attempted to make contact with the twins. The aftereffects of being single parent of disabled children cross over in different dimensions of my life. It was difficult to receive time off of work in order to take them to weekly occupational, speech, and physical therapy appointments.

I was working 40 hours a week, was the sole care provider for my sons, and I was completing college courses, so scheduling my sons’ doctor’s appointments was extraordinarily overwhelming. Not only were time constraints a barrier for accessing healthcare for the twins, but also my interactions with people such as my supervisors. For example, when I requested time off for necessary, more extensive appointments such the endoscopic biopsy my supervisor at the time would not permit me to request the time off of work. Frequently, I had to barter with a coworker to exchange shifts, so that I could attend their surgery.

Despite these challenges, my sons and I have overcome each barrier. Not only did they survive these hardships but they are thriving. Currently, they are no longer receiving rehabilitative therapy services but they are on IEPs in their school. This turning point is a major development in their success because since birth they have received extensive and ongoing rehabilitative services. Also, the doctors and I are pleased with their physical growth since we began Human Growth Hormone Therapy. While I may be criticized for reverting back to a medical model (and normalizing) approach in regards to these successes, there cannot be any doubt that these treatments have had a beneficial effect on their overall health.

As a mother of disabled children, I want my twins to be their version of the very best whatever that might be. And I think these developmental milestones indicate something more complex than a binary of medical and social models. I acknowledge that in some aspects they may continue to not meet average, normalized standards. But rather than 20

reducing Growth Hormone treatments to a ‘normalizing’ procedure for height, I see them as contributing towards better overall health. The holistic benefits of such treatments include improved speech and muscle tone.

Both boys have vision impairments, and wear an eye patch for two hours a day. They do not need operations; such procedures would only be cosmetic and would not improve their vision according to their ophthalmologist. They do have academic accommodations

(as a part of their IEP) for these impairments. They sit at the front of the class, and receive printed copies of material which is written on the board. To ignore such unique embodiment is to disregard impairment effects. Profound short stature is not simply associated with height; it is often connected to other impairments, accommodation requirements, and embodied experiences. These insights from my twins’ lived experience have enabled me to better understand the complex medical needs of other children with profound short stature – a fact that definitely enhanced my understanding of, and relationships with, the research participants.

Jacob has a very gentle and eccentric spirit. He has a knack for art and is very resourceful with constructing unique pieces of art from disparate objects. For example, he likes to take empty shoeboxes and construct homes for his action figures and stuffed animals. His first grade art teacher actually has displayed many of his works in the classroom because of his remarkable creativity. On multiple occasions, his teacher has emphasized her amazement of Jacob’s high level of patience and his limited frustration when completing tedious, visually demanding tasks. Although he struggles with his vision, both his 21

teacher and I described his penmanship as close to prefect. If he makes any type of error with his writing, he quickly erases and rewrites.

His artisan spirit is likewise revealed in his whimsical taste. The Nightmare Before

Christmas is positively one of his most cherished films, so much in fact that he is fanatical about pumpkins and Halloween regardless of the season. When he picks out his outfit for the day, often it does not match, but actually clashes. I am now accustomed to the peculiar stares of strangers and even family when they observe Jacob toting around an array of small trinkets and household items. For example, he likes carrying around laundry detergent caps that are yellow since that is his favorite color; and recently he has converted a small, clear sewing case kit into a “suitcase” for his puppy, where he has placed random objects in it such as small rock pebbles and Legos.

Jacob’s nurturing soul and his ability to empathize with others also makes him extraordinary. Along with his prized “puppy” – a tiny stuffed dog he likes to sniff as he sucks his thumb while falling asleep – a collection of tattered stuffed animals rests on his bed. He cares for these soft toy puppies and cats as if they were real, creating families of animals where each has a role of being “mama pup” or “baby pup.” He also loves birds and birdhouses in particular. In his room, he proudly displays his collection of birdhouses. If I am ever having a chaotic or stressful day, Jacob reminds me to relax and be patient.

Ethan has a genuine thirst for knowledge and a heart for learning. His inquisitive mind produces many questions I do not have the answers to such as “Where is the spleen in the body?” or “Is the eye attached to the brain?” It is his choice in television programs and films that really reflects his curious and probing nature. Often, he watches How It’s Made and he even enjoys Untold Stories of the ER. Also, he is fascinated with bones and

Egyptian artwork and culture, particularly mummies. Each time we visit my work he is fixated on the displays of animal bones and the Anthropology department’s bulletin board of various cultural artwork. When he grows up he wants to be an archeologist and construction worker.

A team of IEP professionals stated that Ethan has learning disabilities, but interestingly he scored at the genesis level for spatial visualization abilities. Early in his life, these skills were not as well developed when compared to his peers of the same age; in fact, he received occupational therapy for a number of years because of his ‘poor’ gross and fine motor skills such as his difficulties with shoe tying, writing, and putting together age- appropriate puzzles. This incidence reveals the subjective nature of abilities and intelligence since his IQ score – a test of inherent cognitive capabilities – does not reflect his history of struggling within the same area.

Nonetheless, Ethan is so gifted with assembling things that I often ask him for assistance because ironically this is a major shortcoming in my abilities. Frequently, he helps me with putting together his toy sets and even household projects. And Ethan is eager to help with these tasks. It is in his nature to be generous and supportive. Such assistance from 23

my disabled son contradicts the notions of disability as a ‘burden.’ Rather than suggesting that the parents of a disabled child experience ‘caregiver burden’, this example illustrates the complexity and reciprocity of the relationship. Ethan is actually making my daily tasks easier.

Together the twins are the closest of companions. Sometimes I will see them look at one another and begin to burst out bouts of uncontrollable laughter without a clear expectation for the cause of such humor. They enjoy playing countless hours of

Mindcraft video games and collaborating on art projects. When they play this game, they create matching characters and say “look we are twinsies.” At night, they like to cuddle in the same bed despite having separate beds. And they cannot initiate a task or project without the other. Frequently, they ask me who was born first and where each twin was in my stomach. Even if they get into a quarrel they quickly resolve it and resume playing.

While they share a tight kinship, I do encourage them to forge new friendships with peers. But it is difficult for them to momentarily detach from each other. However, I am happy that they share such a tight bond. This intimacy I feel has been the major catalyst for their success in terms of their spiritual, mental, and physical growth. It is a true honor to be their mother. I believe our experiences with social barriers and even their impairment effects have cultivated a sense of wisdom and gratitude that surpasses the common measures of being appreciative. I use their experiences to instill in them compassion and humility.

These experiences, and more, gave me a profound sense of the difficulties – and rewards

– of parenting children with profound short stature. During this research, I sometimes found it easy to develop relationships with parents and families since I too was a mother of children with profound short stature. I believed my knowledge of the profound short community to be more intimate and in-depth than ‘outsiders.’ But as the research further developed it became apparent this identity was not fixed. Although I considered myself and sons as members of the profound short community, in some aspects I was and was not depending on organizational perceptions and bureaucratic guidelines. The different reactions that I encountered when engaging with the MAGIC Foundation and LPA demonstrated this fluidity in social inclusion and exclusion.

Having given a brief narrative about my own experiences (which undoubtedly provided me with the motivation to explore this topic), it is clear that the results of this thesis will inevitably be informed by my own experience, positionality, relationships with the research participants, and eligibility for membership of both the LPA and the MAGIC

Foundation. Chapter Three, the methodology chapter, will frame the methodology literature on ‘insider research’ as well as other literature on qualitative methods which are informed by grounded theory.

Chapter Outline

This introductory chapter has provided a background to the topic, indicating its importance in terms of the size of the population of people with profound short stature, the serious health effects of this impairment, and the physical and attitudinal barriers experienced by people with profound short stature. It has also emphasized that their social experiences are under-explored. Chapter Two of the thesis will discuss the theoretical framework adopted in the thesis, which involves an amalgam of disability studies, as well as wider theories of normalization, medicalization, and biopolitics.

My personal motivation for studying this topic, as the mother of twins who have pituitary dwarfism, has also been discussed, and my ‘insider’ position has been identified as a topic which deserves more attention in Chapter Three, which discusses the research methods adopted in the thesis. Chapter Four discusses the results of the study, which include: the diversity of conditions which might lead to profound short stature; the difficulty getting an accurate diagnosis (and the maternal blame which often accompanies such a diagnosis); the infantilization, dehumanization and violence experienced by children with profound short stature; barriers in education and their psychosocial effects; and the diversity of identities adopted by parents in describing their children – a situation which is far more complex than suggested by the minority model of disability. The failure to develop a more comprehensive understanding of the range of identity options available to people with impairments is one of the limitations in the literature which will be discussed in more detail in the following chapter. Chapter Five, the Conclusion, summarizes the importance of the study in terms of its theoretical, practical and methodological importance, but also identifies key areas for further investigation.

Conclusion

This introduction has outlined the importance of this topic and has explained that the advent of the post-genomic era, with new diagnostic categories and new advocacy organizations, means that there is a need to explore the variety of conditions that may cause profound short stature. This thesis breaks new ground in developing an interdisciplinary understanding of such diagnostic conditions. The interdisciplinary framework adopted in this paper involves a combination of insights from disability studies and other approaches to medicalization, normalization, and biopolitics. The next chapter will outline the interdisciplinary theoretical framework for the study in more detail.

Chapter 2

Theoretical Framework

Introduction

This chapter summarizes the theoretical framework which is utilized throughout the thesis – an amalgam of dominant approaches within disability studies (in particular the social model and the minority model of disability), supplemented by some of the theoretical contributions from studies of the body, normalization, medicalization and biopolitics. These studies are often found within medical sociology, sociology of the body, and bioethics. While the primacy of disability studies should be apparent, given the topics being explored in this thesis, it is nevertheless necessary to expand this body of literature in order to engage more fully with ethical debates over devalued bodies (for instance, the widespread abortion of disabled fetuses), as well as engaging in a more thorough discussion of medicalization as a social process. This set of literature has been strongly influenced by the work of the Foucault in terms of power and the body

(Foucault, 1977, 1980a, 1980b, 2012).

Social Model of Disability

The foundational work of disability studies involved the development of a “social model of disability,” which was primarily influenced by the Union of Physically Impaired

Against Segregation and their work was made even more popular by its endorsement by leading disability studies scholars such as Mike Oliver, Colin Barnes and Len Barton

(Barnes, 1996, 2002, 2008, 2012, 2014; Barton, 1999, 2003; Oliver, 1990, 1992, 1996,

1997, 2004, 2006, 2009a; Oliver & Barnes, 2012; Oliver & Sapey, 2006; Union of

Physically Impaired Against Segregation, 1976). The contribution of UPIAS has been widely acknowledged by other scholars as well, as the following sample of citations suggests (French & Swain, 2012; Goodley, 2011; Mallett & Runswick-Cole, 2014;

Michalko, 2002; Priestley, 2003; Reeve, 2004; Shakespeare, 1993; Thomas, 1999, 2007).

The principal contribution of UPIAS was to separate impairment (medical conditions) from disability (barriers, prejudice/stigma). This conceptual distinction has been called

“the big idea” of the disability movement (Hasler, 1993). It spread like wildfire throughout the disability movement and the field of disability studies. The social model became the major theoretical approach of the field - it was the basis of so much academic literature that it is impossible to name all the scholars who adopted it or engaged with it.

However, the following citations are indicative of its influence (Barlow & Harrison,

1996; Baron, Phillips, & Stalker, 1996; Bochel & Bochel, 1994; Bolt, 2005; Bury, 1996;

Chappell, 1992; Crawshaw, 1994; Gleeson, 1999; Imrie, 1997; Imrie & Kumar, 1998;

James & Thomas, 1996; Moore, Beazley, & Maelzer, 1998; Omansky, 2011; Priestley,

1998; Shakespeare, 1995; Shakespeare & Watson, 1997; Swain, Gillman, & French,

1998; Thomas, 1999; Tregaskis, 2004; Zarb, 1995).

Oliver’s (1996) groundbreaking work emphasized that it is society that has disabled those with impairments due to the limitations in the environment. He strongly argued that disability should be examined through a sociological lens and should focus on the societal maltreatment of disabled people, in particular disabling barriers, prejudice and stigma. The shift of focus from an individual model to a social model of disability was also intended to change professional practice; clinicians and professionals adopting client-centered practices should recognize the expertise of disabled people and should focus on disabled people’s priorities, which involve removing the physical and attitudinal barriers that limit their opportunities.

As the first full Professor in Disability Studies, Oliver’s influence was unmatched. His embrace of, and advocacy for, the “Fundamental Principles” written by UPIAS also greatly increased the popularity of that document. Oliver would almost always cite

UPIAS’s definition of disability as “The disadvantage or restriction of activity caused by a contemporary social organisation which takes no or little account of people who have physical impairments and thus excludes them from the mainstream of social activities”

(Oliver, 1989, 1996, 2009b; Oliver & Barnes, 2012).

Throughout his career, Oliver renounced the idea that disability was an individual personal tragedy and instead framed it as a form of oppression experienced by disabled 30

people. He also embraced the idea that disabled people would empower themselves in many ways, including challenging professional dominance in terminology (Oliver, 1989).

Oliver’s work critiqued processes that to classify and categorize disabled people, without their input, as a form of control over disabled people. When health professionals are considered the experts on disability, the lived experience and knowledge of disabled people can easily be discounted. Oliver and Sapey suggest workers within the field fail to develop their practices in accordance with disabled clients’ individualized choices because non-disabled professionals are deemed the experts in care: “To rely on practice to inform theory when practitioners may have already internalized an inappropriate model is to invite disaster,” (Oliver & Sapey, 2006 p.36). Adopting a social model of disability reinforces the concept that disabled people should be the central voices for decision making processes.

A visual representation of the type of barriers identified by scholars using the social model of disability has been labeled the “SEAwall of Institutional Discrimination”

(Swain, et al., 1998, p. 6).

