Living our Limits

An Introduction to the Study of Disability

by Darla Schumm

Illustration by Terri Scott

What is disability? Who is disabled? What signifies a “normal” body? What does it mean to be part of a minority group deserving of rights and protections?

No simple answers exist to these or a host of related questions that arise when attempting to understand and define disability. Like the bones, sinews, muscles, flesh and blood that constitute embodied living, defining and understanding disability is messy and complex.

Disability cuts across race, class, gender, and national, ethnic or cultural distinctions. According to the UN Enable Factsheet on Persons with Disabilities, people with disabilities are the largest minority group, comprising 15 percent of the world’s population, or approximately one billion people. Moreover, the World Health Organization (WHO) notes that these numbers continue to increase as a result of medical advances and the aging process and population growth. Most of us will come into contact with disability at some point in our lives either through a friend, family member or personal experience. In fact, we’re all likely to experience some form of disability ourselves if we live long enough. The challenges and opportunities a blind person faces differ from those of a person who uses a wheelchair. There may be some shared general concerns regarding issues of accessibility and accommodation, but the specific details can vary widely. Even people with the same disability, such as blindness, have varying needs and challenges. Thus, we cannot talk about the disability experience but rather must talk about the varied and diverse disability experiences.

How We Got Here

Disability defies precise definition. Yet political, scholarly, religious and social efforts persist to legislate, theorize and theologize disability. As historians Paul Longmore and Lori Umanski note, the signature legislative effort on behalf of people with disabilities—the Americans with Disabilities Act (ADA) signed into law in 1990 by President George H. W. Bush—was the culmination of multiple legislative attempts to define and address the needs of people with disabilities. “In all, some fifty acts of Congress passed between 1968 and 1990 represented a major departure in lawmaking and policymaking regarding persons with disabilities.” Longmore and Umanski observe that these laws did not simply function to “help” people with disabilities; rather, they shifted the definition of what it meant to be disabled in America. A new generation of activists, lobbyists and people with disabilities promulgated legislative reform and asserted new levels of understanding about what it meant to live with a disability.

While disability activists instigated policy and legal reform, scholarly inquiry focused on disability-related issues. The first phase of these studies surfaced in the 1980s primarily in the social sciences. “It directed its efforts toward providing an analytical research base for the reform of public policies and professional practices, seeking ultimately to reconstruct society.”  The 1990s witnessed the second phase of disability studies when scholars in the humanities took up the mantle and began to scrutinize cultural, literary, religious and philosophical representations of disability. Today, a number of colleges and universities offer degrees or certificate programs in disability studies, but even more common is increasing cross-disciplinary intellectual reflection.

A critique of the social and cultural construction of categories such as “normal” and “abnormal” is at the core of much of disability studies scholarship. Literary critic and disability studies scholar Lennard J. Davis suggests that before we can fully understand how disability is constructed, we must first examine how normalcy has been constructed. He argues that the development of the field of statistics in the 1800s is when we first saw an assertion of a “norm” against which deviation from the norm can be measured. Davis notes that the central idea of statistics is that a population can be “normed.” Once a norm is established, the population can be divided into standard and substandard groups. It is a short leap for Davis to connect the construction of the norm with the development of an understanding of the disabled body: through statistical analysis, a bodily standard or norm is asserted, and bodies that do not conform to the norm are consequently “abnormal” or disabled. Disability studies scholars apply Davis’s analysis of the construction of normalcy and subsequently disability to their own fields. My own work, for example, explores how religious traditions assert norms and standards with respect to the body through religious teachings, texts, customs and rituals.

How We Think About Disability

As the field of disability studies gained traction, scholarly definitions and models for understanding disability surfaced.

1.The impairment model. This most basic model is based on the assumption that physical or cognitive impairments divide people into those who are able, whole, and normal, and those who are not. The impairment model views disability as a deficit that renders people with disabilities as less than or lacking in some way.

2.The medical model. The medical model also views disability as a deficit, but it also emphasizes the need for cure or restitution to health and wholeness. Disability is constructed as a progression of phases: identification of pathology or illness, implementation of protocol for treatment, and elimination of disease and disability, or cure. The medical model reinforces the dualism between able, whole, healthy, or normal bodies and disabled, fractured, unhealthy, or abnormal bodies. Disabilities studies scholar Rosemarie Garland-Thompson describes the medical model as: “… an inherent inferiority, pathology to cure, or undesirable trait to eliminate…” From the perspective of the medical model, eradication of disability is always
the goal.

