Disability awareness has increased in recent decades, along with a growing academic field dedicated to it. Partly this is due to the concerns of a large aging baby boomer population. Disability advocacy groups are becoming increasingly vocal. Yet despite incremental advancements in affordances and civil also rights, the specter of normalcy persists. In many areas of life –– from employment and housing to education and medical care –– bias, discrimination, and uneasiness can negatively impact people with disabilities.
Even though no longer uniformly cast as outsiders, many with disabilities entering “ableist” society do so at a price. Social awkwardness or a reluctance to engage someone with a disability remain commonplace. This type of misunderstanding can lead to stereotyping, with the assumption that a person in a wheelchair wants or needs assistance. There can be a lot of confusion when it comes to certain conditions, such as when a speech difference is construed as a cognitive deficit. Furthermore, people with disabilities are sometimes accused of exploiting their disabilities for unfair advantages.
Let’s face it. Majorities tend to view the world from their own perspective, expecting others to conform. This impulse is particularly strong in the U.S., where citizens cling to their rugged individualism. In one of the most competitive countries in the world, failures are more likely to be attributed to individual shortcomings than to any systematic problem. The result has been a distorted view of variances of many types, physical and mental abilities prominent among them. In what often is termed the “medical model” of disability, impairments are seen as illnesses in need of treatment or “cure.” Because the model only focuses on functional differences, it can reduce the person to a diagnosis, while “constructing disability” as a problem.
In the disability community, activists and scholars argue that a condition only becomes a disability when it is conceptualized as one. In its place, they advocate a “social model” of disability, focusing on accommodations, universal design, and inclusive attitudes. People with disabilities can, with the appropriate affordances, found a company like Apple Computer (Steve Jobs), conduct an orchestra (Itzhak Perlman), become poet laureate (Maya Angelou), or President of the United States (Franklin Roosevelt).
All manner of traits can render someone less able in another person’s eyes. The most common issues that people think about are walking, hearing, and seeing issues, as well as certain intellectual differences. Yet impairments of any kind can be thought of as disabling. Consider illiteracy, old age, or poverty, for instance. If you are shy or anxious, or if you are self-centered, these can be forms of disabling traits. In much of American history, being a woman or a person of color made one less than fully capable. During the 1800s and among mental health circles, being lesbian, gay, or gender non-conforming was literally considered a disability. Another way to state this is that the social model shows how normative values become accepted as “common sense.” When this occurs, things that don’t fit in are negatively portrayed, erased, or surpassed by normative representations.
As one of America’s largest minorities, people with disabilities account for 15 percent of the population –– which translates to approximately 49 million people. Over a third of people with ongoing impairments are over 65 years of age. One in eight people has had a disability since birth. Half the children who are adopted have disabilities. Worldwide, there are 1 billion people with disabilities, most of whom live in developing countries. Given these numbers, a growing disability rights movement now works for such goals as architectural accessibility. Taking these statistics into account, the disability rights movement is now working to achieve such goals as architectural accessibility, employment fairness, safety, and protections against abuse and neglect. College and university “disability studies” programs have resulted in new courses of study, conferences, journals, and widely sold books such as Academic Ableism and The Disabilities Studies Reader.
Disability discrimination in the United States and abroad has a long history, partly due to misunderstandings and fear among the public, but also limits in medical care. Eugenics became popular in the late 1800s and continued to affect beliefs well into the twentieth century, as described above. Most people today are aware of the structural changes to public buildings resulting from the 1990 Americans with Disabilities Act (ADA). A lesser-known aspect of the ADA is the many protections it offers to promote the rights of the disabled in the workplace. As with environmental protection laws, a key sticking point with the ADA has been the economics of living up to its provisions, with corporations claiming it costs them too much and discourages companies from hiring applicants with disabilities. Lawsuits successfully challenged the ADA in the workplace, with litigants claiming that definitions of “disability” were overly broad in covering “physical or mental impairments substantially limiting a major life activity.” Opponents successfully persuaded the United States Supreme Court in 1999 that the Americans with Disabilities Act should apply only to specific job duties and not to the individual’s impairment. This reduced existing protections for many workers, such as those with diabetes. Later, the American with Disabilities Act Amendment Act (ADAAA) restored protections for impairments regardless of methods of amelioration.
Aside from matters of discrimination and civil rights, disability is an expensive matter for individuals, health insurers, and the government. Federal Disability Insurance payments now account for $144 billion (4 percent of the national budget) of Social Security Administration expenditures. Disability has therefore become a key concern of the National Institutes of Health (NIH), which spends $42 billion per year on biomedical research into aging, cancer, dementia, genetics, infectious disease, and prevention. Often, government funding is used to help private industry develop devices like bionic limbs, high-tech wheelchairs, and speech simulators, even though their cost is often too high for even the most insured to afford. But lumping disability in with the NIH’s list of diseases and conditions can also confuse the issue, as it often channels money into the commercial “cure”” industry rather than for accommodations that people with disabilities often lack.