1.1 Figure One: SEAwall of Institutional Discrimination

As this figure illustrates, the social model considers many different types of barriers – attitudinal, environmental, and structural.

While leading disability scholars have adopted the social model approach as a means to place stronger emphasis on societal barriers, many of them have integrated it into a wider theorization of oppression (Charlton, 1998; Gleeson, 1997; Northway, 1997). The dimensions of oppression identified by Young are: exploitation, marginalization, powerlessness, cultural imperialism, and violence (Young, 1990). However, some theorists believe that in order to argue the position that disabled people are oppressed, it is paramount to deconstruct preconceived notions of oppression. Abberley suggests in order to entirely analyze the oppression of disabled people fundamental differences between disabled people and other social groups must be considered. He asserts

biological differences or impairments are components to disability oppression – unlike other forms of social oppressions of race and sex:

In developing theories of sexual and racial oppression it has been necessary for theoreticians of the women’s and anti-racist movements to settle accounts with biology… For a theory of disability as oppression however an important difference arises when we consider the issue of impairment (Abberley, 1987, p. 164).

Abberley asserts that concepts of embodiment and impairment are essential for understanding the unique features of disability oppression and he suggests a social theory of impairment to highlight the social origins of impairments. For example, he explains how impairment is not always the result of hereditary, but is often an outcome of social factors such as the “socioeconomic context of its occurrence” (p. 166).

Disability studies scholars have applied the social model of disability in identifying barriers within many areas or life, including employment, education, transport, the built environment, the health system, the labor market and many other elements of social life

(Barnes, 1992). When the social model has been applied to education, its proponents have emphasized the need to identify and remove disabling barriers and to create an inclusive educational environment. Its main suggestion has been that school environments (both physical and attitudinal) need to be accessible to everyone, not just to benefit disabled students, but all students, because they send a message that “everyone belongs” (Burke,

2015, p. 5). This principle of inclusion has been advocated for the entire school environment – not just the classroom, but also playgrounds and other spaces (Burke,

2015). Likewise, the failure to fully include and value disabled students is also placed

within a wider context of social exclusion, disrespect and denial of rights. The need for thorough inclusion – again a theme of the social model – is summarized in the following quote:

The focus for inclusion, in principle at least, is the best process of changing mainstream schools to be accessible to young disabled people, in terms of curriculum and teaching, organization, management, the physical environment, ethos, and culture (Swain, et al., 2003, p. 115).

The social model has enabled disability advocates not only to highlight disabling barriers, but also to imagine a better future based on inclusion. Some of the characteristics of such a future have been identified by Mason:

 Access audits of both the school environment and the learning environment;

 Inclusion of disability issues and the positive portrayal of disabled people in the

curriculum;

 Accessible communication methods;

 Addressing both disablist language and the abuse or bullying of disabled students;

 Building an appreciation of difference throughout the school, and intentionally

fostering healthy and inclusive relationships;

 Inclusive school trips and other activities; and

 Consultation with, and involvement of, all parents (Mason, 1996).

Consistent with the social model, the emphasis of work in disability studies on education has been to emphasize that the school environment, rather than disabled children, need to adapt in order to make inclusion work. Unfortunately, schools have often misplaced their 34

attention, by trying to force disabled children to ‘fit in,’ rather than redesigning their own practices and policies. “A large proportion of children continue to be marginalised within and from education systems, or, at best, accepted on a conditional basis...conditional on the extent to which the child adapts to the school” (Miles, 1996, p. 74).

The summary of disabling barriers in this section of the thesis has emphasized the ways in which disabled students may not experience the same rights and opportunities as their nondisabled peers. In doing so, it has emphasized the utility of the social model as a tool for advocating for change as well as identifying disabling barriers. By focusing on disabling barriers, rather than the disabled person, the social model has been a forceful tool for advocating systemic change. But critics have suggested that a pattern of silence around impairment is not entirely useful (Shakespeare, 2013). Impairment and disability are connected – albeit in complex ways – and to ignore impairment is to create an incomplete picture of the lived experiences of disabled people. Critics of the social model stress that it is politically, practically and personally problematic to ignore the importance of impairment (Sally French, 1993; Sally French, 1993; Shakespeare & Watson, 2001).

This limitation is unfortunate, since a holistic discussion of “impairment effects”

(Thomas, 2007, p. 135) and “psycho-emotional disablism” (Reeve, 2004, 2008a, 2008b) is necessary to develop a careful and nuanced analysis of lived experiences of embodiment. The implication of this literature is that it is important to apply a holistic approach which examines both impairment (including physical/emotional/cognitive/sensory issues as well as the embodied effects of disablism) and disability (which exists in multiple environments including school). 35

The social model may lead to an overly negative focus on barriers which understates the agency of disabled people. Sherry emphasizes that disabled people are not simply the victims of disabling barriers; they exert remarkable agency and resilience in trying to improve their lives (Sherry, 2006). Such resistance ranges from everyday resistance to disabling interactions to advocacy for wider reform of policies and practices. Sherry suggests that it is essential to avoid the pitfalls of a structuralist approach which ignores such human agency. Disabled people are not simply the victims of disabling barriers; they and their allies resist such attitudes and behaviors, creating possibilities for a better life and a more inclusive future. In terms of the study of people with profound short stature in this thesis, Sherry’s work suggests a need to adopt a more sophisticated approach to power and resistance than the simplistic, structuralist approach of the social model.

In terms of applying this critique of strucutalism to the experiences of people with profound short stature, some of the literature has already highlighted their remarkable resilience. Over the life course, strategies for handling adversity and stigma evolve and become refined. For people with profound short stature, strategies for handling adversity and stigma are complex and fluid. Their stories of resilience demonstrate how many life facets such as family support, peer interactions, and stigma affects this process (Schanke

& Thorsen, 2014).

Another critique of the social model involves the need for a more thorough exploration of the complexities of identity. Sherry’s research participants adopted a range of identities along a continuum: refusing to identify as impaired or disabled; identifying as impaired but not disabled (or disabled but not impaired), and identifying as both impaired and disabled. He suggests that instead of assuming that people with various impairments automatically identify as disabled, it is important to recognize the diversity and polyvocality of identity experiences. Sherry’s suggestion that the social model has failed to take identity seriously deserves fuller attention, and therefore the identities of people with profound short stature will also be the subject of investigation in this thesis.

Another concern of embracing a collective disability identity is the question of authenticity – some people do not regard their impairments as severe enough to warrant the term “disabled,” and others who claim the term are critiqued for doing so for the same reasons. Additionally, there are so many impairments that the disability community is continually fractured among impairment lines. Some people with particular impairments

(for example, vision impairments or physical impairments) might regard their lives as completely different from people with other impairments (for instance, someone with mental illness or an intellectual disability). An informal “hierarchical pattern of inclusion and exclusion” (Berger, 2013) complicates any sense of shared experiences.

The social model tends to assume that people who experience stigma, discrimination and prejudice because they have an impairment will almost automatically adopt a “disabled” identity. This assumption is both simplistic and inaccurate. In terms of this thesis, 37

Sherry’s argument might suggest that whether someone identifies (or is identified) as a

“little person” or “disabled” is the result of the complex interaction of individual and social factors. But he also stresses that people may even refuse to acknowledge that they have certain medical conditions– there are many more options available, including resistance or aversion to any label that characterizes someone as ‘abnormal’ in any way.

Previous applied research by Watson also illustrates this dynamic (Watson, 2002). Using a grounded theory approach, Watson suggests that many people with impairments do not self-identity as disabled. Saltes also highlights the ways that particular people with impairments cultivate self-identity by discussing issues such as the complex relationship of the body, impairment, the construction of self-identity, and the experience of disabling barriers (Saltes, 2013). Her findings revealed the rich complexity in disabled peoples’ attitudes towards identity and impairment. For example, some participants desired for their impairment to be disassociated from their identities while others embraced their impairment and acknowledged it as an essential attribute to their overall identity.

The social model can therefore be criticized for failing to pay enough attention to the identities adopted by disabled people. The minority model of disability, which is popular among some disability scholars in the US, adopts a perspective strongly influenced by the civil rights movement. It suggests that disabled people share a collective identity as a minority whose rights and freedoms have been unfairly curtailed because of prejudice and discrimination. However, unlike the social model, this perspective does not simply focus on disabling barriers. It emphasizes the need for disabled people to adopt a 38

common identity, on the basis of shared experiences and a shared culture, to foster a sense of collectivity. This alternative approach is the focus of the next section of this thesis.

Minority Model of Disability

The minority model of disability originated in the US and was based on the assumption that people with disabilities are a minority group. Recognizing this minority’s civil rights was paramount for establishing social equality, according to this model. In developing the minority model, disability activists and scholars initially focused on demonstrating the experiences of discrimination against disabled people in order to prove their “minority status” before the courts.

The approach of using the courts to demonstrate widespread patterns of discrimination was explicitly modeled on the civil rights movement. These activists and scholars sought to demonstrate that like people of color, disabled people have been denied their fundamental human rights and therefore they too are best categorized as a minority

(Fleischer & Zames, 2011). One of the best summaries of the minority model has been provided by Linton:

Disability is best understood as a marker of identity…When disability is redefined as a social/political category, people with a variety of conditions are identified as people with disabilities or disabled people, a group bound by common social and political experience. These designations, as reclaimed by the community, are used to identify us as a constituency, to serve our needs for unity and identity, and to function as a basis for political activism (Linton, 1998, p. 12).

As this quote indicates, the minority model serves as the basis for a particular type of politics, revolving around community-building and political activism. While many disability scholars would be reluctant to use the term “conditions,” (as it seems overly medicalized) – they nevertheless would share this affirmation of disabled people as a minority.

Longmore elaborated on this shared political agenda underlying the minority model. He identified five major themes which have been adopted by the Independent Living

Movement and which are central to the minority model. They include: shifting the attention from the rehabilitation of medical conditions to the social and political underpinnings of disability; elimination of these sociopolitical barriers as opposed to trying to correct impairments; framing the social participation of people with disabilities as a fundamental human right rather than solely provided by charity; challenging the power of professionals and bureaucrats; and empowering people with disabilities at individual and collective levels (Longmore, 2003).

Longmore also suggested that attempts “to explore or to create a disability culture” follows on from the minority model (Longmore, 2003, p. 215). Indeed, the idea that there is a unique disability culture has been the focus of a great deal of scholarship within disability studies. According to Gill, disability culture is simply not collective testimonies of oppression, but rather a collage of the concerted experiences of disabled peoples.

Artistic expression, humor, language, and rituals are all elements that compose disability culture. Group narratives are indeed a complex combination of both positive and negative 40

encounters. This approach to culture reframes disability as tales of resilience and triumph.

Gill categorizes the main objectives of the disability culture as the following:

 Fortification – Expressing a distinctive disability culture demonstrates pride. It

relativizes disabled people and enhances their abilities to resist oppression.

 Unification – Adopting a collective identity reinforces support amongst group

members and common values.

 Communication – By interjecting artistic rituals, disability is identified as a

unique culture both within the disabled and nondisabled communities.

 Recruitment – Framing disability as a positive, distinctive experience encourages

disabled people to “come out” or identify as disabled while expressing pride.

Like Longmore, Gill’s minority model is keen to suggest that certain core values underpin the disability movement. She suggests that these values include: accepting differences amongst people; the framing of vulnerability and interdependence as common life circumstances; understanding and accepting the unpredictable outcomes of impairments; maintaining a cheerful and humorous spirit despite experiencing oppressive circumstances and impairment effects; acquiring the skills to manage multiple avenues of life including technology; the ability to craft complex plans while acknowledging multiple projected obstacles; the rich cultivation of interpersonal skills; and a flexible approach to initiating and handling tasks (Gill, 2009).

Interestingly, even though the minority model largely reflects identity politics, it is the underlying values of the disability movement (rather than the identities adopted by disabled people) which are often highlighted by those who support such a minority model. Like Longmore, Morris emphasizes certain values about disability:

• All of humanity is valuable;

• Anyone regardless of whatever impairment is able to exercise decision making;

• Disabled people possess the fundamental right to control their life; and

• All disabled people are entitled to fully participate in society.

The notion of a collective identity which affirmed the humanity and shared experiences of disabled people is clearly evident in this approach to disability.

Some contemporary disability activists take Gill’s argument about the minority model and disability culture even further, advocating for a distinct radical “crip” politics. Some disability studies scholars advocate for the adoption of the term “crip” (Goodley, 2014;

Kafer, 2013). The term “crip,” a loosely-associated derivative of the more pejorative

“cripple,” is a word once used as an insult which such activists are trying to reclaim. It is generally seen as offensive, cruel and harsh, but Kafer suggests that “…that harshness is a large part of its appeal (Kafer, 2013, p. 15).” Unfortunately, little applied investigation has explored whether PWD accept or identify with this “crip” identity.

While scholars such as Kafer assume that a minority model is widely adopted, and that people are willing to adopt a “crip” identity, there are a number of flaws in this assumption. Both a minority model (and even more so “crip” identities) are unlikely to be 42

widely adopted among disabled people because most people with impairments do not identify as being disabled (Garland Thomson, 1997). As well, people who acquire impairments later in life (as opposed to people who have been disabled since birth or as small children) commonly resist such a minority model of disability (Berger, 2013, p.

31). Given that large numbers of people refuse to identify as “disabled,” because of its negative connotations, it is almost inconceivable that they would prefer the term “crip.” It seems more valuable to explore in detail the multiple and complex identities which individuals with various impairments adopt. This research will also play a role in exploring such complexities.

The implication of this set of literature is that it is necessary to explore the identities associated with various impairments. In this case, parents were asked which identities they have helped to foster among their children, including their ideas about “little people,” “disability,” and other terms they might choose. That is certainly an area which will be explored later in the thesis. However, another aspect of the minority model – its critique of ideas of ‘normality’ and biopolitics – deserves more attention. The next section of this thesis, shaped by the work of the French philosopher Michel Foucault, addresses this issue in more detail. It deals with issues of normalization, medicalization, and biopolitics.

