Dwarfism, Spatiality and Disabling Experiences

Erin Pritchard

• Publisher: Routledge
• Year: 2020
• eBook ISBN: 9781000283693
• Topic: Social Sciences
• Subtopic: Labour & Employment Law
• Index: Social Sciences

This book provides an in-depth analysis of the social and spatial experiences of people with dwarfism, an impairment that results in a person being no taller than 4' 10".

This book engages with the concept that dwarfism's most prominent feature – body size and shape – can form the basis of social discrimination and disadvantages within society. By ignoring body size as a disability, it is hard to see the resulting disabling consequences of the built environment. Using a mixed-methods approach and drawing on the work undertaken by human geographers and disability studies academics, this book analyses how the relationship between harmful cultural stereotypes and space shapes everyday experiences of people with dwarfism and works to socially exclude them in diverse ways. Showing how spatial and social barriers are not mutually exclusive but can influence one another, this book responds to the limited academic work on the subject of dwarfism, whilst also contributing to the study of geographies of body size.

It will be of interest to all scholars and students of disability studies, human geography, the built environment, sociology and medical humanities.

1 Introduction

1.1 Introduction

Dwarfism is a medical condition that results in a person being no taller than 4' 10'' (Adelson, 2005a). Known medically as skeletal dysplasia (Shakespeare et al., 2007), there are over 200 different types of dwarfism with underlying impairments that often differ. Spinal stenosis, for example, is mostly associated with a form of dwarfism known as Achondroplasia. Depending on the type of dwarfism, a person’s body is either disproportionate or proportionate in size. People with dwarfism who are proportionate appear only to be small in stature; their arms, legs, trunk and head are in the same proportion as an average-size person. Examples of proportionate dwarfism include primordial dwarfism. People with dwarfism whose bodies are disproportionate have a torso of average size but short arms and legs. Achondroplasia is an example of disproportionate dwarfism and is the most common form of dwarfism. It is estimated that approximately 250,000 people have Achondroplasia worldwide (Horton et al., 2007). The cause of Achondroplasia is genetic.

This book revolves around dwarfism’s most prominent feature—body size and shape. It engages with a social constructivist understanding of disability to demonstrate the social implications of having a body size which does not meet society’s standard. The social model of disability argues that disability is the result of a society that does not take into account the needs of disabled people, and thus physical structures lead to inaccessibility (Oliver, 1990). This book shows that people with dwarfism are disabled through unaccommodating public spaces, which do not take into account the small body. It explores the spatial barriers people with dwarfism encounter due to their small stature and how they deal with these barriers. This book aims to create a broader understanding of the social and spatial experiences of people with dwarfism, whilst attempting to respond to some of the misconceptions about dwarfism, including its contention as a disability. This book contributes to both Social geographies and Disability studies, showing how a bodily difference, which is predominantly about height, is disabled by a ‘one size fits all society’. As disability can be understood as a social construct, applying a geographical perspective can aid in further understanding how the built environment is disabling for people with impairments.

Geographies of disability consist of a diverse range of research which explores the socio-spatial experiences of disability (Butler and Bowlby, 1997; 1999a; Chouinard et al., 2010; Dyck, 1995, 1999; Edwards, 2013; Crooks et al., 2008; Hall, 2004, 2007, 2010, 2011; Hall and Kearns, 2001; Gleeson, 1997, 1999a, 1999b, 2000; Hahn, 1986, 1996; Hawksworth, 2001; Imrie, 1996a, 1996b, 1999, 2000, 2004, 2012; Imrie and Edwards, 2007; Imrie and Hall, 2001; Kitchin, 1998; Kitchin and Law, 2001; Moss, 1999; Moss and Dyck, 1996; Parr, 1997; Parr et al., 2004; Philo, 2005; Philo et al., 2005; Worth, 2013). Adopting the views of Mike Oliver (1990), Gleeson (1997, 1999a, 1999b) argues that disability is the result of industrialisation within western societies, which includes inaccessible buildings and transport systems, as well as devaluing cultural imagery. Kitchin (1998) argues that it is important to recognise the role of space in reproducing and maintaining disabled people’s exclusion from the built environment. Soja (1989) argues that space is a social product and shaping force in social life.

The book uses the term ‘socio-spatial’ barrier throughout. Space is a structure, but with addition of the term ‘socio’ it becomes a social product (Soja, 1989). The French Sociologist Henri Lefebvre (1991) is credited with the idea that spaces are socially produced. According to Lefebvre (1991:289), ‘(social) space is a (social) product’. The social production of a space is important to consider as it helps us to explore how spaces are created in a way that does not take into account people with dwarfism and thus means that they will experience the built environment differently to other people.

