Nearsighted Normalcy: Evaluating What Frames Our Perspective on Normal Health and Illness

Annie Galloway is a second year undergraduate student at Grinnell College.

Most humans want to have full long lives in which they are able to do what they want. Illness interferes with this desire. The Golden Age of American medicine, which created the doctor-as-hero character, promoted the expansion of medical control and the idea that medicine could transform our bodies and lives. As a result, Americans pathologized behaviors, ugliness, and gender ambiguity [1]. Hero-doctors offered cures to aspects of the human existence that until this point had not been explicitly labeled as a health concern. Physicians administered steroids, with little regard to or knowledge of their abuse potential, referring to testosterone therapy as being like “sexual TNT” [2]. Cosmetic surgery, broadly defined as “surgery undertaken for reasons of appearance,” has facilitated the medicalization of cultural beauty standards [3]. Additionally, performing gender assignment surgeries of intersex individuals allowed physicians to construct the Western binary concept of gender and to “cure” those who did not fit this mold [4]. The medicalization of the human existence, which allowed physicians to help individuals meet the societal demands for normalcy, enforced the idea that normal illness is curable. This idea leaves out illnesses and conditions that are currently incurable, and thus chronic. For people in this category, defining illness must become more about understanding personal desires for functioning.

Although one’s health seems like a personal matter, the treatment of diseases and illnesses is extremely regulated by public policy. Governmental programs, international organizations, and physicians all have their own definitions for health and illness. These definitions serve as diagnostic and evaluative tools. The World Health Organization uses the International Classification of Functioning (ICF) as a basis for evaluating standards of health across different countries. The ICF looks at disability and health with regards to daily life functioning, participation restrictions, and activity limitations [5]. It uses an interval scale to quantify these functions.

Psychiatrists similarly look at health with a scalar system, just without the numbers. The Diagnostic and Statistical Manual of Mental Disorders-5 (DSM-V) is one reference guide they use. Disorders are presented with lists of symptoms that are graduated. For example, anxiety disorders can include a range of symptoms from irritability to severe panic attacks [6]. The challenges with both the ICF and the DSM-V is that someone with authority ends up making a subjective judgment. The final call is often black or white: healthy or not, in need of pharmaceuticals or not, in need of more therapy or not. The result is that when diseases exist on a spectrum, our society is less inclined to offer help to them. We do not know how to accommodate mild disorders. While it is easy to look at the chromosomes of a fetus and identify Down’s syndrome, diagnoses for autism spectrum disorders can be more prolonged and potentially subjective, depending on the severity. With the presence of individuals who are high functioning with autism, a political debate emerges on whether or not autism needs a cure. “Neurodiversity” becomes a concept that groups, like Autistic Self-Advocacy argue, needs to be accepted as a part of the human identity [7]. However, critics of this idea argue that more effort needs to be focused on a cure for autism because the term neurodiversity does not include those on the autism spectrum who cannot communicate or care for themselves [8]. The political side of understanding health becomes muddled when we become less able to declare whether someone is healthy or not.

The influence of politics does not stop with definitions. Economic theory also influences our social perceptions of health. Neoliberalism, which first emerged as an economic theory under the Reagan administration, promotes privatization, free trade, and deregulation [9]. It emphasizes the power of autonomous choice to the extent that it permeates to our social understanding of health. Neoliberalism evolved to be a moral theory that leads to a lack of acceptance for illnesses deemed “preventable,” like obesity [10]. People see obesity as the result of poor decision making, rather than the much more complex health concern that it really is [11]. As a result, there is limited social acceptance of individuals with obesity because they may be written off as causing their own demise. The societal acceptance of homosexuality also reflects the influence of a neoliberalist mindset. As people began to understand that one’s sexuality is not a choice, rather an innate quality, there has been more acceptance of homosexuality. A positive trend of acceptance appears to be correlated with the notion that people cannot change their condition. Neoliberalism, and the concept of denying support for “avoidable” illnesses, has defined normal illness as the unavoidable.

The popular aesthetic frame of health, specifically consumer and popular culture, has constructed the definition of health for most of American history. During the mid-nineteenth century, pseudo-medical authorities dominated popular science and media as they defined what normal looked like and offered solutions for those who were considered abnormal. Today, the New York Times science section, TEDTalks, and other media, demonstrate normal health and instruct individuals on how to improve their lives. Drug advertisements, which initially constructed symptoms for neurasthenia in the 1800’s, now idealize medication as they tell us that these drugs will help us exist in a romanticized state of normalcy. While these advertisements and popular media references tell us what health should look or feel like, it is important to note who is often excluded in popular culture. With respect to health, this includes individuals with physical and mental disabilities and along with those with mental health disorders. When we see health portrayed publicly, we often see the same people [12]. By ignoring the existences of those not portrayed in social media, popular culture tells us that to be healthy we need to be beautiful, able-bodied and active, and always happy.