Normalization, Medicalization and Biopolitics

It is almost impossible to explore the topic of disability and impairment without referencing social norms. It is clearly necessary to explore the ways in which biopower operates on the body and the ways in which certain norms – in the present case, ‘normal height’ – are (almost) venerated ideals. In order to understand these dynamics, it is essential to theorize the relationships between bodies, power, norms, biopolitics, and medicalization. An appropriate first step involves exploring the work of Foucault

(Foucault, 1977, 1980a, 1980b, 2012). Foucault’s work predates the advent of disability studies, and yet the themes of his work continue to be discussed in discussions of disability, impairment, medicalization and biopower, decades after his death.

One of key contributions of Foucault was to highlight the immense power of normalization as a social, medical, educational, and legal process. Whether it was in medicine – as detailed in Discipline and Punish (Foucault, 1977) and The Birth of the

Clinic (Foucault, 2012), some of his lectures at the Collège de France on the “abnormal”

(Foucault, 2003), or his examination of norms, criminal justice, psychiatry and discourse in the parricide committed by Pierre Rivière (Foucault, 1975), Foucault was always interested in normalization as a social process – as well as the ways certain practices, knowledges or behaviors were labeled “abnormal.” Similar themes can be found in his studies of madness, where he emphasized the ways in which breaking established norms of cognition led to confinement (Foucault, 1988b). So often, the operation of power is concerned with normalization. When he was discussing the intersections between medicine, psychiatry, the judicial system, work, prisons, and education, he highlighted

the ways in which “…it was organized around the norm, in terms of what was normal or not, correct or not, in terms of what one must do or not do” (Foucault, 2000, p. 59).

The connections between social norms (and the ‘abnormal’) and disability should be self- evident. However, in order to underline this connection, other authors have highlighted these connections, both in Foucault’s work, and in the study of disability more broadly.

As the introduction to one edited collection on Foucault states:

This collection is a response to Foucault’s call to question what has been regarded as natural, inevitable, ethical, and liberating: hence, contributions to this collection draw on Foucault in order to scrutinize a range of widely endorsed practices and ideas surrounding disability, including rehabilitation, community care, impairment, normality and abnormality, inclusion, prevention, genetic counseling, accommodation, and special education (Tremain, 2009, p. 3).

Foucault highlighted the ways in which the power of norms was often unseen. Taking up this theme, Davis suggests that the power of nondisabled people (and the marginalization of disabled people) stems from “the hegemony of normalcy” (Davis, 1995, p. 44). This hegemony is a widely accepted, dominant and commonly unchallenged set of beliefs and practices which assumes the default experience of humanity is a nondisabled one. In language reminiscent of Foucault, Davis comments “Normalcy, rather than being a degree of existence, is more accurately a location of bio-power” (Davis, 1995, p. 128).

He also comments that “…our goal should be to help ‘normal’ people see the quotation marks around their assumed state” (Davis, 1995, p. xii)

Discourse is important for Foucault because it is a key dynamic in social institutions and social practices. Mills has summarized the meaning of discourse, in a Foucauldian sense:

A discourse is a regulated set of statements which combine with others in predictable ways. Discourse is regulated by a set of rules which lead to the distribution and circulation of certain utterances and statements (Mills, 2003, p. 54).

Discourse, as a way of thinking about a personal or social problem, is obviously important when one considers the links between the personal and political elements of disability. So many discourses and knowledges (educational, medical, juridical and so on) combine, contrast, intersect, overlap and contest the multiple meanings assigned to various minds and bodies – particularly those labeled ‘abnormal.’ The study of discourse, for Foucault, is essential in identifying these different knowledges and also the technologies of the self-used by people in negotiating social life.

This term – “technologies of the self” – was another key contribution from Foucault which was particularly evident in his three-volume History of Sexuality (Foucault, 1980a,

1988a, 1990)., as a way of thinking about a personal or social problem, is obviously important when one considers the links between the personal and political elements of disability. There is a constant incitement to take care of the self in particular ways, and in terms of this research, it is particularly evident in terms of discourses about impairment and disability influenced by medicine. As Foucault commented in The Care of the Self:

The precept according to which one must give attention to oneself was in any case an imperative that circulated among a number of different doctrines. It also took the form of an attitude, a mode of behavior; it became instilled in ways of living; it evolved into procedures, practices, and formulas that people reflected on, developed, perfected, and taught (Foucault, 1988a, pp. 44-45).

Whether people with profound short stature experience such an incitement towards the care of the self is therefore another topic which will be examined later in this thesis.

Foucault continually highlighted the importance of the body as a locus of power. Rather than seeing power as something to be held, seized, taken, or exercised over others,

Foucault argued that power is invested in bodies:

Power exercised on the body is conceived not as a property, but as a strategy, that its effects of domination are attributed not to ‘appropriation’, but to dispositions, manoeuvers, tactics, techniques, and functionings; that one should decipher in it a network of relations, constantly in tension, in activity, rather than a privilege that one might possess; that one should take as its model a perpetual battle rather than a contract regulating a transaction or the conquest of a territory. In short this power is exercised rather than possessed; it is not the ‘privilege’, acquired or preserved, of the dominant class, but the overall effect of its strategic positions – an effect that is manifested sometimes extended by the position of those who are dominated. Furthermore, this power is not exercised simply as an obligation or a prohibition on those who ‘do not have it’; it invests them, is transmitted by them and through them; it exerts pressure upon them, just as they themselves, in their struggle against it, resist the grip it has on them (Foucault, 1977, pp. 26-27).

This quote is incredibly important for the topic being studied in this thesis, for many reasons.

- It highlights the importance of the body within a broader analytics of power;

- Certain institutions (such as medicine) occupy positions of power with regard

to the ability to categorize, label or diagnose conditions (or impairments, in

this case) at both the individual and population level;

- However, one cannot assume that medical professionals have all the power in

any interaction with patients (or in this case, with families as well). Even

when patterns of medical dominance seem to be present, there is always room

for resistance. In the case of profound short stature, this might involve

families contesting the diagnoses, reframing their meaning, or challenging

their applicability to the children with such diagnoses;

- Such resistance may also occur at the collective level, given that biopower

also operates at the societal level, but it may occur in a nuanced as well as

clear-cut manner. The MAGIC Foundation and LPA are two examples of the

ways in which collectives respond to such power. They challenge certain

meanings of the impairment, negotiate others, and provide links to

supplementary sources of information/knowledge/power to families, and so

on.

- While medical diagnoses might distinguish individuals with particular

conditions that result in profound short stature because at the cellular or

genetic level they have different causes, the broader operation of biopower

throughout society can lead to some collective identities, actions or resistance

among people with these disparate diagnoses.

- The operation of power is complicated that one should expect to see it in

multiple relations (to give one example from this study, in the ways in which

families digest, momentarily accept or challenge, contest, feel ambivalent

about, partially accept, negotiate, and otherwise respond to their children’s

diagnosis);

- Power operates on many levels, so accepting a diagnosis may influence

identities in distinct, overlapping, or contradictory ways. (In this thesis, for

instance, in the ways some parents might accept the label ‘disabled’ when

negotiating for an IEP, but refuse it in certain social interactions (or attribute

ambivalent/alternative understandings) in other situations; and

- It would be completely inadequate simply to focus on reductionist

explanations (such as the Marxist obsession with class) when an intersectional

– and indeed constantly changing and situational – analysis of power is

necessary.

Foucault’s exploration of the connections between knowledge and power is incredibly relevant to discussions of the power of medicine and is also a useful entrée into discussions of medicalization. For Foucault, knowledge and power are intimately related.

In place of the common idea that knowledge generates power, Foucault offered the concept of a power/knowledge nexus: “It is not possible for power to be exercised without knowledge, it is impossible for knowledge not to engender power” (Foucault,

1980b, p. 52). Power plays a productive role:

Power produces knowledge (and not simply by encouraging it because it serves power or by applying it because it is useful); that power and knowledge directly imply one another; that there is no power relation without the correlative constitution of a field of knowledge, nor any knowledge that does not presuppose and constitute at the same time power relations (Smart, 2002, p. 76).

In The Birth of the Clinic, Foucault particularly highlighted the ways in which issues of health are intimately tied to norms, and individual health is conceived more broadly in terms of the health of the nation. This led to a focus on medical power and medical knowledge, particularly the power of the medical gaze. He frames this power in terms of a medical gaze which claims exclusive power over the diagnosis of pathology: “the gaze that sees is a gaze that dominates” (Foucault, 2012, p. 39). Furthermore, the power of 49

medicine is linked to the ways in which a society is organized – biopower operates more broadly in terms of the health of the nation as well as the individual. In a later book,

Foucault would term such a role in terms of “an anatomo-politics of the human body”

(Foucault, 1980a, p. 139).

The themes of Foucault’s work have been widely explored, such as in studies of the process of medicalization as an element of power and the social construction of bodily difference – or in Armstrong’s words, the relationship between “bodies of knowledge/knowledge of bodies” (Armstrong, 1998). It is important, however, to recognize some of the new technologies of power which have developed since Foucault’s death, and the new ways in which they operate on and through the body. In order to analyze such developments, it is useful to turn to the work of Nikolas Rose (Miller &

Rose, 2008; Rose, 2009).

In The Politics of Life Itself, Rose discusses the ways in which contemporary biopolitics has changed broader relationships between medicine, citizenship, bodies, surveillance, governmentality, and power (Rose, 2009). Rose has identified a number of new developments associated with contemporary biopolitics. These include changes in medical technologies and molecular biopolitics focused on life in the future (for the topic under examination in this thesis, they might include the administration of Human Growth

Hormone to foster future growth). When fundamental life processes and biology are susceptible to such manipulation and engineering, “life itself has become open to politics” (Rose, 2009, p. 15) because people are treated for conditions which they are 50

predicted to have, but don’t currently experience, or they are treated for conditions they simply are at risk of developing. New subjectivities are also developing as a result of these developments in biopolitics. (Again, these subjectivities are clearly relevant to this thesis, since many of the conditions which cause profound short stature are now attributed to genetic causes that were only recently uncovered). New ethical concerns, have also arisen in the process; Rose suggests such concerns should be labeled

“ethopolitics” since they are qualitatively different to those faced by previous generations and involve the “biomedical government of somatic selves” (Rose, 2009, p. 27).

Rose’s work is clearly related to the topic under investigation in this thesis. As biotechnology and genetic screening has been integrated into routine, preventive healthcare, the diagnoses associated with profound short stature (and patient subjectivities) have changed. New forms of surveillance and governmentality have also arisen. As the child’s growth is monitored over a period of time, the process of surveillance often identifies new conditions, and new medications are prescribed to normalize height. One is not simply diagnosed and then treated – an ongoing process of practitioner surveillance can lead to other (or alternate) genetic conditions being

“detected, protected, and created” (Timmermans & Buchbinder, 2012, p. 120). Studies of contemporary governmentality (a term strongly influenced by the work of Foucault, but arguably developed in more detail by other scholars) does not limit surveillance to the medical gaze. It is far more expansive – involving a multiplicity of power relations, operating in discourses of freedom, biopolitics, and the relationships between governments and the population (Dean, 2010). 51

As Rose has suggested, there are new ethical developments associated with contemporary biomedical developments. One of the ethical issues relevant to this study which immediately comes to mind is the way social responses to impairment are often framed by such negative constructions of disability that they see little value in disabled lives

(Landsman, 2009; Malacrida, 2015). Indeed, many people who are diagnosed with profound short stature in utero are aborted (Kerr & Shakespeare, 2002). Previous research suggests that Little People (who have a lifetime of experience with such embodiment) may actually be more likely to abort a child with a prenatal diagnosis of conditions leading to dwarfism. One survey reported that while only 7.9% of average-statured participants would consider abortion of a fetus with restricted growth, 25.8% of short- stature respondents would contemplate fetus termination (Adelson, 2005, p. 112).

Clearly, the bioethical issues associated with medical interventions for profound short stature demand more analysis.

Another ethical issue involves debates about human enhancement and disability. Previous research on profound short stature has not explored the “everyday ethics” (Brodwin,

2012) of administering Human Growth Hormone – a medication regime requiring daily treatment . As well, new medical interventions directed towards profound short stature are usually aimed at mothers during the in-utero period, or during early childhood. Given the focus of prenatal and postnatal counseling on women’s bodies – and connections between maternal blame and disability – analyses of this issue must include a gendered component. 52

Rose is not alone in identifying new developments in biopolitics and bioethics. Others also suggest there are a number of crucial components to contemporary biomedicalization, including: a critical focus on health, particularly the ways biotechnology ‘enhances’ the body and surveillance both individually and collectively; a fresh biopolitical economy where medicine, health, illness, and the life course cultivate rich knowledges of biotechnology, services, and various forms of capital; medical enhancement and treatments rely which heavily on science and technology; and transformations in biomedical knowledge because of shifts in production, management, distribution, and consumption. Essentially, they suggest these processes not only transform bodies, but reconstruct identity from individual, collective, and population levels (Clarke, Shim, Mamo, Fosket, & Fishman, 2010).

In applying these insights to the topic under consideration in this thesis, it is clearly necessary to explore topics such as medicalization, social responses to particular forms of embodiment, the use of biotechnology, and the ways in which medicine reinforce certain norms and operate as a disciplinary form of power. Discussions about bioethics are an important element of any critical study of biopolitics. Responding to the physical and emotional effects of profound short stature is not simply a medical issue; it is a bioethical one as well. Technological advancements provide easy access to genetic detection of many of the conditions causing profound short stature. New forms of biotechnology have opened up additional options for changing the body, but they also have their own ethical dimensions – particularly those associated with normalizing unusual forms of 53

embodiment. The dearth of applied literature on profound short stature raises underexplored ethical issues problems in the post-genomic era because many of the new medical interventions have only been developed in the last ten years, and the bioethical literature is lagging behind these medical developments.

