ACCESS, DISEASE, AND DISABILITY A DIALOGUE ON THE IMPORTANCE OF UNDERSTANDING “NORMAL”

ROWAN McCOLLUM

What does an accessible world look like? At first glance, perhaps it is an easy question to discuss. Defined, access seems straightforward. As a noun, access is defined as “the ability, right, or permission to approach, enter, speak with, or use; admittance.” In a data-driven world, with medical and technological advancements increasing at seemingly rapid paces with each coming year, our definitions of disease and disability are shifting, and subsequently, our definition of access changes alongside them. What becomes admissible as normal human existence, as disability, or as disease, deviates from past conventions in both the medical and public eye. These alterations at times come at the misfortune of individuals whose ailments bring about designations unwelcome in the public eye, and while an accessible world is one that understands, at present the lived experience of those labeled “ill” or “disabled” is detached from the view of these words socially and culturally. The world understands truly very little about the nuances of human ailment, and at times, we seem to almost separate scientific definition, social expectation, and lived experience.

With definitions ever-shifting, and social notions creating a difficult, yet unavoidable hurdle, how do people navigate an environment that doesn’t seem to be able to admit them? Unfortunately, it is difficult not to grasp at straws in answering this question. There are seemingly endless conflicting ideas and lines of thought and struggling to put together a coherent solution is nearly expected. Social awareness of access is strikingly non-existent, and those individuals that need aid in accessing their environments are looked down upon as “abnormal”, creating a frustrating scenario.

Perhaps it is useful to first observe where our social concept of normal heralds from. The notion itself was introduced to sociology by August Comte, who borrowed it from pathology and defined it as on one hand an “average and factual state” and on the other a desirable state. “From the beginning of the nineteenth century the concept of normality was used as a part of notion of progress and of the ideological consolidation of the middle classes as it seems to be able of imposing order on variations and to introduce the demarcation lines between the socially acceptable and the unacceptable” (Misztal 2002). A notion of progress, yet average at the same time? Conflicting, to say the least.

It is helpful to understand social conceptualizations of normal keeping the idea of a “desirable state” in mind, in order to frame an analysis of disease, disability, and access, as disease and disability are often viewed socially as “abnormal”. Indeed, even those individuals in need of additional resources to access their environments in a comfortable or enjoyable facet are looked upon as abnormal, or even undesirable, members of society. This makes the concept of normal a “specific cultural value judgement” (McGuire & Fritsch 2019). Keeping Comte’s initial definition of normal, and the tension it creates in constructing normal as a desirable state in mind, it is almost as if normal is viewed socially as the right way to be. Normal “keeps us in our places by helping us know how to be ourselves properly” (McGuire & Fritsch 2019). This lens, and the ideology it creates, however flawed, is the one which society often looks through in deciding upon acceptable modes of human existence.

This social conceptualization of normal is paramount in understanding how to rethink defining disease and creating access, and it finds itself nestled into not only colloquial discussion but in academic literature as well. Both the definitions of disability and disease are adversely affected by a flawed ideology surrounding normal as a concept.

“The definition of disability […] focuses not on the body but on the social; disability is something that a person possesses when dealing with other people or with physical spaces that are inaccessible” (Herndl 2005). In contrast, disease is often associated with the physical state of the body; that is, in medical terms, the disruption of the tedious balance of homeostasis that must be maintained to have a well-functioning organism. Both states of existence are often conceptualized unfavorably under the lens of normalcy, in that they differ from that of acceptable forms of being. Regarding disease, our understanding is evershifting and limited by the reach of our scientific knowledge base, and as a result, the definition itself is undermined slightly as a flawed concept of “normal” is bundled in with what is intended as objective analysis.

Unfortunately, it is difficult to delineate from current scientific definitions of disease, however tricky it may be to remove social conventions from academic contexts. “In medical discourse, the name of a disease refers to the sum of the abnormal phenomena displayed by a group of living organisms in association with a specified common characteristic or set of characteristics by which they differ from the norm of their species in such a way as to place them at a biological disadvantage” (Toon 1981). This definition fails to understand the various nuances within the contexts in which the term “disease” is applied; colloquial usage involving this definition creates an unfortunate split into the desirable and undesirable. “There is the dichotomy between disease and non-disease, in which the term implies that the state of the organism is in some way undesirable, and requires if possible, to be changed” (Toon 1981). This use of language undermines the individual, emphasizing normal as the “right way to be”. Extending beyond disease, this sense of abnormality as undesirable within medical literature makes its mark on sociocultural ideologies surrounding disability; individuals who are labeled as “disabled” often find these ideologies surrounding desirability manifest in their everyday social lives.