3.The religious model. The religious model of disability is similar to the medical model in that it also constructs the experience of disability in terms of illness, treatment and cure. The difference, however, is that the religious model understands disability as the result of spiritual deficiency. In Christian terms spiritual deficiency is often articulated as sin, while in other traditions, such as Buddhism, it is explained through karma, or repayment for unmeritorious action in a previous life. The cure, then, for the religious model rests in the ability of the disabled person to somehow atone for his or her past sins or mistakes. Both the religious and the medical models frame disability as a problem or failure on the part of the individual who requires cure. The difficulty for those who adhere to these various models is how to live with and explain disability when cure is not possible or does not occur.

4.The social model. In contrast to the first three models, the social, or as some scholars call it, the minority, model of disability views disability as just one ofmany forms of human variation. From this perspective, disability is socially constructed, resulting more from social and cultural barriers, such as demeaning and discriminatory attitudes toward people with disabilities and the lack of reasonable accommodations, rather than from any physical or mental deficiency on the part of the individual. While the social model highlights discriminatory attitudes and reveals specific forms of injustice and oppression, some disability studies scholars warn that there is a danger in glossing over the all too real day-to-day challenges accompanying disability. Alexa Schriempf illustrates these dangers when she writes: “The social model, in focusing on the social construction of disability, has amputated disabled (especially women’s) bodies from their impairments and their biological and social needs.” Despite these important critiques of the social model, it remains the model of disability currently advocated by many scholars in the field.

5.The limits model. Christian theologian Deborah Beth Creamer articulates yet another model for thinking about embodiment, disability and ability that attends to theological concerns as well as issues raised by disability studies. Creamer argues that the dominant models of disability fail to recognize the rich diversity of disability experience. In response to the shortcomings of the medical and minority models, Creamer proposes an alternative approach, which she describes as the limits model.

This new model recognizes the prevalence of limits and rejects dualistic categories. The limits model highlights the fact that human limits need not be seen as negative or as an activity that cannot be done. Instead, limits are an important part of being human—a fact overlooked when we reflect on the human body as generic.

According to Creamer, we all share in the experience of limitation in one form or another. Through our experiences of limitation we understand what it means to be human. From the perspective of the limits model, disability is simply one form of embodied human limitation, no more or less normal or abnormal than any other form of human embodiment.

From Definition to Experience

As a blind woman, my body simultaneously defies disability definition and signifies disability experience. On the one hand, I live a normal life and do all of the things expected of a professional woman my age. On the other hand, I do these things in abnormal ways. Just when a friend or colleague thinks she has figured out what I can and cannot see, I surprise her by crashing into a large obstacle she thought I would see or by commenting on the beauty of a full moon she assumed I could not see. It is difficult for me—someone who lives with a disability—to explain or define disability. It is easy to understand, then, how flummoxed so-called able-bodied people feel when confronted with disability. As we struggle together to understand disability experience and work toward disability justice, an excellent place to begin is recognizing the challenges and opportunities inherent in all forms of human variation and limitation.

Sources

1.UN Enable. “Factsheet on Persons with Disabilities.” Accessed November 5th, 2015. http://www.un.org/disabilities/default.asp?id=18.

2.Ibid.

3.Paul K. Longmore and Lauri Umansky, ed., The New Disability History (New York: New York University Press, 2001), 10.

4.Ibid., 12.

5.For Davis’s full genealogy of “normalcy,” see: Lennard J. Davis, Enforcing Normalcy: Disability, Deafness, and the Body (New York: Verso, 1995).

6.Rosemarie Garland-Thomson, “Feminist Disability Studies: A Review Essay,” Signs: Journal of Women in Culture and Society 30, no. 2 (2005): 1558.

7.Jenny Morris, Pride Against Prejudice: Transforming Attitudes to Disability (Philadelphia: New Society, 1991).

8.Alexa Schriempf, “(Re) fusing the Amputated Body: An Interactionist Bridge for Feminism and Disability,” Hypatia 16, no. 4 (2001): 60.

9.Deborah Beth Creamer, Disability and Christian Theology: Embodied Limits and Constructive Possibilities (Oxford: Oxford University Press, 2009), 116.

 

 

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