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Disability

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Disability symbols

A disability is any condition that makes it more difficult for a person to do certain activities or effectively interact with the world around them (socially or materially). These conditions, or impairments, may be cognitive, developmental, intellectual, mental, physical, sensory, or a combination of multiple factors. Impairments causing disability may be present from birth or can be acquired during a person's lifetime. Often, disabled people are "unnecessarily isolated and excluded from full participation in society."[1] As a result of impairments, people with disabilities can experience disablement from birth, or may be labeled as disabled during their lifetime.

The United Nations Convention on the Rights of Persons with Disabilities defines disability as:

long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder [a person's] full and effective participation in society on an equal basis with others.[2]

Disability is a contested concept, with shifting meanings in different communities.[3] It has been referred to as an "embodied difference,"[4] but the term may also refer to physical or mental attributes that some institutions, particularly medicine, view as needing to be fixed (the medical model). It may also refer to limitations imposed on people by the constraints of an ableist society (the social model); or the term may serve to refer to the identity of disabled people. Physiological functional capacity (PFC) is a measure of an individual's performance level that gauges one's ability to perform the physical tasks of daily life and the ease with which these tasks are performed. PFC declines with age and may result to frailty, cognitive disorders, or physical disorders, all of which may lead to labeling individuals as disabled.[5] According to the World Report on Disability, 15% of the world's population or 1 billion people are affected by disability.[6] A disability may be readily visible, or invisible in nature.

Terminology

Handicap
The term handicap derives from the medieval game Hand-in-cap, in which two players trade possessions, and a third, neutral person judges the difference of value between the possessions.[7] The concept of a neutral person evening up the odds was extended to handicap racing in the mid-18th century, where horses carry different weights based on the umpire's estimation of what would make them run equally. In the early 20th century the word gained the additional meaning of describing a disability, in the sense that a person with a handicap was carrying a heavier burden than normal.[8] This concept, then, adds to the conception of disability as a burden, or individual problem, rather than a societal problem.[9]
Accessibility
Accessibility is the degree to which a product, service or environment is available for use to the people that need it. People with certain types of disabilities struggle to get equal access to some things in society. For example, a blind person cannot read printed ballot papers, and therefore does not have access to voting that requires paper ballots.
Accommodation
A change that improves access. For example, if voting ballots are available in braille or on a text-to-speech machine, or if another person reads the ballot to the blind person and recorded the choices, then the blind person would have access to voting.

Causes

There are many different causes of disability that often affect basic activities of daily living, such as eating, dressing, transferring, and maintaining personal hygiene; or advanced activities of daily living such as shopping, food preparation, driving, or working. However, it is important to note that causes of disability are usually determined by a person's capability to perform the activities of daily life. As Marta Russell and Ravi Malhotra argue, "The 'medicalization' of disablement and the tools of classification clearly played an important role in establishing divisions between the 'disabled' and the 'able-bodied.'"[10] This positions disability as a problem to be solved via medical intervention, which hinders our understanding about what disability can mean.

For the purposes of the Americans with Disabilities Act of 1990, the US Equal Employment Opportunity Commission regulations provide a list of conditions that should easily be concluded to be disabilities: deafness, blindness, an intellectual disability, partially or completely missing limbs or mobility impairments requiring the use of a wheelchair, autism, cancer, cerebral palsy, diabetes, epilepsy, HIV/AIDS, multiple sclerosis, muscular dystrophy, major depressive disorder, bipolar disorder, post-traumatic stress disorder, obsessive compulsive disorder, and schizophrenia.[11]

This is not an exhaustive list and many injuries and medical problems cause disability. Some causes of disability, such as injuries, may resolve over time and are considered temporary disabilities. An acquired disability is the result of impairments that occur suddenly or chronically during the lifespan, as opposed to being born with the impairment. Invisible disabilities may not be obviously noticeable.

Invisible disability

Invisible disabilities, also known as Hidden Disabilities or Non-visible Disabilities (NVD), are disabilities that are not immediately apparent, or seeable . They are often chronic illnesses and conditions that significantly impair normal activities of daily living. Invisible disabilities can hinder a person's efforts to go to school, work, socialize, and more. Some examples of invisible disabilities include intellectual disabilities, autism spectrum disorder, attention deficit hyperactivity disorder, mental disorders, asthma, epilepsy, allergies, migraines, arthritis, and chronic fatigue syndrome.[12]

Employment discrimination is reported to play a significant part in the high rate of unemployment among those with a diagnosis of mental illness.[13]

Episodic disability

People with health conditions such as arthritis, bi-polar disorder, HIV, or multiple sclerosis have periods of wellness between episodes of illness. During the illness episodes people's ability to perform normal tasks, such as work, can be intermittent.[14]

