Introduction to Disability Studies: Rethinking Normalcy

Disability Matters

The introduction to Titchkosky and Michalko's (2009) Rethinking Normalcy: A Disability Studies Reader emphasizes the intricate relationship between disability, the study of disability, and the emerging field of disability studies. These three concepts are not linearly connected but rather form a complex, circular, and interconnected web of meaning. Understanding this web is crucial for introducing disability studies, which advocates for new approaches to thinking about and engaging with disability.

The book aims to introduce readers, particularly within the Canadian academic context, to the rapidly growing field of disability studies. A core premise shared by those in this field is that disability is a social and political construction. This perspective necessitates addressing disability in both academic work and daily life. A unique focus of this book is "normalcy," with disability studies recognized as a means to challenge and disrupt the "dangerous illusion about the meaning of normality" (Finkelstein, 1998, 30). The readings implicitly and explicitly unravel the meaning of normalcy by exploring its reciprocal relationship with disability.

Normalcy and the Study of Disability

Disability is universally defined and understood, with these definitions often rooted in the interests of those doing the defining. This definitional work is not exclusive to professionals in medicine, rehabilitation, or even disability studies; everyone holds some conception of what disability entails. In contemporary Western culture, there's a pervasive, often negative, sentiment towards disability. Non-disabled individuals typically avoid becoming disabled, and disability frequently evokes sympathy, being perceived as an unfortunate personal tragedy.

However, this perception is challenged by statistics. Colin Barnes (1998, 65) highlights the scale, noting approximately $50$ million disabled people in Europe and around $500$ million worldwide, making the idea of disability as a rare medical problem unsustainable. Nonetheless, many institutions and individuals continue to operate from the premise that disability is a rare and anomalous personal tragedy.

This "personal tragedy" model forms the foundation for the traditional study of disability. Professions such as medicine, rehabilitation, counseling, and special education dominate this approach. While each profession defines disability uniquely, they universally understand it as a personal problem beset with issues requiring solutions (Mitchell, 2002, 15). This narrative forces disabled people in Western cultures into a profoundly ambivalent relationship with their societies, perpetuating the belief that disability is merely a problem to be contained and managed.

These helping professions prioritize the following:

Prevention of disability.
Cure of disability if prevention fails.
Making a disabled person feel and appear as "normal" as possible if cure fails.

This approach defines disability as a physical, sensory, emotional, or intellectual "abnormal condition" affecting a few individuals. A significant consequence is that disabled people are viewed as a random collection of individuals with "abnormal" conditions, which can then be quantified as a rate within a population.

The Canadian government, for instance, reflects this understanding:

Over $12$ % of Canadians (approximately $3.6$ million people) have a disability.
Disabilities can be congenital or acquired later in life due to accident, illness, or disease.
Canada's Aboriginal population experiences a particularly high rate of disability—more than $1.5$ times that of the non-Aboriginal population.
The majority of Canadians with disabilities have mild to moderate conditions, which can be mild or profound, temporary or permanent (Canada, 2004, 8-11).

Under this governmental framewor, disability is a quantifiable "thing" that can be counted, measured, its causes discerned, and its demographic distribution charted. It is not understood as a way of life shaped by cultural relations, material conditions, or societal understandings of what it means to be human. Diversity within disability is measured in terms of "severity, longevity, cause and consequence" and its casual relation to "personal, social and economic disadvantages" (Canada, 1998, 11).

The goal of professions committed to the study of disability is to minimize negative effects and help disabled individuals "fit" into "normal" society, stressing "normal individual" and "normal functioning." Disability is thus conceived as an "abnormal" and "unnatural" condition requiring individuals to cope with and adjust to it. This approach is committed to "normalcy" as the only life worth living, sustaining it as the singularly good way of being-in-the-world. This commitment to personal adjustment leaves "cultural assumptions that structure the normal unquestioned" and unacknowledges "disability as a political issue, a social construction… and a category of inquiry" (Rosemarie Garland-Thomson, 1996, xvii).

Ultimately, the study of disability is the development of expertise—in biomedicine, rehabilitation, counseling, and special education—to discern the cause, measure the severity and longevity, and predict the consequence of disability, all with the aim of remedy. Disturbingly, "remedy" often translates to ridding society of disability (Michalko, 2002, 73ff; Titchkosky, 2007, 145ff, 177ft). This expertise is typically developed without the participation of disabled people themselves, who are often reduced to objects of professional study. While this has fostered a "gigantic 'helping' industry" (Albrecht and Bury, 2001; Oliver, 1996; Zola, 1982), it has failed to alleviate the pervasive marginalization and discrimination faced by disabled people. High unemployment and non-labour force participation rates persist globally, education rates remain low, and a significant portion of disabled individuals (one-third in Canada) report not receiving necessary assistance and supports (e.g., www.hrsdc.gc.ca, www.statcan.ca).