According to Lefebvre space can be conceived as a triad, which contains representations of spaces, representational space and spatial practice in order to understand how spaces are socially produced. Lefebvre (1991) suggests that representations of space are conceived spaces designed by planners. The representations of space influence the meaning and materiality of a space. The materiality is associated with the physical structure of a space, whilst the meaning is associated with how it will be used and by whom. How a space is conceived by planners can impact the spatial practice of different users. The spatial practice relates to how people negotiate and use different spaces. Representational space relates to the meaning of that space to the user, which in turn also impacts people’s spatial practice.

A spatial barrier is physically inaccessible and using the addition of the term ‘socio’ can be seen as a barrier created by ableist planners and architects who do not take into account the needs of people with dwarfism. This in turn leads to disabling situations, impacting the spatial practice of people with dwarfism. These disabling situations become entwined with social interactions when people with dwarfism have to ask for help or draw attention to themselves when interacting with a space differently. The word barrier can also be taken to mean obstacle—obstacles that can either restrict access or be overcome somehow. A barrier does not necessarily mean that a person encounters a physical barrier and therefore it cannot always be overcome; it just inhibits a person’s use of a space or particular facility.

How we experience spaces is dependent on our identity. Massey (1994: 3) suggests that, ‘the social relations of space are experienced differently, and variously interpreted, by those holding different positions as part of it’. This is where it is important to introduce the notion of ableism. According to Chouinard ableism is ‘a set of ideas, practices, institutions and social relations that presume ablebodieness and by doing so constructs persons with disabilities as marginalised and largely invisible others’. In relation to dwarfism, ableism is constructed by heightism and has existed for centuries. Heightism can be defined as a form of discrimination experienced by people whose height deviates significantly from the norm. As tall stature is revered within society, people with dwarfism are likely to experience heightism in different forms, such as having to interact with spaces that are not size suitable for them.

As spaces are a social product, then it is fair to say that they are created for the non-disabled person, which impacts how disabled people interact and navigate through these spaces. In relation to dwarfism, Kruse (2002, 2010) argues that spaces are ‘statuarized’, in other words designed for the average-sized person. This impacts how people with dwarfism interact and navigate through spaces. The statuarization of spaces can be applied to both the meaning and materiality of them. According to Kruse (2002), spaces are physically constructed to suit the average-sized person (materiality) and contain messages that encourage tallness to be revered (meaning). In consideration of spaces being statuarized, it is also important to explore work within geographies of body size.

Within Social Geography, the subject of body size is now gaining momentum with a growing body of research which focuses on how the sized body interacts with and experiences spaces (Colls, 2004, 2006; Evans et al., 2012; Hopkins, 2012; Longhurst, 2005, 2010). As representations of spaces are based upon the average-sized person, then it is important to understand the spatial practices of body sizes that exceed the norm. Drawing upon theories within Disability studies, Geographies of body size recognise the spatial barriers for people who are not of average size. By understanding different spatial relations, we can explore how different spaces are disabling for people with dwarfism. This relates to the notion of normalcy and how the construction of spaces results in disabling experiences for those whose body size deviates from the norm. Overall, it is suggested that disability is a product of society and not a person’s bodily difference, and thus disability can be reduced or eliminated through taking into account the needs of various impairments as well as challenging attitudes.

1.2 Aims and objectives

The book explores a number of key questions concerned with the social and spatial barriers experienced by people with dwarfism within public spaces:

• How do people with dwarfism negotiate spatial barriers in the context of unaccommodating structures?

• What social responses do people with dwarfism experience when dealing with spatial barriers within public spaces?

• Do people with dwarfism avoid certain spaces in order to avoid negative social situations?

• Do resources which are nominally called ‘accessible’ help or hinder people with dwarfism in their negotiation of public spaces?

• How do people with dwarfism feel that cultural representations of dwarfism affect society’s treatment towards them?

There are a number of elements which can affect how people experience different spaces. In relation to dwarfism, it is important to consider some spatial practices which are unique to them. For example, it is not expected for the non-disabled person to interact with a space differently, as that space has been created with the notion that they can carry out a task in the way expected, due to the way that space has been constructed. However, as most spaces will not have been created for people with dwarfism, their spatial practices will differ. This book explores the social barriers people with dwarfism encounter when dealing with spatial barriers, providing a transition from the spatial to the social, and showing how one can possibly lead to the other. Additionally, by including ‘accessible’ spaces and facilities within a discussion of dwarfism and disability, the book problematises the idea that such spaces are always a suitable option for people with dwarfism.