History

Expected-years-of-living-with-disability-or-disease-burden.png

Contemporary understandings of disability derive from concepts that arose during the scientific Enlightenment in the west; prior to the Enlightenment, physical differences were viewed through a different lens.[15]

There is evidence of humans during prehistory that looked after people with disabilities. At the Windover Archeological Site, one of the skeletons that was found was a male about 15 years old, who had spina bifida. The condition meant that the boy, probably paralyzed below the waist, was taken care of in a hunter-gatherer community.[16][17]

Provisions that enabled individuals with impaired mobility to access temples and healing sanctuaries were made in ancient Greece.[18] Specifically, by 370 B.C., at the most important healing sanctuary in the wider area, the Sanctuary of Asclepius at Epidaurus, there were at least 11 permanent stone ramps that provided access to mobility-impaired visitors to nine different structures; evidence that people with disabilities were acknowledged and cared for, at least partly, in ancient Greece.[19]

During the Middle Ages, madness and other conditions were thought to be caused by demons. They were also thought to be part of the natural order, especially during and in the fallout of the Plague, which wrought impairments throughout the general population.[20] In the early modern period there was a shift to seeking biological causes for physical and mental differences, as well as heightened interest in demarcating categories: for example, Ambroise Pare, in the sixteenth century, wrote of "monsters", "prodigies", and "the maimed".[21] The European Enlightenment's emphases on knowledge derived from reason and on the value of natural science to human progress helped spawn the birth of institutions and associated knowledge systems that observed and categorized human beings; among these, the ones significant to the development of today's concepts of disability were asylums, clinics, and prisons.[20]

Contemporary concepts of disability are rooted in eighteenth- and nineteenth-century developments. Foremost among these was the development of clinical medical discourse, which made the human body visible as a thing to be manipulated, studied, and transformed. These worked in tandem with scientific discourses that sought to classify and categorize and, in so doing, became methods of normalization.[22]

The concept of the "norm" developed in this time period, and is signaled in the work of the Belgian statistician, sociologist, mathematician, and astronomer Adolphe Quetelet, who wrote in the 1830s of l'homme moyen – the average man. Quetelet postulated that one could take the sum of all people's attributes in a given population (such as their height or weight) and find their average and that this figure should serve as a statistical norm toward which all should aspire.

This idea of the statistical norm threads through the rapid take-up of statistics gathering by Britain, the United States, and the Western European states during this time period, and it is tied to the rise of eugenics. Disability, as well as other concepts including: abnormal, non-normal, and normalcy came from this.[23] The circulation of these concepts is evident in the popularity of the freak show, where showmen profited from exhibiting people who deviated from those norms.[24]

With the rise of eugenics in the latter part of the nineteenth century, such deviations were viewed as dangerous to the health of entire populations. With disability viewed as part of a person's biological make-up and thus their genetic inheritance, scientists turned their attention to notions of weeding such as "deviations" out of the gene pool. Various metrics for assessing a person's genetic fitness, which was then used to deport, sterilize, or institutionalize those deemed unfit. At the end of the Second World War, with the example of Nazi eugenics, eugenics faded from public discourse, and increasingly disability cohered into a set of attributes that medicine could attend to – whether through augmentation, rehabilitation, or treatment. In both contemporary and modern history, disability was often viewed as a by-product of incest between first-degree relatives or second-degree relatives.[25]

A short government advisory animation on the social model of disability

Disability scholars have also pointed to the Industrial Revolution, along with the economic shift from feudalism to capitalism, as prominent historical moments in the understanding of disability. Although there was a certain amount of religious superstition surrounding disability during the Middle Ages, disabled people were still able to play significant roles in the rural production based economy, allowing them to make genuine contributions to daily economic life. The Industrial Revolution and the advent of capitalism made it so that people were no longer tied to the land and were then forced to find work that would pay a wage in order to survive. The wage system, in combination with industrialized production, transformed the way bodies were viewed as people were increasingly valued for their ability to produce like machines. Capitalism and the industrial revolution effectively created a new class of "disabled" people who could not conform to the standard worker's body or level of work power. As a result, disabled people came to be regarded as a problem, to be solved or erased.[26]

In the early 1970s, disability activists began to challenge how society treated disabled people and the medical approach to disability. Due to this work, physical barriers to access were identified. These conditions functionally disabled them, and what is now known as the social model of disability emerged. Coined by Mike Oliver in 1983, this phrase distinguishes between the medical model of disability – under which an impairment needs to be fixed – and the social model of disability – under which the society that limits a person needs to be fixed.[27]

Disability activism

Disability activism itself has led to the revision of appropriate language, when discussing disability and disabled people. For example, the medical classification of ‘retarded’ has since been disregarded, due to its negative implications. Moreover, disability activism has also led to pejorative language being reclaimed by disabled people. Mairs (1986) [28] explained how disabled people may choose to self-describe themselves as a ‘cripple’. This may appear surprising that they are using stereotypically negative language associated with disability, to describe themselves; however the purpose is to reclaim the ‘disabled identity’ from medical professionals, and realign it with the preferred language of disabled people. The reclamation of language demonstrated above positions itself within the social model, as it highlights how as a society we construct concepts and perceptions of disability.