Keeping in mind that disability often presents itself in social interactions, social conceptualizations then dictate the lived experience of individuals regarded as disabled, and thus as a result, our distortion of “normal” plays an unfortunate role. For those that are disabled, it is their context that “is, or at least should be, also ours; if it isn’t it is because of barriers that ‘we’ have set up to exclude ‘them’” (Herndl 2005). However, we have established that there are implicit barriers set up through an underlying social bias towards normal as a desirable state in both academic literature and social interaction. How might our world look if these barriers were removed?

This question is one that is quite pertinent in the world of access intimacy, that is, the understanding of the needs of an individual, or “that elusive, hard to describe feeling when someone else “gets” your access needs” (Mingus 2017). Awareness regarding access intimacy can help to broaden the scope of social awareness, as an innate understanding of the needs of individuals is agreed upon, and as a result, some of the flawed logic surrounding the term normal is subverted. An environment that creates a setting of access intimacy is exemplified in Gallaudet University, an academic institution with a majority deaf or signing population. Gallaudet employs a distinct philosophy of design that is conducive to a visual medium of communication, while also serving as a largely “normal” (by our largely flawed definition) learning institution. Gallaudet not only serves to be more accessible for its deaf community members but also fosters a greater sense of social awareness in its residents. “That social awareness—not just for oneself but for the other—is a naturalized set of behaviors that come with the social work of sign” (Hendren 2020). At Gallaudet, access intimacy creates an environment where lack of hearing, viewed generally as an unfortunate abnormality, is in fact a quality contributing to a deeper form of social interaction. What has been viewed as a flaw, a nondesirable state, is conducive to desirable qualities. It seems that our definition of normal has some adjusting to do.

If we broaden our mindset and think more openly about what could be considered normative existence in society, we must also broaden our mindset about what is needed to construct an accessible world. Models such as Gallaudet University must be considered the staple, not the outlier. In continuation of this reasoning, our definition of disease and disability must be altered as well; we must aim to understand the nuances of defining disease and the ways in which a flawed “normal” creates a frustrating lived experience. Furthermore, these subtleties are intertwined, and it is not adequate to simply define disease as an ailment of the body, and disability as an ailment of the social, and separate the two items into vacuums through which to address. Definitions play a major role in not only social interaction and personal well-being, but also in funding and research opportunities/decisions; it is paramount to take caution in understanding them to broaden our mindsets academically, socially, and culturally, and create a new definition of an accessible world.

To answer our initial question, what does an accessible world really look like? An accessible world is not only one that understands the needs and difficulties of alternate ways of human existence, but also becomes a world that shifts what being “normal” truly is. An accessible world scrutinizes normalcy; it broadens the scope of social awareness and scientific inquiry to shape an understanding of being that not only analyzes, but inquires, and understands. In essence, an accessible world is nuanced; it understands the limitations that we place upon ourselves when we create concepts like normality, or stunted definitions of the words that bring power to our lives, and brings forth a newfound sense of awareness about what it means to be. An accessible world takes the broken logic of normalcy, the lack of social awareness around disability, and the troubling task of defining disease, and inserts a level of humanity that allows for recognition, realization, and most importantly, change.

Works Cited

McGuire, A., & Fritsch, K. (2019). Fashioning the ‘Normal’ Body. Power and Everyday Practices, 79-99.

Hendren, S. (2020) What Can a Body Do? How We Meet the Built World. Riverhead Books, 94-130.

Mingus, M. (2017). Access intimacy, interdependence and disability justice. Leaving evidence, 12.

Herndl, D. P. (2005). Disease versus disability: the medical humanities and disability studies. PMLA, 120(2), 593-598.

Misztal, B. A. (2002). Rethinking the concept of normality: The criticism of Comte’s theory of normal existence. Polish Sociological Review, 189–202.

Toon, P. D. (1981). Definingdisease’—classification must be distinguished from evaluation. Journal of medical ethics, 7(4), 197-201.