Disability activist Eli Clare has described a “politics of cure” that inaccurately implies a return to a bodily state that many people with disabilities never had, which some may not even want, and few will ever reach. Clare argues that aspects of neoliberal capitalism emphasize efficiency, productivity, and success, which has led to a commodification of cure, the secondary effect of which diminishes and devalues anyone seen as less than a “flexible” able-bodied subject. Stress in the economy has only exacerbated the view that flexibility is a prerequisite to prospering. Owing to the adaptive capabilities of neoliberalism and the tendency for it to pressure certain groups to adapt, the effect is pernicious on people with disabilities. It is not uncommon for material and social pressures for cure to create further challenges to those with physical or mental illness, causing an implied denial of self for people with disabilities as they attempt to adapt, “fit in,” or minimize their conditions. As disability writer Rob McRuer has put it, “Compulsory able-bodiedness functions by covering over, with the appearance of choice, a system in which there actually is no choice.
Then there are the way people with bodily differences view themselves. Can issues of illness and disability be generalized into group identities without losing the unique experiences of individuals? Functional difference makes for an unwieldly community, since people’s conditions vary greatly, evoke differing attitudes, appear, and disappear, and also change over time. In the 2000s, some activists and scholars have attempted to understand disability through a concept called “crip theory.” The terms itself is a reuse of a derogatory expression, much like the LGBT community did with “queer” in the 1990s. This borrowing of a negative term is hardly accidental, since crip theory examines both the reality of disability and the ableist construction of it in language and society. As with its queer counterpart, crip theory departs from prior activism solely based on dignity and rights, though these topics remain important. Crip thinking differs in its direct assault on the dualistic divisions that separate people into categories like abled and disabled in the first place Often, these distinctions can be traced back to concepts of normality.
As a broader concept, crip implies the acceptance of all bodily variations. Whether it’s physical ability, fitness, skin color, size, or weight, human beings differ remarkably, with such differences rarely occurring in simple binary terms. During the past decade, disability awareness has entered a new phase, thanks in part to rising awareness, as noted by Lennard Davis. In the early years of the movement, attention focused on positive images and recognition (“Disability Pride,” “Deaf Power,” etc.). Later disability activism became more aware of the intersectional aspects of identities (which vary according to age, gender, ethnicity, and social class). However, Davis has asserted that even these advances retained the ideal of the autonomous, complete, and “normal” subject as its model. As Canguilhem had argued decades earlier, Davis said that normal is a minority category. Davis called for a “dismodern” way of thinking in which traditional (modern) notions of “self” are thrown away in favor of a partial, incomplete figure whose self-realization is not autonomy and independence, but dependency and interdependence. “This is a very different notion from subjectivity organized around wounded identity; rather all humans are seen as wounded. Wounds are not the result of oppression, but rather the other way around,” Davis wrote.
Increasingly, scholars agree that bodily frailty affects everyone. Yet most Americans either don’t recognize this or simply choose to ignore it. Writing recently in the New York Times, Rosemarie Garland-Thompson pondered this strange disconnect in public consciousness, attributing it to both intellectual and emotional difficulties. Because disability exists in so many forms and degrees, most people fail to see mobility impairments, hearing loss, learning differences, and chronic anxiety as a unified category. Nor do they consider that nearly everyone of advanced years requires some kind of accommodation. Once they do, it becomes clears that disability is everywhere and not merely the stuff of wheelchairs or service animals. “The fact is, most of us will move in and out of disability in our lifetimes, whether we do so though illness, an injury or merely the process of again,” Garland-Thomas wrote. Likewise, Jasbir Puar recently commented, “Illness and disability can be posited as the most common identity because we will all belong someday,” with David Mitchell suggesting that a view of disability “not as exception, but the basis upon which a decent and just social order is founded.” It should also be noted that disability is already a common circumstance among the working class and the poor.
What are the implications of this for update culture? More questions than answers, I think. As this chapter has discussed, the United States has body image problems driving many people to seek an improvement or change. From fantasized views of “normal” health and fitness to the stigmatization of those with illness or disability, the U.S. fails to appreciate bodily differences and the inevitable impairment that everyone faces. Such thinking likely is often rooted in the unconscious knowledge that everyone’s body will eventually fail, and media stoked fear of what that failure says about them. It’s also a function of America’s competitive individualism, which tends to personalize misfortunes. Such attitudes would deny the effects of structural inequality, intrenched discrimination, or medical conditions that are nobody’s fault. In addition, although people with illnesses or impairments are more likely to recognize human vulnerability and interdependence as dismodernism suggests, the relentless pressure for normative functioning remains a problem for everyone.