Overall, the implication of this set of literature is that it is necessary to carefully explore the social construction of impairment, to acknowledge the ways in which disabled lives are devalued, and to critically examine the ethics which may lay beneath decisions to engage in “human enhancement.”

Conclusion

This analysis of theoretical literature from disability studies, expanded by including additional literature on normalization, medicalization and biopolitics, has suggested some broad areas which guided some of the observations during fieldwork such as the need to:

• Explore disability in terms of physical and attitudinal barriers;

• Integrate impairment experiences in the analysis;

• Analyze the ways in which people accept/challenge/navigate/negotiate their

disability identities ;

• Explore the power of normalization, medicalization, and biopolitics.

The following Chapter will describe the methodology used in this thesis in addressing these concerns as they apply to people with profound short stature. 54

Chapter 3

Methods

Introduction

This chapter will outline the methodology which was used in the thesis. It will explain the choice of qualitative methods that rely on grounded theory; describe the key research question and subsidiary questions; outline the sources of data and the demographics of those who participated in the online survey; discuss insider research and its effects on the design of the survey; and outline the process used in coding the data.

Qualitative Methods

This thesis relied on qualitative methods because the aim was to get a deeper understanding of the personal and social experiences of parents of children with profound short stature. The aim was to develop thick descriptions of the topic, by deeply engaging with the topic in a number of ways: face to face meetings, online communications, telephone conversations, fieldwork, autoethnographic reflections, and participant observation. Such “thick descriptions” and “dense narratives” have been praised in methods texts as “a sign that the study has uncovered a particularly rich problematic” 55

(Flyvbjerg, 2011, p. 311). Unlike quantitative researchers, notions of validity in qualitative research involve representing the people and events which have been encountered as accurately and as fully as possible (Warren & Karner, 2010).

The progress of such qualitative research project is iterative, as the researcher engages simultaneously with findings from the field, "making it difficult to produce proscriptive research designs with the step-by-step precision produced by quantitative researchers”

(Warren & Karner, 2010, p. 9).

Grounded Theory

This thesis relies on grounded theory as the basis of its methodology. A key element of grounded theory is being open to new ideas based on interactions in the field rather than forcing preconceived theories or assumptions on the data (Gibson & Hartman, 2014).

Data collection and analysis is done concurrently in grounded theory. This iterative process has been summarized in the following manner:

Fundamental to a grounded theory research design is the process of concurrent data generation or collection and analysis. To achieve this, the researcher generates or collects some data with an initially purposive sample. The data from these initial encounters is coded before more data is collected or generated and the process of analysis repeated (Birks & Mills, 2015, p. 11).

Consistent with this recommendation, purposive sampling was utilized in recruiting participants for this research. This method has been recommended when conducting research with particular sub-populations who are difficult to access and who may have distinct experiences from the general population (Marvasti, 2004).

Consistent with the methodology of grounded research, this research involved initial exploration of the field and a pilot interview prior to further engagement with the topic.

The pilot interview will be discussed later in this chapter.

The need to be reflexive and to explore the relationship between the researcher and the participants is also vital to grounded theory (Birks & Mills, 2015). This topic will be explored later in this chapter, under the heading “insider research.” Criteria for evaluating grounded theory include: credibility, originality, resonance and usefulness

(Charmaz, 2014). Essentially, this means that grounded theory must demonstrate a rich understanding of the topic, which makes sense of the complex original data that has been gathered. It is through the use of such grounded theory that this thesis seeks to answer the following key research question and subsidiary questions.

Key Research Question

What can parents of children with profound short stature teach us about their children’s experiences in the post-genomic era?

Subsidiary Questions

• How has the development of new diagnostic categories in the post-genomic era

affected the ways in which children with profound short stature are diagnosed?

• Are there any unique forms of objectification which these children experience?

• Do parents report any particular psychosocial effects of this experience?

• What terms do the parents of children with profound short stature consider

appropriate for their children, and what identities do they try to foster?

• What can parents teach us about the social construction of “little people”?

Sources of data

Given the length of the research (two years) and the extent of the researcher’s engagement with the population (online, in person, and through various organizations), multiple sources were involved in data collection. The engagement of the researcher in the field was multifaceted. These sources of information included:

– Insider research;

– Pilot interviews with an adult little person, a spouse, and parent;

– Engaging with gatekeepers;

– Facebook groups;

– Internship with the MAGIC Foundation;

– Online survey of members of the MAGIC Foundation;

– Discussions with adults who have profound short stature;

– Autoethnographic reflections on my own children’s experiences.

Insider research

One of the elements of my methodology involved “insider research.” I am the mother of twin boys with pituitary dwarfism, and am eligible for membership in both the LPA and the MAGIC Foundation as a regular member due to this parenting situation. This background also provided a unique opportunity to engage with other members of the organization from a position of trust – people are far more likely to engage more intimately with someone who shares similar experiences and standpoints to themselves

(Sherry, 2006). However, the researcher must be very careful not to project their own ideas and experiences onto research participants – there must be a constant process of reflexive examination which prevents such bias from misrepresenting the findings

(Richards & Morse, 2013).

Insider research can provide important information on how organizations operate which other methods are not as well-suited to provide (Brannick & Coghlan, 2007). However, I am cautious in terms of generalizing about the insider/outsider binary. Naples discussed the complications about the insider/outsider dynamics of researchers. She suggested that

“outsiderness and insidersness are ever-shifting and permeable social locations that are differentially experienced and expressed by community members” (Naples, 1996, p. 84).

Having recognized that the insider/outsider binary can be problematic, it is still necessary to state that participants in this research were interested in my experiences as well. There was a sense of reciprocity and trust which would not have been available to ‘outsiders.’

They wanted me to share my own experience – so it has been an additional source of data and insight in this research. While I was happy to discuss my own experiences in terms of 59

an insider within that community, I was well aware that I had multiple roles. I was a researcher as well as a member of the group. This meant that I had some different objectives to others in the group – and these had to be acknowledged and negotiated. This process of negotiation was both fascinating and challenging, as the following discussion will reveal.

One of the most interesting elements of this insider research methodology concerned the active involvement of the MAGIC Foundation in the survey design process. Because they trusted me, as an insider, the organization gave me extensive access to their members.

However, my insider status also meant that they demanded accountability and responsiveness to their concerns. The organization wanted active input into the questions their members were asked, hoping that the survey would result in information which was useful for its advocacy endeavors.

Such active engagement is not uncommon in disability research. Disability organizations can provide a great deal of assistance to researchers studying health-related topics, but they are unlikely to be satisfied with being used as a means-to-an-end for an academic’s career advancement (Moore, et al., 1998). They are far more likely to be interested in a partnership with researchers, where a balance is struck between their own organizational needs and the needs of the researcher (Barnes, 2003; Oliver, 1992).The survey which was developed in this research was strongly influenced by such dynamics. In particular, the agency vetoed questions about embodiment and body image. It not prepared to include

questions on embodiment, even though some of the literature suggested this might be an area which potentially could yield important results.

There is undoubtedly a valid reason why the organization wants to avoid discussing embodiment. Primarily, it revolves around an objection to blaming the social experiences of these children on their unique embodiment. In the same way as the social model aimed to divert discussions of disability from a personal tragedy to a social problem, the

MAGIC Foundation does not want to contribute to such a negative framing of their bodies. Instead, it wants to provide nonjudgmental information about a range of conditions which can cause profound short stature among children. When discussing the social experiences of these children, it does not want to imply in any way that their distinctive embodiment is somehow flawed or less valuable than other bodies. This concern is understandable – even if it is not entirely consistent with the new directions in disability studies which attempt to ‘bring the body back in’ to discussions of disability.

This veto process was a particularly difficult practical and ethical dynamic for the researcher to navigate. It occurred after the researcher had conducted her fieldwork – the internship was finished in the previous semester – and the organization had a great deal of power as a gatekeeper. Nevertheless, the support of the organization was so important, in terms of further demonstrating to its members that the researcher could be trusted, that the changes which they wanted were accepted.

Pilot interviews

I conducted three in-depth pilot interviews: one with a parent, one with an adult with profound short stature, and one with an adult spouse. These pilot interviews also served as an entrée to the field – an opportunity to explore the role of a naïve learner with an open mind and an accepting demeanor (Charmaz, 2014).Within grounded theory and ethnography, the purpose of such interviews is to help the interviewer to begin to make sense of the field. It has been suggested that in such in-depth interviews, “less structure is better from the perspective of following where the conversation takes you” (Birks &

Mills, 2015, p. 73). By engaging in these in-depth interviews, a richer insight into the person’s experiences and insights may emerge – an incredibly useful dynamic in the early stages of research, since it also generates new ideas for the researcher. The conversational nature of such interviews is designed to encourage research participants to tell their own story (Hennink, Hutter, & Bailey, 2011).

I decided to conduct three pilot interviews in part because of the difficulties associated with exploring the experiences of children. There are many complex ethical issues associated with the participation of children in research, not the least of which is the limited capacity to consent and the need to rely on parental assent. Given my own experiences as a parent, I decided to focus on the experiences of parents of children.

However, I wanted this research to adopt a rounded approach to the topic and disability studies suggests that disabled people should be included in every stage of the research –as the disability slogan says, “nothing about us without us” (Charlton, 1998). So I 62

interviewed an adult with profound short stature at the outset in order to ensure that I was aware of potential conflicts between parental perspectives and those of disabled people themselves.

I also interviewed the spouse of a little person who was active in the LPA. Again, I was seeking a range of perspectives, at the outset, because I was adopting the perspective of a naïve researcher and I wanted to develop a holistic understanding from multiple perspectives. This spouse was generous with her time. We spent one hour meeting in person, and another hour talking on the phone. Her comments were useful in terms of identifying the ways in which her spouse continued to be stared at, objectified, and called names. She also talked about the ways in which her own family had rejected her spouse, and had made negative comments about any future children they might have. Her insights reinforced my own awareness of the lifelong effects of psychological disablism, not just on the individuals who have profound short stature, but also on their family members.

This was an insight I could take into my future work with parents.

Engaging with gatekeepers

Gatekeepers have enormous power in any ethnographic fieldwork, since gaining access is so vital to the results and the credibility of the research. Gatekeepers are powerful resources for recruitment of research participants, if they are convinced of the merits of the research and the trustworthiness of the researcher. Meeting with gatekeepers prior to beginning fieldwork is both a form of respect and a protocol which can greatly assist the 63

recruitment process because they can potentially become an advocate for the research within the community (Hennink, et al., 2011).

I will now describe some of the challenges I experienced with gatekeepers in this research – not as an interesting anecdote, but because the process of gaining access is considered important data itself within ethnography (Marvasti, 2004). My first experience of gatekeepers occurred in the context of the LPA; my second involved the

MAGIC Foundation; and my third involved Facebook groups for the population I was researching. These Facebook groups had various inclusion criteria – some used the term

Little People, some used dwarfism, and some referred to specific diagnoses that cause profound short stature.

Gatekeepers in the LPA

While the LPA identifies as an organization that serves people of short stature, height is not the exclusive requirement for gaining group membership. Who qualifies as a “little person” – according to the LPA – is not simply based on physical stature, but rather a combination of height parameters and notions derived from medicalization. On LPA’s official website they characterize qualifying members as those who have received an official medical diagnosis (emphasis added) that causes profound short stature.

“Membership is available to individuals with a medical diagnosis of dwarfism or form of short stature, as well as their families, grandparents, relatives, and all medical professionals.” Ironically, for a group which aims to challenge the negative social

constructions associated with dwarfism as a medical condition, medicalization is a key component of group membership.

The LPA is a hierarchically-structured organization, meaning that those in the National

Headquarters receive initial phone calls and inquiries. Local groups, known as

“Chapters,” exist throughout the country. However, the National Headquarters does not pass out local phone numbers for local chapters, it simply provides email addresses. The

National Headquarters also demands that prospective members provide them with medical documentation relating to their height and medical conditions. This gatekeeping role gives them a great deal of power, in terms of access for both members and researchers. I asked the National Office to provide telephone numbers for my district representatives, but was denied.

I personally experienced ostracism and exclusion from the National Headquarters because of my lack of a medical diagnosis – despite that my stature is within LPA’s height parameters for “little people.” I could qualify as a member based on my own height (if not for the demand that I provide medical documentation as to its causation) but also because my sons are both diagnosed and have the appropriate height for membership. However, in order to be accepted as a member, an organizational leader at the National Headquarters insisted I provide medical documentation to verify not only my sons’ medical condition that caused their profound short stature, but also my own diagnosis. I explained to the organization leader that there was no official diagnosis to explain the cause of my short stature. 65

Interestingly, even though my sons’ embodiment would qualify me for full membership, the woman from the National Office became more focused on my own situation. She insisted I provide proof of my medical condition in order to become a group member. At the time I was uninsured and it would be immensely expensive to seek care from medical specialists to determine the cause of my short stature. This experience highlights the problems associated with relying on documentation of medical conditions to validate embodied experiences and reflects privileged assumptions of access to medical care and resources. After I submitted medical validations of my sons’ diagnoses to LPA National

Headquarters, my children were approved as members. Likewise, I was accepted as a member. But it was unclear if I was registered as a member due to my own short stature or because I was the parent of “little people.”

The National Headquarters also acts as a gatekeeper by providing very limited information about local chapters. They did not (and would not) provide any information to me about contacting local chapters except for one email address. Contacting the

Chapter President for my designated district was problematic. I sent several emails to the current Chapter President within my district requesting information about local LPA events in my area. However, I did not receive any replies, nor did I receive any emails informing me about local events. Eventually, after engaging individually with other little people, I was directed to a Chapter President in the Chicago district where I was accepted as a member in their Facebook group. However, the Chicago district is not my district,

and while they assured me that the local district is quite active, their failure to respond made it impossible for me or my family to become involved.