The idea of being normal is not limited to the health care field. In math and science classes, students are often taught about a normal population curve. This bell-shaped curve shows that most people fall in the middle, but the rest reside on either end. Even in a normal distribution, people sit on the extremes. When we try to apply this notion to our health, we should expect the same thing: a range. The challenge is that our medicalization of health has pushed us to seek solutions for anything that makes us outliers. These outliers are not determined by mathematical formula; rather, they are defined by the health, policy, and popular aesthetic frames of society.

So what have these frames of health constituted as normal? Normal illness seems to exist as a diagnosable, curable, or unavoidable ailment. Normal health exists as happy, beautiful, and physically active. If our illnesses and health do not fit these notions, people are left out of mainstream society and occupy a marginalized space in both medicine and American culture. Who are these people? Anyone not seeking a cure for their “illness” or “disability.” In an exploration of deaf culture Edward Dolnick writes, “Deafness is still seen as a dreadful fate” [13]. He points out that deafness is in fact cultural, and this view rejects the medicalized assumption that everyone wants a cure [14]. The challenge is the understanding that not everyone wants to be “cured” of deafness. Individuals with spectrum disorders are also often left out of the American understanding of normalcy, with respect to how much help they might need. Mental health disorders, which are highly subjective in experience, present enormous challenges to treatment: whether or not it be mandatory, and to the extent to which it is funded. “Choice” illnesses such as obesity, and even lung cancer, also garner less social support, leaving sufferers with limited positive representation. Conflicting views on what is normal, how much society should attempt to gain normalcy for its members, how much individuals themselves want to achieve this definition of normal, and how much agency individuals have over this want, confound medical practice and policy.

Miscommunication and misunderstanding seem to lie at the roots of the problem with medical normalcy in America. The various frames I have discussed have shaped how we see those who are different and our resulting assumptions about them. Health is an integral part of human existence, but that does not mean that health looks the same in all of us. This is important to remember when we think about medical treatment. Not everyone needs or wants the same solution to the same condition. Politically, this gets confusing when we consider to whom we should devote aid and funding. The various social and political frames through which we understand health make it a social issue, instead of a personal one. We cannot disregard their importance. Instead, we should recognize their subjective nature and work to understand how public policy and medical practice can work together to let people live their lives with peace and enjoyment, getting the kind of heath care that individuals both want and need.

End Notes

[1] Elizabeth Haiken, Venus Envy: A History of Cosmetic Surgery (Baltimore: The Johns Hopkins University Press, 1997), 7; Christopher Lane, Shyness: How Normal Behavior Became a Sickness (New Haven: Yale University Press, 2007), 13; Elizabeth Reis, Bodies in Doubt: An American History of Intersex (Baltimore: Johns Hopkins University Press, 2009), 21.

[2] William N. Taylor, Macho Medicine: A History of the Anabolic Steroid Epidemic (Jefferson: McFarland & Company, 1991), 15.

[3] Elizabeth Haiken, Venus Envy: A History of Cosmetic Surgery (Baltimore: The Johns Hopkins University Press, 1997), 6; Elizabeth Haiken, Venus Envy: A History of Cosmetic Surgery (Baltimore: The Johns Hopkins University Press, 1997), 177.

[4] Elizabeth Reis, Bodies in Doubt: An American History of Intersex (Baltimore: Johns Hopkins University Press, 2009), 10; Katrina A. Karkazis, Fixing Sex: Intersex, Medical Authority, and Lived Experience (Durham: Duke University Press, 2008), 32.

[5] “ICF Checklist: Version 2.1a, Clinician Form.” WHO.int. Last modified September, 2003. url: http://www.who.int/classifications/icf/icfchecklist.pdf?ua=1

[6] American Psychiatric Association, Diagnostic and Statistical Manual of Mental Disorders: DSM-5 (Washington, D.C: American Psychiatric Association, 2013), 189-233.

[7] Amy Harmon, “Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism,” The New York Times, March 27, 2010. url: http://nyti.ms/1HrQ85S

[8] Lennard J. Davis, The End of Normal: Identity in a Biocultural Era (Ann Arbor: The University of Michigan Press, 2013), 4.

[9] Samantha Kwan and Jennifer Graves, Framing Fat: Competing Constructions in Contemporary Culture (New Jersey: Rutgers University Press, 2013), 6.

[10] Ibid.

[11] Ibid.

[12] Lennard J. Davis, The End of Normal: Identity in a Biocultural Era (Ann Arbor: The University of Michigan Press, 2013), 9.

[13] Edward Dolnick, “Deafness as Culture,” The Atlantic, September, 1993, 37.

[14] Ibid.