Cultural perceptions reinforce that disability is an unwelcome feature of life, viewing it as an "abnormalcy" that should be removed or, if not, coped with as a "second-best" option. This framework operates within an implicit concept of a "normal range" of variation. While minor sensory issues might be seen as normal differences, conditions like blindness or deafness are considered "abnormal differences" that cause worry and prompt professional intervention to normalize them (Davis, 1995). The commitment to the study of disability, therefore, is fundamentally a commitment to normalcy as the standard against which all human life is measured, equating proximity to normalcy with proximity to being fully human.

This commitment necessitates precise definitions and measurements of disability to compare individual experiences against the "normal" standard. Questions asked often revolve around how disabled individuals can perform "normal" tasks, control disorders, develop coping strategies, or utilize non-impaired body parts to live "as normally as possible."

Disability Studies and Normalcy

Disability studies approaches disability and normalcy in fundamentally different ways than the traditional study of disability. It does not strictly "study disability" as a discrete "thing-in-the-world" or an object of inquiry. Consequently, there is no need for precise, positivist definitions measured against a standard of normalcy. Instead, disability is understood as a "fluid and shifting" set of meanings intrinsically linked to the broader question of what it means to be human (Shildrick and Price, 1996, 93). It is deeply connected to and reflective of the social contexts in which it appears.

From the perspective of disability studies, disability is an integral part of the essential diversity of human life, not an unfortunate negative happenstance. It is a legitimate "way of being-in-the-world" and a valuable aspect of human difference, akin to gender, race, sexuality, and ethnicity. Its significance is shaped by the structures of normal life. The field acknowledges that while disabled people face marginalization, these processes of marginalization are precisely what make disability relevant to disability studies. Bell hooks (1990, 342) eloquently states that "margins have been both sites of repression and sites of resistance," suggesting that examining the margins can reveal and challenge the norms of the center. Disability studies leverages this by interrogating the centrality of normalcy to resist the devalued marginality imposed by society.

Unlike traditional approaches, disability studies does not perceive disability as a problem to be solved. Rather, it views disability as a disruption to normalcy, which renders the taken-for-granted character of normalcy "visible." This visibility opens normalcy itself to exploration and critique. Disability, therefore, serves as an occasion for disability studies to interrogate normalcy, question its origins, and expose its constructed nature. Often, normalcy is implicitly accepted as the "good life" and the only life worth living; disability allows this normative claim to be brought into view for critical examination.

Disability studies interprets disability as a socio-political phenomenon that exposes how "normal life" itself generates disability. The "blueprint" of normalcy—which shapes both physical and attitudinal environments—typically excludes disabled individuals (e.g., stairs for sighted/walking people, sounds for hearing people, without accounting for voice descriptions, accessible washrooms, or sign interpreters)..

Paradoxically, normalcy can be compelling and even seductive to disabled people, leading them to fight for access to the center, identify as "persons with disabilities," "simply people," or "just like everyone else," and prioritize personhood over disability. This desire to belong to the very system that marginalizes them highlights the powerful allure of normalcy.

Normalcy reinforces its dominance by portraying marginality as a "no-where" or an uninhabitable space of devalued life. It presents only two options for disabled people: to become "heroic" by overcoming their disabilities or to be "tragic" if they do not. This perspective blinds normalcy to alternative possibilities of human life and to its own constructed nature. However, the margins possess their own compelling and seductive character, offering a space to resist the temptation of normalcy and reveal that the center is not natural but human-made and thus alterable. The challenge lies in developing a relationship with the desire for normalcy that does not simultaneously reject life on the margins.

Drawing a parallel with racialized experience, bell hooks (1990, 342) emphasized how marginality can be a site of resistance, allowing for a way of knowing reality that affirms sustained opposition through remembrance of the past. Her mother's advice to her—"You can take what the white people have to offer but you do not have to love them"—is recontextualized for disability studies: "You can take what… [those who study disability]… have to offer but you do not have to love them." "Loving them" here refers to internalizing the dominant, medicalized views of disability, which risks estrangement from one's own disability experience and compromises disability studies' power to resist the ideology of normalcy. The margins, while sites of oppression, are also crucial spaces of resistance.

Now Is the Time for Disability Studies

Henri-Jacques Stiker (1999, 362) notes that "deformity of the body, troubles of the mind, loss of senses, have always worried social groups." Since the Enlightenment, disability has primarily been the domain of professional and academic disciplines focused on "management, repair, and maintenance of physical and cognitive incapacity" (Mitchell and Snyder, 1997, 1). This managerial approach has suppressed critical reflection on how normalcy's voice dominates disability experience.

Even before disability studies emerged as a formal field, critiques challenged these dominant approaches. The Union of the Physically Impaired Against Segregation (UPIAS) in the UK, over $30$ years ago, made a crucial distinction (1975, page 14 in original document):

Impairment: Lacking part or all of a limb, or having a defective limb, organ, or body mechanism.
Disability: The disadvantage or restriction of activity caused by a contemporary social organization that takes little or no account of people with physical impairments, thus excluding them from full participation. UPIAS declared, "society which disables physically impaired people," framing physical disability as a specific form of social oppression.