Both my graduate supervisor and I spoke to the National Office of the LPA offering to engage in an unpaid internship with the organization. The office was ambivalent about this offer – they suggested I read all the material on their website and then attend a conference in another state. Again, there seemed to be assumptions about economic privilege behind this suggestion – the expectation that I would be able to afford such a trip seemed classist. When I asked about the possibility of fee waivers or any form of financial assistance for the conference, she suggested that it was impossible, but that I could apply for such assistance the following year. Again, the power of the LPA National

Headquarters as a gatekeeper was evident. It seemed that the process of engaging with the LPA National Headquarters was paved with roadblocks.

Given that my children have genetic dwarfism it is likely I carry a gene for this condition, so it seemed like the LPA has thoroughly accepted and even extended the power of medicalization, not just in terms of the power of doctors to diagnose, but also the need for documentation before one can effectively engage on any level with others who may have similar embodiment. To request proof of my medical diagnosis felt like the LPA was discrediting my lived knowledge of embodiment and placing authority to doctors.

Facebook groups

Accessing little people and profound short stature populations proved to be a difficult task for a number of reasons. As discussed earlier in this research, this population tends to be hard to access because the issue of identifying as a person of profound short stature and/or as a little person is complicated by the complex nature of diagnosing. The prevalence of people with dwarfism within the Ohio and surrounding area was also difficult to determine because epidemiological data was unavailable. Therefore, I also attempted to connect with this particular community via social media. During the course of this study, I established contact with members of little people and profound short stature Facebook groups. Each group was diverse and was customized to meet the needs for a specific restricted growth diagnosis. For example, I joined the various groups of

Little People, Growth Hormone Deficiency, and Osteogenesis Imperfecta. Additionally, I joined two groups that included members with broader types of profound short stature – these groups’ central focus was not necessary to offer a platform to discuss impairment effects of their particular diagnosis, but to advocate for their human rights and social justice for little people.

While these social media outlets offered the hope of easier access to little people, initiating contact with these groups was still challenging. Each group I requested to join would send me a Facebook message questioning my physical stature, my diagnosis, and my motives for wanting to become a member. Some groups were more inclusive than others. Surprisingly, the Osteogenesis Imperfecta group welcomed me to their page when

I explained I was a researcher who had twins with Pituitary Dwarfism. Group pages such as various district branches of the LPA were more reluctant to allow me as a member 68

when I explained to them my sons had Pituitary Dwarfism, as opposed to

Achondroplasia.

Even when I contacted people with profound short stature who were friends of friends, and had a national profile with the LPA, they were very guarded in talking to me. Perhaps this reflects the levels of abuse that this population experiences. The stories from the research participants in this study might suggest that they might be unwilling to trust someone who they did not know. As the literature review demonstrated, psychoemotional disablism leaves many scars. But surprisingly, even people who were well known in the disability movement and involved in disability pride and disability culture events were reticent to talk to me. This point underlines just how difficult it is to engage effectively with this population, and is an important reminder of the need to establish trust with research populations. Fortunately, I was far more successful in establishing such trust with other populations of people who had profound short stature, outside the LPA.

On another Facebook group for adults with little people, the man who was the group

Administrator (or in terms of research methodology, the gatekeeper) questioned me about my diagnosis and if I was a little person. I explained to him that arguably my height qualifies me as a little person, however, I was never diagnosed with a specific condition to validate my small size. After this (typical) conversation where we debated my eligibility to be considered a little person, the man stated “I cannot let you into the group, cause you’re really not a little person, but you are cute so I will add you as a Facebook friend.” Again, multiple forms of power need to be recognized: my economic status 69

made it impossible (and my age made it rather pointless) to go through the diagnostic process, and their responses to my gendered embodiment led to marginalization, objectification, and exclusion.

Another instance where I was subject to sexual advances involved a man who claimed to be from Africa. He sent multiple photos of himself in various athletic clothes. The experience of being approached (and scammed) by people from Africa is commonplace on the web, and I wondered if the person who was emailing me was actually the person represented in the families. Nevertheless, the man sent photos revealing and emphasizing his muscularity before I blocked him.

Internship

The data presented in this article stems from the researcher’s two-year engagement with the MAGIC Foundation. Throughout that period, multiple methods were used to collect data, including individual interviews, fieldwork conducted during an internship with the organization, and an online survey. Participant observation was obviously a key element of the fieldwork.

Online survey

One of the sources of data was an anonymous online survey conducted via Survey

Monkey, which yielded approximately 25, 000 words from 50 respondents. Prior to 70

distribution, the survey was given ethical approval by the Institutional Review Board of the University of Toledo. A link to the survey was distributed via the Facebook page of the MAGIC Foundation. The 50 responses were coded by the researcher and the results of the survey were shared with the organization.

In Chapter One, it was suggested that certain sub-populations of people with profound short stature may have been ignored or understudied as a result of the chondrocentric focus of previous work. This research fills that gap in the literature. The diversity of conditions which parents in this sample reported included Growth Hormone Deficiency,

Hypopituitarism, Turner syndrome, Russell-Silver syndrome,

Pseudohypoparathyroidism 1a, Panhypopituitarism, Osteogenesis Imperfecta, Jeune syndrome, Primary Microcephaly, Pituitary Dwarfism, Pseudo Tumor Cerebri, Primary

Insulin-like Growth Factor Deficiency, and generic terms like Intrauterine Growth

Restriction, Small for Gestational Age, Idiopathic Short Stature, and Failure to Thrive.

Some of these diagnoses, such as Pseudohypoparathyroidism 1a and Primary Insulin-like

Growth Factor Deficiency, have only been developed in the post-genomic era. Similarly, some tests for genetic conditions and treatments arose after the discovery of the human genome. Other conditions, such as Jeune syndrome, have been known to exist for decades, but their exact genetic location and molecular basis has only been recognized in the post-genomic era.

Data coding

Data was coded into major themes and subsidiary themes. These themes were identified through discourse analysis and through the coding program NVivo. An example is the category “Diagnoses,” which was broken into ten subsidiary themes.

1. Difficulties in receiving accurate diagnoses

2. Labels

3. Causes

4. Medical barriers

5. Impairment effects

6. Additional health conditions

7. Assumptions

8. Language

9. Maternal blame

10. Medicalization and bioethics

Another category was “Infantilization” which was broken into four subsidiary categories.

1. By peers

2. By strangers

3. And exclusion

4. Less self-determination

Conclusion

This chapter has described the methodology adopted in this thesis. It has justified the use of qualitative methods which utilize grounded theory. The key research question and subsidiary questions have also been outlined. In order to answer these questions, the thesis has utilized multiple sources of data. The chapter has also discussed the demographic background of those who participated in the online survey. As well as the survey, the thesis relies on insider research, and the importance of this insider relationship with research participants has also been explained. Finally, the process used in coding the data has been outlined and some examples of the codes developed in the research have been provided. The next chapter will discuss the results of this research.

Chapter 4

Results and Analysis

This Chapter describes and analyses the results of the research, engaging with both the theoretical literature outlined in Chapter Two and utilizing the research methods described in Chapter Three. The results are informed by the theoretical literature, but not entirely guided by it because of the use of grounded theory. Some of the results of the research do parallel the themes in the literature (such as the experience of disabling barriers) but others do not. Such data illustrates the value of a grounded theory approach

– theory may inform the ways in which a researcher approaches a topic, but it should never determine it. A pre-determined theoretical approach is overly deterministic and reductionist; its simplicity is almost offensive to the rich diversity of people’s experiences.

The first section of this chapter will outline some of the results in terms of key themes identified in the literature review in Chapter Two. The main areas highlighted in the social and minority models of disability were disability, impairment, individual and collective identities, the values associated with disability culture, and ‘crip’ politics. In terms of other literature (particularly that influenced by Foucault) the following themes were also identified: normalization, medicalization and biopolitics. Within these themes, 74

some of the topics which were raised include the importance of discourse, technologies of the self, the body, the power/knowledge nexus, power and resistance, and medicalization.

Disability

The social model of disability is particularly useful in terms of identifying and exploring the barriers in education which were identified by parents. While some parents did not report any problems with their child’s school, many reported stigma, bullying, and a lack of accommodations. One parent commented:

We had to hire a lawyer to get an appropriate IEP for our daughter. The personnel in the school are caring and accommodating, but the director of special services (the man in charge) has done everything in his power to inhibit helping our daughter. Luckily the law is on our side, but it is shameful that it has come to that. Another indicated a concern about both accommodations and safety:

Her school from Pre-K to 1st was very accommodating, but was a private school and we weren't sure she'd be able to attend enough for 2nd grade. The public school was very discouraging and I didn't feel she could be kept safe, so I have homeschooled her for 4+ years.

The social model of disability tends to assume that disabling barriers are experienced fairly consistently by disabled people. But this was not the case for the participants in this study. For instance, those parents who had a degree of economic privilege indicated that their children had benefited from being at more inclusive schools. One university- educated respondent reported an income of “between $50,000 and $100,000 per year” and commented that “We live in the northwest suburbs of Chicago though and our area is known for its excellent schools.” Another university-educated mother was able to search for the most accommodating school:

We are now looking at Catholic private school, and they seem willing to accommodate. They are also inviting her to do an extended shadow period to make sure it's a good fit for student and school.

For one poorer mixed-race parent, who disclosed an income of “under $30,000” and who was reliant on Medicare and Medicaid, the issues were not individualized (finding the most inclusive school for her child) but rather, systemic (finding inclusive environments for all children). For her, the issue was not her own child’s needs, but a broader need for inclusive, informed and diverse education. “I think the schools need to be diversed (sic) and understand more about people with different disabilities.”

In the discussion of the social model of disability in Chapter Two, the importance of schools as a source of inclusion and exclusion was emphasized. Both in-class and play experiences could influence the lives of disabled children. This was a theme that resonated with some of the participants in this research. For instance, when schools order clothing for their students, they can fail to accommodate the needs of children with profound short stature. “She is in the school play and they ordered t-shirts for all the kids, but hers was way too big. She tried it on and was very frustrated, and took it off and threw it across the room. It just reminded her how much smaller she is than the other kids.”

Exclusion from activities such as sports was also common. One parent highlighted

“Incorrect assumption as to their abilities, being left out of school extra-curricular activities” and another said:

He has to prove himself athletically. People assume he isn't a good player. Coaches don't always give him a look (though he's made every team he ever tried out for - basketball, volleyball, baseball, lacrosse).

Such exclusion was not only enacted by adults, but also by other children. A third parent stated that “Other kids… sometime won't include him and he's afraid that they might hurt him.” Staring was also an issue raised by one parent: “Noticed kiddos kinda step back from him and stare and watch him (sic).”

Being marked as ‘different’ – as imagined though the lens of hegemonic normalcy – meant that children were often excluded from various activities. Consistent with the theme of “psychoemotional disablism” discussed in Chapter Two, such exclusion has significant emotional and psychological effects. Over 60% described feelings of depression linked to bullying and experiences of stigma. Clearly, the impact of psychoemotional disablism is profound. Parents stressed that this depression was specifically linked to bullying rather than the experience of profound short stature. One father commented that his child “vastly” (sic) experienced depression “due to bullying, discrimination, stereotyping and loneliness as a-pose (sic – opposed) to any of the physical restrictions such as reaching high shelves.” He added that “extreme social barriers” meant that the child was “unable to be accepted by a lot of people” and experienced “frequent bullying both in school and in public.” Another parent commented that “I always have a heavy heart for her because she has been picked on and bullied at school for the last couple years due to her size and it seems to only be getting worse the higher in grades she goes...she is hoping to have good growth this summer before she goes off to middle school.” 77

Experiences of bullying had a profound effect on their victims, as evidenced by the following comment:

She definitely has times when she feels sad and frustrated about her size, for example when she is teased at school. One boy told her he didn't want to be partnered with her in P.E. because he didn't want to play with a "2 year old." She is 9.

Another parent added:

Usually we are fine. My son has dealt with done bullying over the years, but aside from that we talk about being you and that everyone comes in different shapes and sizes and that is ok.

Psychoemotional disablism is obviously an area of prime concern to these parents; some practical implications and suggestions to address this issue will be discussed in the

Conclusion to the thesis.

Impairment effects

There are a multitude of health issues that people with profound short stature may experience. While 11 of the respondents indicated that their children had not experienced additional health conditions, 39 respondents described a multitude of physical and emotional problems. Eight parents indicated that their child had Attention Deficit

Hyperactivity Disorder (ADHD), seven reported problems with breathing or restricted airways, five said that their child had speech problems, and another five stated that their child experienced sleep apnea. Individual responses identified many other severe

impairments that have profound and lifelong effects, such as hydrocephalus and other brain disorders, heart and vascular problems, feeding issues, spinal cord complications, and issues related to hormone problems in puberty.

Many of the children had complex medical histories. For instance, one mother of a daughter with an initial diagnosis of Small for Gestational Age and Russell-Silver syndrome described “over 20 hospitalizations, many daily medications and needing to eat every 60-90 minutes all the time.” Psychosocial problems were also identified. One parent suggested that her daughter had a range of impairment effects associated with

…the wider conditions of having TS (Turner syndrome), not just the short stature… Not the restricted growth per se, but all of the mosaic issues that surround TS. She sees a psychotherapist and attends a girl's social skills group both privately and as a part of her IEP at school to help her manage some of the feelings that come up around this. As someone with TS, she will never reach puberty on her own, and she knows this. While I haven't explained how estrogen works, we have said that the doctor will help her "get" her puberty when the time is right. :)

“Getting” puberty is an interesting intersection between disability and gender – one which is beyond the scope of this thesis, but it certainly deserves further attention. It has not been discussed in the literature on profound short stature, perhaps because of the small numbers of people who have Turner Syndrome and are involved in organizations for Little People, where most research is conducted.