Sociology

crutches, braces, photographs, and other exhibits
Museum of disABILITY History, Buffalo, New York

People-first language

People-first language is one way to talk about disability which some people prefer. Using people-first language is said to put the person before the disability. Those individuals who prefer people-first language would prefer to be called, "a person with a disability". This style is reflected in major legislation on disability rights, including the Americans with Disabilities Act and the UN Convention on the Rights of Persons with Disabilities.

"Cerebral Palsy: A Guide for Care" at the University of Delaware describes people-first language:[29]

The American Psychological Association style guide states that, when identifying a person with a disability, the person's name or pronoun should come first, and descriptions of the disability should be used so that the disability is identified, but is not modifying the person. Acceptable examples included "a woman with Down syndrome" or "a man who has schizophrenia". It also states that a person's adaptive equipment should be described functionally as something that assists a person, not as something that limits a person, for example, "a woman who uses a wheelchair" rather than "a woman in/confined to a wheelchair".

People-first terminology is used in the UK in the form "people with impairments" (such as "people with visual impairments"). However, in the UK, identity-first language is generally preferred over people-first language.

The use of people-first terminology has given rise to the use of the acronym PWD to refer to person(s) (or people) with disabilities (or disability).[30][31][32] However other individuals and groups prefer identity-first language to emphasize how a disability can impact people's identities. Which style of language used varies between different countries, groups and individuals.

Identity-first language

Identity-first language describes the person as "disabled". Some people prefer this and argue that this fits the social model of disability better than people-first language, as it emphasizes that the person is disabled not by their body, but by a world that does not accommodate them.[33]

This is especially true in the UK, where it is argued under the social model that while someone's impairment (for example, having a spinal cord injury) is an individual property, "disability" is something created by external societal factors such as a lack of accessibility.[34] This distinction between the individual property of impairment and the social property of disability is central to the social model. The term "disabled people" as a political construction is also widely used by international organizations of disabled people, such as Disabled Peoples' International.

Using the identity-first language also parallels how people talk about other aspects of identity and diversity. For example:[35]

In the autism community, many self-advocates and their allies prefer terminology such as 'Autistic,' 'Autistic person,' or 'Autistic individual' because we understand autism as an inherent part of an individual's identity – the same way one refers to 'Muslims,' 'African-Americans,' 'Lesbian/Gay/Bisexual/Transgender/Queer,' 'Chinese,' 'gifted,' 'athletic,' or 'Jewish.'

Similarly, Deaf communities in the U.S. reject people-first language in favor of identity-first language.[36]

In 2021, the US Association on Higher Education and Disability (AHEAD) announced their decision to use identity-first language in their materials, explaining: "Identity-first language challenges negative connotations by claiming disability directly. Identity-first language references the variety that exists in how our bodies and brains work with a myriad of conditions that exist, and the role of inaccessible or oppressive systems, structures, or environments in making someone disabled."[37]

Autism acceptance symbol; an infinity symbol that is rainbow colored.
The rainbow-colored infinity symbol represents the diversity of the autism spectrum as well as the greater neurodiversity movement.[38]

Aging

To a certain degree, physical impairments and changing mental states are almost ubiquitously experienced by people as they age. Aging populations are often stigmatized for having a high prevalence of disability. Kathleen Woodward, writing in Key Words for Disability Studies, explains the phenomenon as follows:

Aging is invoked rhetorically – at times ominously – as a pressing reason why disability should be of crucial interest to all of us (we are all getting older, we will all be disabled eventually), thereby inadvertently reinforcing the damaging and dominant stereotype of aging as solely an experience of decline and deterioration. But little attention has been given to the imbrication of aging and disability.[39]

In Feminist, Queer, Crip, Alison Kafer mentions aging and the anxiety associated with it. According to Kafer, this anxiety stems from ideas of normalcy. She says:

Anxiety about aging, for example, can be seen as a symptom of compulsory able-bodiedness/able-mindedness, as can attempts to "treat" children who are slightly shorter than average with growth hormones; in neither case are the people involved necessarily disabled, but they are certainly affected by cultural ideals of normalcy and ideal form and function.[40]