In order to gain a deeper understanding of such social experiences, this book questions the role of cultural representations of dwarfism and whether they contribute to how they are perceived within society that could lead to social barriers. Dwarfism is saturated in cultural baggage that includes harmful stereotypes, deeply affecting the rights and social experiences of people with dwarfism. Most people will have never met someone with dwarfism, but will recall seeing them in some form of entertainment, which shapes how they perceive them. According to Haller (2010), people’s perceptions of disabled people are largely media-driven. These perceptions are constructed by ableist representations of dwarfism that have been around for centuries. Ablon (1990) points out that dwarfism is a physically distinctive and easily recognisable impairment and thus seeing a person with dwarfism in public is likely to provoke a reaction. This book is particularly interested in what spaces and situations such reactions occur within. It argues that the implications of such reactions result in psycho-emotional disablism that influence the way a person with dwarfism negotiates different spaces.

1.3 Motivation and justification

My motivation for writing this book is both personal and academic. I have dwarfism, and throughout my life I have experienced numerous social and spatial barriers. I have come to realise that I navigate spaces differently. For example, I often avoid spaces that I know to be inaccessible or where I am likely to receive unwanted attention, evident in past experiences of that space or just from observing the space and its occupants. Shakespeare et al. (2010) suggest that people with dwarfism often avoid locations where they receive unwanted attention. It is easier than dealing with the unwanted attention from average-sized people and their children, especially when trying to counteract negative attitudes usually results in more abuse.

My Achondroplasia does not only cause short stature but has a number of other secondary impairments, including spinal stenosis which causes both pain and mobility impairments. However, I find that the biggest obstacles that I encounter are related to society’s response to my short stature. Additionally, I am often told that I am ‘not disabled’ by people who barely know me. They state that I can walk, so they ask how can I be disabled? Yet they do not see me struggle using an ATM, high counters, and having to have my car adapted to be able to drive like them. The dirty looks I get for walking to my car parked in the disabled bay continue, despite the pain brought on by my spinal stenosis, or having to carry shopping bags weighing me down because the shopping trolley is too big for me to use.

I have also grown up and seen people with dwarfism in various forms of media and noticed that because of their dwarfism, the way they are represented is often harmful and inaccurate. They are never shown as fully human or as someone experiencing the realities of dwarfism. I felt that the rarity of dwarfism, coupled with such misrepresentations, means people fail to see the disabling experiences associated with dwarfism. My identity is constructed by strangers who rely on misrepresentations, often leading me to be ridiculed and mocked. The audiences would see people with dwarfism running around and making fools of themselves, but they would never see people with dwarfism within society struggling to walk or being angry because they were unable to do something as simple as posting a letter. I wanted to know what other experiences people with dwarfism had and if I could bring them together in order to make them visible to a wider audience.

My other motivation for writing is academic. There is a limited amount of literature available on the lives of people with dwarfism, with a few exceptions, such as where they are featured in books focusing on human oddities and freaks (Adelson, 2005a). These books usually contain a number of images of people with dwarfism from the early Victorian era, such as Charles Stratton, aka ‘General Tom Thumb’, who was often paraded around for people to see, including Queen Victoria. These kinds of books provide a way of allowing the reader to stare at people with bodily abnormalities whilst providing very little understanding about their everyday lives. I flicked through one of these books as a child and although I shared an impairment with some of the people featured in them, I could not relate to them. They somehow seemed exotic and not part of society. What I did not realise at the time was that I was being exposed to an ableist representation of dwarfism, which impacted how I viewed dwarfism and accepted my own impairment.

As well as people with dwarfism being represented as freaks or oddities, Kruse (2003) suggests that there is very little academic research that focuses on the social aspects of dwarfism, rather research tends to focus on the medical side of the impairment. Thompson et al. (2008) review the current literature available in relation to the medical, health and social aspects of dwarfism and suggest that not only is research limited, but is often unreliable. This is because of an over-emphasis on the experiences of children with dwarfism; there are few books which give an insight into the lives of adults with dwarfism. This book will engage with the limited, yet important, literature on adults with dwarfism, but is groundbreaking because of its applied and interdisciplinary focus that combines Social Geography and Disability studies. I want to show people with dwarfism as everyday people as opposed to oddities, adding to the limited academic literature that focuses on the everyday lives of adults with dwarfism.

To gather the data used in this book, a qualitative methodology relying on semi-structured interviews which incorporated photo elicitation exercises was adopted. Photo elicitation exercises were added to understand how people with dwarfism experience public spaces and why they may navigate them differently. Twenty-two interviews, mostly with women with dwarfis...

Table of contents

• Cover
• Half Title
• Series Page
• Title Page
• Copyright Page
• Dedication
• Contents
• Acknowledgements
• 1 Introduction
• 2 Access tall spaces
• 3 Resisting spaces
• 4 Disabling identities
• 5 Cultural representations of people with dwarfism and the social consequences
• 6 Conclusion: the politics of space, identity and the sized body
• References
• Index