For disability activists, artists, and scholars, centralizing the social character of disability remains paramount. While some maintain a clear distinction between impairment and disability (e.g., UPIAS), others advocate for blurring this distinction (e.g., Oliver, Barnes, Corker, Michalko). Regardless, the fundamental principle across global disability studies is to firmly locate disability within the social realm.

The diverse interpretations of what "social" means in relation to disability have led to rich theoretical and political developments. For instance, bodies are not asocial; society shapes what is considered impairment, lack, or defect. Lessons can be drawn from society's failure to accommodate impaired bodies, from the experience of embodiment, and from differing sensory and emotional experiences. The persistence of societal barriers, often treated as "natural," prompts disability studies to question the concept of "natural" itself as a component of the normative order that perpetuates exclusion and oppression.

Disability studies promises to challenge our taken-for-granted ideas about body and mind, impairment and disability, nature and culture, and even the distinction between non-person and person. Its interdisciplinary nature, ranging from "materialist Marxism to post-structuralist cultural studies," fosters a dynamic environment for engaging with the assumptions and meanings of normalcy in novel ways. Catherine Kudlick (2003, 763, citing Linton, 1998, 2) characterizes disability studies as taking "for its subject matter not simply the variations that exist in human behavior, appearance, functioning, sensory acuity, and cognitive processing, but, more crucially, the meaning we make of those variations." By analyzing disability as a social category rather than an individual characteristic, it elevates the field beyond traditional rehabilitation or special education concerns.

With growing global recognition, disability studies is increasingly integrated into the social sciences, humanities, and health sciences. Given that the meanings of our bodies, minds, senses, and emotions are interwoven with every aspect of social life, disability provides a critical lens for examining society as a whole. The field advocates for relinquishing the normative demand to "fix" impairments and instead embracing new ways of understanding social relations with bodies perceived as different. The Rethinking Normalcy reader aims to facilitate this shift in thinking, emphasizing the "resistive power of the margins" and offering a critique of dominant cultural understandings of disability.

Organization of Rethinking Normalcy

The book is structured into six parts, each exploring different facets of disability studies and its engagement with normalcy:

Part I: Disability Studies and the Question of Normalcy

This section delves into the foundational principles and central questions of disability studies. It offers a conceptual history of the field, highlighting the critical interrogation of normalcy as a socially constructed phenomenon, rather than a natural, unquestionable state. It examines how normalcy intertwines with bodies, minds, senses, and emotions through personal, historical, institutional, and cultural manifestations.

Part II: Normalizing Suffering

This part challenges conventional understandings of suffering. It illustrates how disabled people experience suffering due to the normative demands of social life, and how society often frames this suffering as an individual issue, thereby normalizing it, instead of recognizing it as a collective societal concern. Disability studies re-locates suffering squarely within the societal realm.

Part III: Institutionalizing Normalcy

This section explores how social institutions approach disability, often reducing it to a matter of management (e.g., charity, individual problem, bureaucratic issue). It critiques common management strategies, which might include eugenic programs to eliminate disability or educational programs to control it, aiming to disrupt the prevalent understanding of disability in institutional life.

Part IV: Law and Social Space

This part focuses on Canadian policy and legal issues concerning impairment and disability. It reveals the complex political nature of disability, demonstrating how implicit and explicit definitions shape legislation and social spaces, subsequently influencing interactions between disabled and non-disabled people. It also considers how disabled individuals interpret and live with legal relations, potentially questioning conventional legal rights.

Part V: Education, Technology, and Work

This section examines the dynamic interplay of learning and work, revealing them as activities and social spaces governed by normative expectations. The central question is framed as: "What do we do when the unexpected show up?" (Michalko and Titchkosky, 2001). This leads to questioning why "normal" educational and work environments often fail to anticipate the participation of disabled people.

Part VI: Global Interconnections and Local Challenges

This final part explicitly addresses intersecting aspects of social difference, including race, class, gender, sexuality, and nation (Bell, 2006). It serves as an invitation to envision a future for disability and disability studies that is less oppressive. By critically examining what the field has yet to address, or has addressed inadequately, it encourages readers to explore these gaps and rethink the "normal" trajectories and moments of inclusion and exclusion within disability studies itself.

In essence, Rethinking Normalcy: A Disability Studies Reader questions normalcy across various social locations and interactions, whether it manifests as a demand in face-to-face encounters, as external social structures, or as embedded ways of knowing ourselves and the world. The book's core intention is to destabilize the demands of normalcy, enabling critical interrogation and eventual restructuring, thereby positioning disability as a genuine, creative aspect of social life and a vital arena for examining how we coexist.