The results of this research did not easily fit into the categories identified in the literature review in Chapter Two. For instance, it might be possible to analyze attitudes towards health in terms of medicalization and social norms, but these results could also be used in 79

a more expansive discussion of the ways in which impairment effects are often compartmentalized in a more holistic discussion of the health of the child. The following comments could equally apply to both themes – but in grounded theory, the key is not to match the research results to predetermined themes, but instead to let the rich complexity of lived experiences drive the analysis.

Consistent with hegemonic normalcy (and perhaps the desire to avoid negative stereotypes associated with disability), a number of parents characterized their children as

“healthy” and “functioning” - but they acknowledged that their children experienced additional bodily limitations compared to peers and notions of normalized bodies. For example, a mother who reported an annual income at the poverty level stated that “My daughter seems healthy and her body seems to function properly, maybe a little slower to hit milestones and such as compared to other children her age but that is due to lack of muscle development.” An additional mother who reported an annual income also at the poverty level described her daughter’s body as “Very healthy. She is just breakable and small.” One mother with reported annual income over $100,000 said, “Fairly healthy, not functioning properly in some respects.” A fourth parent added “I think that my girls are healthy, but that their bodies don't quite work properly.”

While the above group of respondents emphasized functionality and healthiness as characteristics for describing their children’s bodies, some focused primarily on attaining an normalized height such as in the following comment “We hope he will make it to

about 5''7".” One of the more touching comments came from a mother whose daughter received a “broad, confusing” diagnosis of Intrauterine Growth Restriction (IUGR):

I pray that her body is healthy and doesn't fail her. I pray that she's just small and that's it. I pray that some underlying cause/ condition is never revealed. I pray that that someday there will come a day that I'm not constantly worried about every bite of food she consumes to encourage extra growth.

A number of children in this research experienced a broad range of health conditions in addition to their restricted growth diagnosis such as “feeding issues,” “speech delay,” asthma, and ADHD. For instance, one mother indicated “The first year of her life she had terrible reflux.” Another parent whose child was diagnosed with Russell-Silver

Syndrome reported her daughter received a recent diagnosis of Hypothyroidism. A third parent described the following health issues her daughter experienced

She has GI issues (IBS). We just completed blood work to find out if she has celiac disease and/or lactose intolerance. We also just had her TSH checked for hypothyroidism. We do not have those results yet. The IBS definitely affects her negatively, but it is manageable.

Interestingly, one mother who did not identify her daughter as disabled said that her child experienced many additional health conditions in addition to Growth Hormone

Deficiency. These conditions included “Pseudo tumor cerebri, asthma, and (a) compromised immune system.”

However, a mother who described her daughter as “physically challenged” while stressing that her child was not “mentally disabled” reported no further health conditions for her daughter “other than OI.” There is an implicit disability hierarchy in this statement – those with physical impairments are often keen to distance themselves from

(presumably more stigmatized) intellectual, cognitive or mental impairments (Sherry,

2006). For example, another mother stated:

Umm, yes, she obviously has had negative feelings over the years. Over 20 hospitalizations, many daily medications and needing to eat every 60-90 minutes all the time.... she has felt life is unfair at times. But going to the MAGIC convention for 20 years, she also says that she knows it could be a lot worse. "It isn't cancer, Mom" is the comment I have heard.

The ways in which people with such experiences understand their identities obviously deserves more attention.

Diagnoses

The diagnoses given to the children being discussed in this thesis could have, potentially, been discussed in the wider context of medicalization. But the data was so rich, and so detailed, it deserved to be a separate theme. This identification of diagnoses as a key theme of the research emerged naturally in the process of grounded research.

Although this research began with the assumption that “dwarfism” and “Little People” are both socially constructed concepts, it was not until the fieldwork began that the diversity of conditions associated with profound short stature was truly evident.

Interviews with parents suggested that some of the medical conditions which result in profound short stature have only been identified in the age of genomics, and advocacy regarding such conditions is often conducted outside the LPA. For instance, the entire diagnostic category “Human Growth Hormone Deficiency” is an example of a post-

genomic form of diagnosis (and arguably medicalization), and national advocacy is conducted by another organization, the MAGIC Foundation.

Interviews with the MAGIC Foundation – and literature which it distributes to parents – indicated that over 200 conditions can lead a person to experience profound short stature.

Unlike the social science literature which was reviewed above, those involved in the

MAGIC Foundation stress that it is inaccurate to lump this wide range of conditions under the generic term “dwarfism.” Many of these conditions do not actually involve

“dwarfism,” in terms of a strict medical diagnosis.

Feedback from parents made it clear that identifying the cause of profound short stature has been complicated by the development of new diagnostic categories in the post- genomic era. It also explored the social construction of various identity categories associated with this form of embodiment. Importantly, there had been no previous suggestions in the literature that a “sociology of diagnosis” (McGann & Hutson, 2011) was particularly relevant to this population. But through the process of grounded theory, this theme emerged as an essential element of the journeys of research participants in this study. Participants in this study provided twenty different diagnoses that had been used to explain the profound short stature experienced by their children. Importantly, only 1/7th of the total number of research participants actually listed “Achondroplasia” as their child’s diagnosis. This is particularly important because the literature review indicated that previous studies had almost-exclusively focused on this population.

The most common of these diagnoses were: Growth Hormone Deficiency (11 respondents), Achondroplasia (7), Russell-Silver syndrome (7), Idiopathic Short Stature

(6), Pituitary Dwarfism (5), and Failure to Thrive (5). Other diagnoses were: Turner syndrome, Hypothyroidism, Panhypopituitarism, Small for Gestational Age, Primary

Microcephaly, Intrauterine Growth Restriction, Ogenesis Imperfecta, Ogenesis

Imperfecta Type 3, Jeune syndrome, and Spondyloepiphyseal Dysplasia Congenital.

Another participant said her daughter had “Pseudohypoparathyroidism” but qualified her comments by saying “It hardly encompasses her, but is a genetic diagnosis, so I feel confident that it helps us treat symptoms that might have killed her otherwise.”

Interestingly, one research participant said that “no diagnosis” had been provided to explain the child’s profound short stature. This is an important reminder that diagnoses are often uncertain, and that medical science does not offer complete explanations. For some people, a lack of diagnosis may possibly explain the appeal of generic terms such as

“Little People,” Failure to Thrive, or Idiopathic Short Stature.

This is an important reminder of the value of considering the process of medicalization within the theoretical framework of normalization, medicalization and biopolitics. It is difficult to define profound short stature because the term is not neatly conceptualized; diagnoses are sometimes uncertain or ambiguous. Examples of ambiguous diagnoses include Idiopathic Short Stature (ISS) and Failure to Thrive. Moreover, there is much controversy surrounding the diagnosis and treatment of ISS (Conrad, 2007). However, this shortcoming is itself an important piece of information – it demonstrates how the medicalization of short stature is problematic. For example, IGFD was discovered over 84

recent years through genetic analysis. The detection of the condition is described as a tedious process where other underlying conditions must be dismissed.

While popular social conceptions of “dwarfism” suggest that a diagnosis would be relatively simple, 27% of parents reported difficulties in receiving an accurate diagnosis.

Misdiagnosis or failure to diagnose was a serious concern raised by parents. One child who was finally diagnosed with Russell-Silver syndrome was initially “misdiagnosed

(with a brain disorder) in neonatal ICU. No doctor was interested in seeing beyond that diagnosis.” A mother of a son with a Growth Hormone Deficiency diagnosis also said:

Yes, we went through two endos (endocrinologists) and several years of testing to get a diagnosis. MY son was producing growth hormone, but not enough. However, it was very difficult to get that straight answer from our first endo.

Another mother of a son diagnosed with Small for Gestation Age commented that “It took 6 years for a confirmation because most people had only heard of his condition years ago in medical school.”

One parent reported “There is no diagnosis. No explanation” for her daughter’s restricted growth. But she also described a degree of relief when her daughter initiated medical therapy despite the absence of an official diagnosis. She described her own feelings as

“Depressed/anxiety when having feeding issues and was told she was developmentally delayed around 2 months old. Once I could speak to more professionals and get OT PT services I felt better.” Another parent emphasized that medical intervention facilitated the regulation of her son’s height “No. His restricted growth is largely under control now.

People used to make comments on it, but I'm not sure how much he remembers because he was so young.”

Having discussed disability, impairment, and diagnoses, it might be useful to now address another theme from the literature review in Chapter Two: disability identities.

Disability Identities

The review of the minority model in Chapter Two described the ways in which people with disabilities were assumed to be a collective entity with shared values, experiences, and identities. However, the results of this research suggest a far different picture. Instead of commonality, it found diversity, underpinned by an emphasis on individualism. The vast majority of participants in this research refused to accept a “disability” identity for their children.

One of the critiques of the social model and the minority models is that they deal very poorly with the complex issues associated with a “disability” identity. This criticism is absolutely legitimate when one considers the identities of people with profound short stature. Of the 50 participants of the open-ended questionnaire, only six identified their children as “disabled.” When asking parents their feelings on the term “person with a disability” many viewed the label as the appropriate means to navigate social settings such as negotiating access to resources, organizational services, and academic accommodations. 86

Interestingly, while disability identities were usually refused, they were used in certain situations where they were useful in challenging disabling barriers. This is an important reminder of the fluid nature of identity – whereas the social and minority models assume a constant disability identity, this research found a far more dynamic process of negotiation, rejection, and occasional acceptance. One parent said that the term

“disability” would be used in relation to their son “Only on official administrative papers which give access to early intervention facilities.” Another said that the term disability is

“not totally” applicable, “but sometimes it is helpful.” However, some parents emphasized the use of people-first language as primary for describing their children. For example, a mother with a Post Graduate degree stated “I like the term and its emphasis on

"person." I prefer it to "disabled person."

Another parent stressed the need to identify a person as “disabled” in order to access the disability system, but also acknowledged that for her, the use of the term disability

…depends on how it's being used. If it means people are more accommodating or might fund assistive devices or create flexible structures many people can access, i can live with it. it's so closely attached to funding and attention in this country that it's hard to tease it away from its material benefits AND constraints.

The parent of a child with Turner syndrome provided one of the most detailed answers to this question:

Yes, she has disabilities and we use that term, although not constantly. She has a number of symptoms that result from TS1 that require her to have an IEP2 in school. These include dyspraxia, ADHD, visual-spatial deficits, anxiety, and aspects of NVLD3 (pragmatic language delays). Under the state and federal law she is required to receive an IEP with a diagnosis of "OHI" - Otherwise Health Impaired, which covers a number of disabilities, including her TS. It is a disability, because it's not a delay (it will never go away, but the symptoms/aspects of it can be ameliorated with therapies). She receives a number of therapies including OT4, social skills, psychotherapy, etc. We often use the word "challenges" rather than "deficits," although these are definitely deficits. A child needs to believe she can improve. TS puts her at significant risk for depression, increased anxiety, etc. We want to do what we can to prevent that. That being said, I absolutely see no reason to not talk about disabilities. There is no shame in that word.

Even though she has a clear understanding of the term “disability” in terms of gaining accommodations, therapies and other assistance, this parent’s comment that “we use that term, although not constantly” is also reflective of the ambivalent nature of a disability identity. In this comment and in other answers, the parent seemed to be aware that the term “disability” can be both a source of legal rights and entitlements, as well as a label that can be used in ways that harms someone.

Given the power of hegemonic normalcy, which was also outlined in Chapter Two, most parents considered their children “non-disabled.” The following comments from mothers illustrate this belief: “We do not think he has a disability. He's healthy and able to do everything” and “There's absolutely nothing wrong with her. She's just small.” Another mother of a child with Pituitary Dwarfism commented “She's not disabled at all, she can

1 Turner syndrome 2 Individualized Education Plan 3 Non Verbal Learning Disability 4 Occupational Therapy 88

do everything the other kids her age can do except maybe reach a plate in the upper cabinet at which point she will get a stool or climbs on the counter.”

The parent of a child with OI type 3 said that her daughter was “physically challenged” but “she has no issues with her mental function. She has issues with her body breaking & being smaller.” In terms of identity, she stated “Medically, I use dwarfism. Personally, I use petite or short stature.” This comment is interesting, not just because disability is contested, but also because it demonstrates the fluidity of identities associated with embodiment in different contexts. Others adopted some of the insights from the disability movement, and the social model of disability, to emphasize the role of the environment in creating disabling barriers, as the following comment illustrates: “My girls can do everything average height children can do, they just need to adapt their environment to meet their needs.”

The idea that these children can do the same things as others in their age cohort raises the issue of normalization, medicalization, and biopolitics. This is the next component of the research results to be discussed.

Normalization, Medicalization and Biopolitics

The power of normalization, medicalization and biopolitics was evident throughout the research. Even the ways in which parents discussed their child’s height was thoroughly medicalized, as the following comment illustrates:

My daughter would have like to be taller - she mid parental target height was only 5'1.5" and due to accelerated bone age (33 months in just 12 calendar months) she lost 2 years of growth - done growing at 4'10"

This parent freely uses medical terminology – “mid parental target height” and

“accelerated bone age” – in discussing her daughter’s height. Scientific/medical discourses are attributed the power of certainty, in terms of both diagnosis and prognosis.

In contrast, many other participants in this study reported problems with diagnosis, and were less likely to embrace medical discourse with such certainty. For them, the process of medicalization was lengthy and frustrating. For example, one mother reported it took a number of years for physicians to both detect and accurately diagnosis her daughter with

Hypothyroidism and ISS:

We did not really realize her growth had slowed for several years. Due to changes in insurance, we had to see different pediatricians for her 5, 6, and 7 year old well checks. This meant that no one caught that she wasn't really growing any more, and only grew about one inch in 3 years. I finally realized that this was an issue…

The ways in which parents engage with specific medical diagnosis – or a lack of diagnosis – is particularly interesting. In order to explore this issue further, parents were asked how they feel about these diagnostic labels, which terms they you use to describe their child of short stature, and whether the condition is permanent or is it temporary. For example, one mother expressed her varied emotions because of her son not receiving an official diagnosis:

We haven't actually received a specific medical diagnosis. We were just told that his steam test (sic) revealed that he was not producing enough GH. Of course, as we have been through testing, the terms short stature and growth hormone deficient have been utilized. I'm actually ok without having a label. The tests 90

show that my son is not producing enough GH, and we are receiving treatment to increase his growth hormone levels. While at times I wondered what the official label was, further reflection has me appreciating that we don't have a label for our son.

While this particular mother described her son in terms of medicalization (through the use of the term “growth hormone deficient”), gaining a broader sense of “life potential” was central to her goals opposed to him achieving a specific height. Another mother expanded her descriptions well beyond medical issues. She described her son who received a permanent diagnosis of Small for Gestation Age (SGA), as a “great kid, fun and hyper ... oh a little shorter than average.” Her description of her son’s condition was

“kind of open ended there isn't a real reason (sic).”

A White and Latino mixed mother initially rejected medicalized terms to characterize her son:

“RSS [Permanent]. I hate the phrase failure to thrive. At first when I heard the term dwarfism in regards to my son I was in shock. Now I fully accept the diagnosis and don't make a big deal of it.” She described her son as “Vertically challenged. We don't really talk about size and height though so I generally don't refer to it.”

In contrast, a mother with a son who has GHD and a daughter who received a diagnosis of ISS, immediately accepted both children’s diagnostic labels “They are an adequate diagnosis of their medical problems behind their short stature.” Another mother with daughter with a diagnosis of Russell-Silver syndrome and SGA indicated these labels are solely “diagnostic tools and not much more than that.” Moreover, she associated her daughter’s diagnoses as the primary means for obtaining medical treatments. She

characterized her daughter’s restricted growth condition as a “Permanent molecular abnormality.”

One mother also stated:

At first she was Failure to Thrive, but my pediatrician assured me she would catch up within two years. She never did, and was diagnosed at 6/7 with SGA. I don't know how I feel about the label. It's heartbreaking to not see a baby thrive no matter what you're doing. But she is small for her age, so it's pretty straightforward of a term, I suppose?

For this mother her primary concern was not her daughter attaining a “normalized” height, but achieving “health.” She stated “I don't know. She is a twin, so I don't think anyone expects her/them to be particularly tall or large. I just call her dainty. I just want her to be healthy; I don't much worry about her height.”

Some of the parents who participated in this study were highly educated. A mother with a Post Graduate Degree also viewed her son’s diagnosis as a mechanism for receiving

“necessary” medical treatment. According to this mother (whose son received a GHD diagnosis), “It is an accurate diagnosis based on multiple diagnostic tests. Of course I'm not thrilled with the diagnosis; however, I am happy to know that there is a treatment available. The only "label" is his diagnosis.” When asked if the condition was permanent or temporary, she specified “Hopefully temporary (8 years of injections to go).” Another mother with a Post Graduate Degree indicated her daughter’s medical conditions of hypothyroidism and ISS are “labels that are only useful for the doctors and insurance, and do not use them normally myself.” When describing her daughter and her restricted growth to others she stated “I tell people she has a growth disorder, or is on growth

hormone or small for her age. I don't like to use short” Although her daughter’s condition is permanent, she indicated “we are hoping that the growth she lost before diagnosis can hopefully be (at least partially) made up using growth hormone.”

Medicalization is not complete once a person has a diagnosis; it is necessary to continuously navigate the complex medical system, an experience that parents stressed is completely exhausting. One parent discussed being “overwhelmed with all of the medications and doctor appointments.” Another parent stressed the difficulty of locating the appropriate specialist to receive adequate care: “It took me a year, and 3 pediatricians, to finally get a referral to a specialist.” Falling through the cracks as a result of changing insurance was another finding.

There were many issues which lay outside the realm of the themes identified in previous studies. The following section of the Chapter discusses some of these, including issues of individuality, maternal blame, and experiences of infantilization, bullying and violence.

Issues not identified in previous research

Individuality

Each parent emphasized the individuality of their own child – this infused every comment they made, and every story they told. In doing so, they often had unique ways of describing their child’s embodiment, which dealt with a minefield of medical, 93

disability, collective, and individual issues. If the theoretical literature which was discussed in Chapter Two drove this results chapter, this may have simply been lumped under the category “resistance to medicalization.” But the grounded theory approach adopted in this thesis provides a fuller and more complete understanding of these descriptions. In the pilot interview with an adult spouse, she said that her husband had “a body of distinction.” This term was important, because it suggested the need for a closer examination of the ways in which people describe the unique embodiment of people with profound short stature.

When parents were asked “Which terms do you use to describe your child of short stature?” most of the respondents emphasized the ways their answers were structured by the context, and their own relationship with the other people involved in such a discussion. As one commented, “Depends on who I'm talking to and what the situation is.” Another said “I will say that she is small or little, but only when I have to inform someone about her diagnosis. When talking to her about what is going on we say that her size does not describe her. She is so much bigger than her height.” A third said “But, honestly, we don't talk about his short stature that much. We talk about how we want him to grow to his potential.”

While some did provide medical diagnoses, far more important were the loving and affectionate ways these children were described by their parents. In the dense and often negative focus of literature discussed in Chapter Two, it is easy to miss such joy. These occasions are not times when parents describe disabling barriers, or impairment effects. 94

And unlike the collective emphasis of the minority model, this discourse is entirely shaped by the individuality of the children. This sense of individuality is underlined in one comment: “…when she was extremely small for her age and pp would question, I'd always just say “She's the right size for her, for right now.” Another parent acknowledged her daughter “has different abilities than others” but she added “We choose to look at it differently.” When asked about her own feelings regarding the child’s diagnosis, she commented “She's healthy but will have issues as she get orders. Am I happy? No. But

I'm thrilled she is a miracle.”

Some of the terms parents used to describe their children – terms like “bunnybear” and

“little peanut” – immediately convey the affection in which they are given. But even more often, parents emphasized the importance of the child’s own name, rather than any other characteristic, as their defining identity. Even when it came to describing their height, some parents used non-medical terminology. Sometimes highly gendered terms were used - seven girls and one boy were described as “petite” and one girl was described as “dainty.” Other terms were more genetic. They included: “smaller,” “short,” “shorter than other girls her age,” “small for his age,” “different size,” “small or little,” “tiny,” and

“wee.” Parents were far less likely to use the terms that are central to the discourse of some advocacy organizations (such as “Little Person”). One used the term “vertically challenged.”

Others stressed the many wonderful qualities of their children as individuals. For instance, one parent said “He is: Healthy, Funny, Confident, Smart, Kind, Caring, 95

Compassionate, Athletic, Leader.” Another parent, a mother, said she would describe her child “The same as if she did not have short stature - smart, kind, generous, thoughtful, determined, anxious, type a, perfectionist, athletic, math-oriented.” Even when one parent was describing her child’s height, she added a word to describe her personality as well.

She wrote that her child was “Petite, little. Feisty ;).” The use of the smiling emjoi adds another dimension to the affection that parents have for these children. Having said that, there are undoubtedly negative social responses directed to these families as well as the children, as the following discussion demonstrates.

Maternal blame

It should not be assumed that negative attitudes were simply directed at the children; they were also aimed at mothers in particular. Maternal blame was a common experience, highlighting the importance of the connection between women’s bodies, children and disability. Such experiences were often made by other parents. For instance, one woman commented “Other parents have accused us of maltreatment due to their size.” On the other hand, a mother whose son received a diagnosis of Small for Gestational Age and described his condition as “Open ended there isn't a real reason” expressed her personal feelings of maternal guilt “When he was a baby I thought it was my fault he wasn't growing the way he should.” Likewise another said that:

I also remember when she was a baby always feeling like I was doing something wrong every time we went to a WIC appointment or doctor appointment because she never gained weight or grew and they always seemed to question if I was feeding her adequately.

A third commented:

I have had the typical comments of you just aren't feeding him enough but after 2 ½ years I just explain his condition & don't let it bother me so much - some days & sometimes are easier said than done.

These comments are consistent with the suggestion from some theorists discussed in

Chapter Two that contemporary governmentality is far more expansive than the medical realm, and involves multiple forms of surveillance. In this regard, surveillance is aimed at both children and parents. Some parents reported anxiety because they anticipate an invasion of their children’s rights in multiple contexts. For instance one parent indicated that she was “Worried about (her child) starting school… (and she would) worry about people taking photos of my young child and sharing on social media without my knowledge.

Infantilization, Dehumanization and Violence

The most common theme which emerged from the comments of research participants is that there children were infantilized. This is a quite distinct experience, unlike children of average size. All children are regarded as unable to make adult decisions due to their age, but the experience of children who are Little People tends to be quite distinct. They are almost always assumed to be much younger than their biological age. As well, this assumption can mean that they are dehumanized, as is evident in the following comment of a mother with a children with Panhypopituitarism “As a girl, not many - other children used to treat her like a ‘doll’ but she hated that.” As a result of such behavior,

“She prefers the company of animals and just a couple of friends.” Dehumanization also 97

results in other children physically picking them up such as the experiences of one nine- year-old girl with Hypothyroidism/ISS “She has had issues with students at school saying things about her size, and she hates it when other kids try to pick her up, which emphasizes they are bigger/stronger than her.”

Both peers and adults demonstrated infantilizing behaviors:

Adults and other kids always thought he was much younger than he was because of his size. His sister is 2.5 years younger than him and most thought they were twins. Since they thought he was much younger they treated him as he was younger than his age and it frustrated the heck out of him.

The behavior of peers was a constant problem. One respondent stated “Kids tend to treat him like he is a baby” and another said “My daughters get treated much younger than they are because they are small. Their peers don't understand that they are the same age as them.” A third commented “Other kids tend to treat her as though she's a younger child.” As a result of such negative attitudes, children with profound short stature may be denied the ability to demonstrate their skills. “Others try to help them do things that they can and want to do themselves.” In future studies, it might be worth exploring whether infantilization has gendered dimensions – for instance, connecting the infantilization of disabled children to the passivity which is often (unfairly and inaccurately) attributed to women.

The literature review highlighted the fact that “everyday ethics” – such as those involved in administering Human Growth Hormone on a daily basis – have not been explored in previous studies. In this study, parents indicated that utilizing such treatments reduced

infantilization, and other negative experiences. One commented that “She is often treated as younger than her peers, by peers and adults. This had improved over the 2+ years on treatment as she is now about the size of some peers.” In such a context, children often developed skills in deciding who to trust with sensitive information. “She doesn't like to talk about why she is smaller than other kids, but she has told some of her close friends about her growth hormone injections.” Another said mild teasing” was “much less since starting treatment and growing 4+ inches.”

As these comments indicate, height is a developmental issue which can change profoundly over the lifecourse. Some of the parents in this research suggested that their children had not yet reached an age where height differences were particularly significant. “(Child’s name) is only 4 and I don't think she is aware she is different” was one comment. Another parent suggested that her daughter “is just starting to become aware that she is little.” Other children were starting to become aware of their distinctive height: “She is at the age where it is really bothering her.” Another parent said that when her daughter “gets depressed about being little … I tell her it's okay to be different.” This theme of the acceptability of “being different” – sometimes rephrased into the positive value of being different – was emphasized by many participants in the survey.

School was identified as a site where children became particularly aware of their differences from other members of their age cohort: “My son definitely experienced negative feelings about being the smallest in his class.” Another parent stated “it's hard always being the smallest.” This awareness of physical difference often resulted in 99

negative comments – “There have been many comments about size and that she cannot compete with others in her age group.” However, some parents indicated that their children had flourished in a school environment. One stated “Our son is an honors student, a multi-sport athlete, a thespian, and president of the student council. He is very popular and is not short on confidence. Mom worries more than he does.”

However, it would be inaccurate to suggest that these children were simply the victims of prejudice and disabling barriers and not to recognize their own strength and resilience in resisting such disablism. The failure of the social model to recognize the agency of disabled people was highlighted in Chapter Two; this level of resistance is more consistent with Foucault’s notion that where there is power, there is resistance.

Parents described the ways their children refused to be held back by stereotypes and prejudices. “I think that's part of the reason he never let it stop him,” said one parent.

Another parent added:

I know that he wants to be the same size as his classmates, but he doesn't let that impact him. I asked him once if his friends ever said anything about his height. He told me "I just tell my friends that I'm smarter than how little I am.”

“We are just now beginning to see her height as an issue,” said one parent. Even though her child “is insecure and does not have many friends,” she does her best to avoid social isolation by interacting with parents. “She speaks to adults and tries to forge relationships in that way.” Another parent added that her child is learning more about her own

100

strengths and weaknesses as she encounters a disabling world. “She has grown in terms of working hard and learning what she can and cannot do well.”

Despite significant achievements in the face of many barriers, the emotional toll of medicalization (similar but distinct from the psychoemotional disablism discussed above) is another important theme that has been missed in previous studies.

The emotional toll of medicalization

A number of parents described their interactions with medical professionals and the engagement in prescribed health regiments as unfavorable. As opposed to the parents who framed medical intervention and the receiving of a diagnosis as tools for curtailing

“negative” emotions, these particular parents associated their experiences with medical professionals with feelings of anxiety and depression “The negative feelings I have are worry for him, frustration and sadness at the lack of support from medical specialists”

“I've always had anxiety about it since she was born. I have been very vigilant about food and calorie intake. Of course she's a twin, and that in and of itself is stressful. Depression for sure, the guilt of not being more firm in the beginning to get a diagnoses from the doctors.”

When respondents were asked to describe any personal (and/or their child’s) negative feelings such as depression associated with their child's restricted growth, specific sub-

101

themes emerged. These themes included the overlapping of child and paternal depression and maternal emotional distress during pregnancy. Child and paternal depression are not neatly divided; both phenomena immensely overlap. A prime example of this relationship was the mother of a daughter with Pseudohypoparathyroidism type 1A – a rare condition that she described as a “permanent genetic mutation.” She commented “This question is tough with a focus on her and me, but I know I have had a tough time. It’s hard to tease the size away from her other differences.”

Another mother said the following “I have experienced depression over my own dwarfism, but not over my daughters. She is very happy. I do worry about her future though and the challenges she may face with bullies and people not seeing who she is beyond her dwarfism.” A third parent stated “Not my child yet. I get very sad about it periodically- usually after a doctor’s appointment when his smallness is made obvious again.” And lastly the mother of a son with a diagnosis she described as “Severe Growth

Hormone Deficiency due to acquired Hypopituitarism” indicated “I would say more anxiety than depression! I have worked really hard over the past couple years to change my thinking to focus on positive things, even in tough situations.”

Experiences of emotional distress during pregnancy were also described by some mothers such as the following mother of twins “Not depression specifically, but to put it mildly, it's been an emotional roller coaster since our first trimester screening when I was 12 weeks pregnant with her and her identical twin. They're 21 months old now and it's still very emotional.” And a mother of a daughter who received the diagnoses of IUGR and 102

SGA expressed her feelings of prenatal depression and anxiety by stating “Yes, depression and anxiety. While I was still pregnant and we didn’t know how she would do once born.”

A mother whose teenage son is Growth Hormone Deficient expressed deep concerns regarding her son’s prescribed dietary regiment for gaining weight:

We worry he is a "class clown" to compensate for perceived deficiencies. We worry he will not make his 9th grade basketball team because he is too small (though his peers have more passion and work harder). We worry he will have to take shots his entire life. We worry his high-fat, high-protein diet is teaching him poor nutrition choices. We worry he is addicted to sugar, though his doctor says it is necessary for him to put on weight.

While the previously mentioned mother worried about her son’s physician advised treatment plan for achieving higher levels of height and weight, one mother detailed her son’s pediatrician’s inattentiveness regarding her concerns:

Yes. I certainly experienced negative feelings when I knew my son wasn't growing normally, but his pediatrician kept blowing us off with "you and your spouse aren't tall" and "he's probably just a late bloomer". My son probably was beginning to have negative feelings about it in the year or so before he was finally diagnosed.

Some of the parents reported feeling “guilty” for subjecting their children to extensive testing that “lead nowhere.” One research participant of a mother with twins with

Growth Hormone Deficiency reported a particularly disturbing encounter:

Our first pediatrician literally laughed at me when I told her I was concerned about my daughter's height. She told me that if I was a normal size woman, she'd be concerned, "but look at you!" The pediatric endocrinologist we eventually got referred to was wonderful from the start. He listened to my concerns, and respected me. He had a great bedside manner with my children as well.

103

Another mother said, “My doctor yelled at me when I asked if my son was a dwarf.

Looking back I was shocked, but I had no idea what was PC.” She indicated that her child actually had Russell-Silver syndrome and “often times I know more about RSS than they do.” Another parent described the “anxiety” she had experienced since her daughter was born. She also admitted feeling guilty about the diagnostic process: “Depression for sure, the guilt of not being more firm in the beginning to get diagnoses (Small for

Gestational Age) from the doctors.” Again, it is clear that diagnoses (and their effects) are thoroughly social.

For some parents, receiving a diagnosis offered a sense of validation and explanation for their child’s profound short stature “Only when we were worried that they could be underlying health issues causing it. Once we had the diagnosis of ISS, we have not worried.” These particular parents indicated feelings of reassurance that their children could more easily obtain a normalized height because of medical interventions such as

Growth Hormone replacement therapy. “It has also helped me to know it is very positive that we are starting treatment when he is only 3. I have read that many children to not get a diagnosis until 5-6 or 9-10... We have that much more time for treatment!” Another parent stated “I went through a process of acceptance and education when he was diagnosed at 18 months. He barely understands he has it. He's age 5, so it's not an issue at this time.” The social construction of profound short stature is apparent when one considers the ways parents changed their perceptions over time, as the following quote indicates: “I had more negative feelings when she was new to me than I do now. I know how to think about it now.” 104

Conclusion

This chapter has outlined the results of the research and has identified themes which were both similar to previous studies and different from them. The next chapter, the conclusion, highlights the practical, methodological, and theoretical implications of the study and identifies areas for further study.

105

Chapter 5

Conclusion

This Chapter, the conclusion, summarizes the findings of the research and outlines it’s practical, theoretical and methodological implications. It also identifies areas for further research. One of the principle contributions of this thesis has been to expand expanded the literature on the experiences of people with profound short stature by explicitly including new conditions that have only been identified in the post-genomic era, and to highlight the complexity of their diagnoses in the post-genomic era. The

‘chondocentric’ approach that has been applied to profound short stature in the past has not been helpful in exploring this complexity. Recognizing the variety of diagnoses which underlies the community of “Little People” is a key step in developing a more holistic perspective that integrates interconnected social, psychological, ethical, medical, disability and embodied issues. This research has broken new ground by exploring people who experience profound short stature as a result of many conditions other than

Achondroplasia. It is the first study that has included people with profound short stature as a result of conditions such as Turner Syndrome, Russell Silver Syndrome,

Osteogenesis Imperfecta, Growth Hormone Deficiency, and “Failure to Thrive.”

106

The demographics of the participants in this research were discussed in the methodology chapter. It was noted that many (but not all) of the participants in the MAGIC

Foundation and the LPA are white and wealthy. It is not clear whether the impairments are more likely to occur among Caucasians, or whether people of color were simply less likely to belong to such organizations. Specifically, targeting diverse populations of people with profound short stature may be a useful component of future research so that such dynamics can be understood more effectively.

An important practical implication of this study is that it is necessary to expand the range of impairment organizations used to recruit research participants in studies on profound short stature. Almost exclusively, the LPA has been the organization where most people researching the social experiences of people with profound short stature have connected with research participants. Medical research has largely been conducted via endocrinology practices, but social science research has tended to rely on the LPA for recruitment of research participants. This limitation may be addressed by medical sociologists engaging in cross-disciplinary research with medical institutions, but it also may be useful to consider alternative organizations, such as the MAGIC Foundation, because they contain people with many diagnoses outside Achondroplasia.

The research participants in this study highlighted a number of practical concerns which need to be addressed. This research may be helpful in identifying areas for improvement in medical practice. It is particularly important for medical professionals working with these children to understand the frustrations of parents who can wait years for an 107

appropriate diagnosis. Issues of maternal blame can also be addressed earlier by doctors, playing a role in gender equality rather than recirculating sexist discourses that blame women for all the health conditions experienced by their children.

There are also many practical implications of this research for educational institutions, where the lack of accommodations and the hostile social environments have hampered the education of many children with profound short stature. One of the unique experiences of children with profound short stature – unlike other children – is that they are picked up or called ‘dolls’ in a way that not only infantilizes them, but also dehumanizes them. Parents reported that such cruel practices had happened at the schools where they sent their children. They also indicated that these social dynamics have profound effects on their child’s self-esteem and self-confidence.

One of the most interesting methodological considerations arising from this research involved the degree to which a researcher negotiates the research agenda with organizations where they are embedded. The ways in which the MAGIC Foundation asserted its rights in terms of the content of the survey is an important reminder that parents, and the organizations which represent them, have rights not just when it comes to information about their children, but also in terms of setting research agendas. Fieldwork can require a great deal of sensitivity, particularly with such intensely personal topics as the bodies of children with profound short stature.

108

The internship with the MAGIC Foundation, personal interactions with parents, physicians, family members and people with profound short stature, as well as organizational leaders, provided a rich array of data to be explored not just in this thesis but also in future articles. But the centrality of the organization – and the researcher’s embeddedness within it – to this research cannot be denied. Even though the researcher is an ‘insider,’ in terms of being the parent of twins with profound short stature, the act of research means that many people are less trusting than they might have been otherwise.

The researcher needed the support, endorsement and partnership with the organization to ensure that the research goals were met. But this partnership came with costs – most obviously when the organization vetoed detailed questions about embodiment. It is important for future research to explore such tensions, and to discuss ways of resolving the (potentially) competing needs of researchers, research participants, and advocacy organizations.

The thesis has also demonstrated the value of engaging with a wide range of theoretical approaches towards impairment and disability. The thesis combined insights from disability studies, Foucauldian approaches to medical power, and bioethics as well as medical sociology. This interdisciplinary approach meant that an incredibly wide range of experiences was able to be included in the discussion and analysis, including disability, impairment, identity normalization, medicalization and biopolitics, in many forms. The theoretical approach meant that the thesis not only explored disability in terms of physical and attitudinal barriers, but also thoroughly integrated impairment experiences and analyzed the ways in which people accept/challenge/navigate/negotiate their 109

disability identities, within the broader context of normalization, medicalization, and biopolitics.

The true value of a grounded theory approach is that data which has not been identified in previous studies is identified in ways that were completely unexpected if one simply accepted and applied an existing theoretical approach. In this thesis, the benefits of the use of grounded theory became most apparent when parents talked about the ways their own child navigated their embodiment in unique ways; the ways in which maternal blame was thoroughly infused in many of the social experiences of parents; the extraordinary levels of infantilization, dehumanization and violence experienced by these children; and the emotional toll which arises from medicalization.

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Appendix A

Glossary of Medical Terminology

Achondroplasia A specific genetic condition that causes short-limb dwarfism. A characteristic of the condition is disproportionately shorter limbs. It is the most common form of dwarfism.

Failure to Thrive The term used to describe children whose rate of weight gain is significantly lower than children of the same age and sex.

Growth Hormone Deficiency (GHD) Commonly referred to as Pituitary Dwarfism, this condition causes the pituitary gland to not secrete adequate amounts of human growth hormone and it is often associated with other genetic conditions including Turner syndrome and Prader-Willi syndrome. It more commonly affects children, but adults too can have the condition. GHD results in restricted growth and delayed puberty. Children who receive Growth Hormone Therapy typically reach close to average adult heights.

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Hypopituitarism This condition causes the decreased secretion of one or more of the eights hormones secreted by the pituitary gland. One of the symptoms of

Hypopituitarism is short stature in children.

Idiopathic Short Stature (ISS) A clinical term used to describe extreme short stature that is not linked to a diagnosis. Those with this condition have a height below two standard deviations of the mean for age and sex. Treatment of ISS is controversial since people with this condition typically do not have any pituitary deficiencies. But using

Growth Hormone Therapy is an increasingly common practice with both parents and clinicians pushing for this care regiment.

Intrauterine Growth Restriction (IUGR) A condition that occurs during pregnancy where the baby is not growing at steady rates within the womb.

Jeune syndrome Also referred to as Asphyxiating Thoracic Dystrophy this rare condition is both genetic and congenital. It affects the development of children’s bones and cartilage. Complications include renal and hepatic problems and respiratory infections.

While there is no cure for the condition, symptoms can be managed.

Osteogenesis Imperfecta (OI) A group of genetic conditions that causes fragile, brittle bones. A hallmark characteristic of OI is the easy fracturing and breaking of bones.

Treatment regiments are centered on managing symptoms and increasing mobility.

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Panhypopituitarism This term refers to the insufficient discretion of the anterior pituitary hormones. Panhypopituitarism can be present by itself or a manifestation of other medical conditions such as Pallister-Hall Syndrome. Children with this condition frequently experience short stature and delayed puberty along with other symptoms such as fatigue, weight loss or gain, and diabetes insipidus.

Primary Insulin-like Growth Factor Deficiency (IGFD or IGF1) Referred to as

Growth Hormone Insensitivity Syndrome or Growth Hormone Resistance Syndrome this condition was discovered over recent years. A single gene has been identified as the cause of IGFD. The diagnosis of IGFD is a tedious process. It is made by monitoring a child’s growth and dismissing other underlying causes of short stature, particularly the possibility of growth hormone deficiency. After these conditions are discounted, an endocrinologist may attribute Primary Insulin-like Growth Factor Deficiency for the cause of short stature.

Primary Microcephaly (MCPH) MCPH is an inherited condition that affects the development of the brain in infants and children within the first few years of life. A distinctive characteristic of this condition is smaller head circumference when compared to children of the same age. Additionally, children have smaller brain volumes. Effects include learning difficulties, seizures, impaired motor functions, and delayed language skills, sloping of the forehead, problems with attention and behavior, and short stature.

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Pseudohypoparathyroidism Classified as an extremely rare genetic condition,

Pseudohypoparathyroidism is a blanket term for those who exhibit PTH-resistant hypocalcemia and hyperphosphatemia along with calcification and ossification of the bones. This condition causes the body to be resistant to the hormone parathyroid which is a chemical that controls calcium, phosphorous, and vitamin D in the blood. People with this condition are often of short stature, have rounded faces, and shortened bones of the hands and feet.

Pseudohypoparathyroidism 1a This condition is a specific type of

Pseudohypoparathyroidism. Those with this health issue are also resistant to thyroid- stimulating hormones and gonadotropins. It presents all the typical symptoms associated with Pseudohypoparathyroidism.

Pseudotumor Cerebri People with Pseudotumor Cerebri have high pressure in the brain. The health condition is idiopathic and symptoms are similar to a brain tumor.

Some of the health implications include dizziness, distortion of vision, depression, and forgetfulness. While it is unclear who is more susceptible to develop this condition, research suggests that those who have thyroid disorders, chronic kidney failure, pregnant women and overweight people are most at risk.

Small for Gestational Age (SGA) A term used to describe fetuses who are significantly smaller than their gestational age. Commonly, babies who are SGA are born with a weight below the 10th percentile.

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