Employment

Studies have illustrated a correlation between disability and poverty. Notably, jobs offered to disabled people are scarce. Marta Russell notes that "[a] primary basis for oppression of disabled persons (those who could work with accommodations) is their exclusion from exploitation as wage laborers."[41]

Intellectual Disability

Many countries have programs which aid intellectually disabled (ID) people to acquire skills needed in the workforce.[42] Such programs include sheltered workshops and adult day care programs. Sheltered programs consist of daytime activities such as gardening, manufacturing, and assembling. These activities facilitate routine-oriented tasks that in turn allow ID people to gain experience before entering the workforce. Similarly, adult day care programs also include day time activities. However, these activities are based in an educational environment where ID people are able to engage in educational, physical, and communication-based tasks which helps facilitate communication, memory, and general living skills. In addition, adult day care programs arranged community activities by scheduling field trips to public places (e.g. zoos, and movie theaters). Despite both programs providing essential skills for intellectually disabled people prior to entering the workforce, researchers have found that ID people prefer to be involved with community-integrated employment.[42] Community-integrated employment opportunities are offered to ID people at minimum or higher wages, in a variety of occupations ranging from customer service, clerical, janitorial, hospitality and manufacturing positions. ID employees work alongside employees without disabilities who are able to assist them with training. All three options allow intellectually disabled people to develop and exercise social skills that are vital to everyday life. However, it is not guaranteed that ID employees receive the same treatment as employees without ID; according to Lindstrom et al., community-integrated employees are less likely to receive raises, and only 26% are able to retain full-time status.[43]

Finding a stable workforce poses additional challenges. A study published in the Journal of Applied Research in Intellectual Disability indicated that although finding a job may be difficult, stabilizing a job is even harder.[44] Chadsey-Rusch proposed that securing employment for ID people requires adequate production skills and effective social skills.[44] Other underlying factors for job loss include structural factors and worker-workplace integration. As stated by Kilsby, limited structural factors can affect a multitude of factors in a job, such as a restricted number of hours an ID person is allowed to work. This in return, according to Fabian et al., leads to a lack of opportunity to develop relationships with coworkers or to better integrate within the workplace. Nevertheless, those who are unable to stabilize a job often are left discouraged. According to the same study conducted by JARID, many who had participated found that they had made smaller incomes when compared to their co-workers, had an excess of time throughout their days, because they did not have work. They also had feelings of hopelessness and failure. According to the U.S. National Organization on Disability, not only do ID people face constant discouragement, but many live below the poverty line, because they are unable to find or stabilize employment and because of employee restricting factors placed on ID workers.[43] This renders ID people unable to provide for themselves, including basic necessities such as food, medical care, transportation, and housing.

Poverty

The poverty rate for working-age people with disabilities is nearly two and a half times higher than that for people without disabilities. Disability and poverty may form a vicious circle, in which physical barriers and stigma of disability make it more difficult to get income, which in turn diminishes access to health care and other necessities for a healthy life.[45] In societies without state funded health and social services, living with a disability could require spending on medication and frequent health care visits, in-home personal assistance, and adaptive devices and clothing, along with the usual costs of living. The World report on disability indicates that half of all disabled people cannot afford health care, compared to a third of abled people.[46] In countries without public services for adults with disabilities, their families may be impoverished.[47]

Disasters

There is limited research knowledge, but many anecdotal reports, on what happens when disasters impact disabled people.[48][49] Individuals with disabilities are greatly affected by disasters.[48][50] Those with physical disabilities can be at risk when evacuating if assistance is not available. Individuals with cognitive impairments may struggle with understanding instructions that must be followed in the event a disaster occurs.[50][51][52] All of these factors can increase the degree of variation of risk in disaster situations with disabled individuals.[53]

Research studies have consistently found discrimination against individuals with disabilities during all phases of a disaster cycle.[48] The most common limitation is that people cannot physically access buildings or transportation, as well as access disaster-related services.[48] The exclusion of these individuals is caused in part by the lack of disability-related training provided to emergency planners and disaster relief personnel.[54]

Theory

The International Classification of Functioning, Disability and Health (ICF), produced by the World Health Organization, distinguishes between body functions (physiological or psychological, such as vision) and body structures (anatomical parts, such as the eye and related structures). Impairment in bodily structure or function is defined as involving an anomaly, defect, loss or other significant deviation from certain generally accepted population standards, which may fluctuate over time. Activity is defined as the execution of a task or action. The ICF lists nine broad domains of functioning which can be affected:

  • Learning and applying knowledge
  • General tasks and demands
  • Communication
  • Basic physical mobility, Domestic life, and Self-care (for example, activities of daily living)
  • Interpersonal interactions and relationships
  • Community, social and civic life, including employment
  • Other major life areas

In concert with disability scholars, the introduction to the ICF states that a variety of conceptual models have been proposed to understand and explain disability and functioning, which it seeks to integrate. These models include the following:

Medical model

The medical model views disability as a problem of the person, directly caused by disease, trauma, or other health conditions which therefore requires sustained medical care in the form of individual treatment by professionals. In the medical model, management of the disability is aimed at a "cure", or the individual's adjustment and behavioral change that would lead to an "almost-cure" or effective cure. The individual, in this case, must overcome their disability by medical care. In the medical model, medical care is viewed as the main issue, and at the political level, the principal response is that of modifying or reforming healthcare policy.[55][56]

Social model

The social model of disability sees "disability" as a socially created problem and a matter of the full integration of individuals into society. In this model, disability is not an attribute of an individual, but rather a complex collection of conditions, created by the social environment. The management of the problem requires social action and it is the collective responsibility of society to create a society in which limitations for disabled people are minimal. Disability is both cultural and ideological in creation. According to the social model, equal access for someone with an impairment/disability is a human rights concern.[57][56] The social model of disability has come under criticism. While recognizing the importance played by the social model in stressing the responsibility of society, scholars, including Tom Shakespeare, point out the limits of the model and urge the need for a new model that will overcome the "medical vs. social" dichotomy.[58] The limitations of this model mean that often the vital services and information persons with disabilities face are simply not available, often due to limited economic returns in supporting them.[59]

Some say medical humanities is a fruitful field where the gap between the medical and the social model of disability might be bridged.[60]

Social construction

The social construction of disability is the idea that disability is constructed by social expectations and institutions rather than biological differences. Highlighting the ways society and institutions construct disability is one of the main focuses of this idea.[61] In the same way that race and gender are not biologically fixed, neither is disability.

Around the early 1970s, sociologists, notably Eliot Friedson, began to argue that labeling theory and social deviance could be applied to disability studies. This led to the creation of the social construction of disability theory. The social construction of disability is the idea that disability is constructed as the social response to a deviance from the norm. The medical industry is the creator of the ill and disabled social role. Medical professionals and institutions, who wield expertise over health, have the ability to define health and physical and mental norms. When an individual has a feature that creates an impairment, restriction, or limitation from reaching the social definition of health, the individual is labeled as disabled. Under this idea, disability is not defined by the physical features of the body but by a deviance from the social convention of health.[62]

The social construction of disability would argue that the medical model of disability's view that a disability is an impairment, restriction, or limitation is wrong. Instead what is seen as a disability is just a difference in the individual from what is considered "normal" in society.[63]

Other models

  • The political/relational model is an alternative to and critical engagement with both the social and medical models. This analytic posed by Alison Kafer shows not only how the "problem" of disability "is located in inaccessible buildings, discriminatory attitudes, and ideological systems that attribute normalcy and deviance to particular minds and bodies" but also how mind and bodily impairments can still have disabling effects. Furthermore, the political/relational model frames the medicalization of disabled folks as political in nature given it should always be interrogated.[64]
  • The spectrum model refers to the range of audibility, sensibility, and visibility under which people function. The model asserts that disability does not necessarily mean a reduced spectrum of operations. Rather, disability is often defined according to thresholds set on a continuum of disability.[65]
  • The moral model refers to the attitude that people are morally responsible for their own disability.[66] For example, disability may be seen as a result of bad actions of parents if congenital, or as a result of practicing witchcraft if not.[67] Echoes of this can be seen in the doctrine of karma in Indian religions. It also includes notions that a disability gives a person "special abilities to perceive, reflect, transcend, be spiritual".[68]
  • The expert/professional model has provided a traditional response to disability issues and can be seen as an offshoot of the medical model. Within its framework, professionals follow a process of identifying the impairment and its limitations (using the medical model), and taking the necessary action to improve the position of the disabled person. This has tended to produce a system in which an authoritarian, over-active service provider prescribes and acts for a passive client.[69]
  • The tragedy/charity model depicts disabled people as victims of circumstance who are deserving of pity. This, along with the medical model, are the models most used by non-disabled people to define and explain disability.[70]
  • The legitimacy model views disability as a value-based determination about which explanations for the atypical are legitimate for membership in the disability category. This viewpoint allows for multiple explanations and models to be considered as purposive and viable.[71]
  • The social adapted model states although a person's disability poses some limitations in an able-bodied society, often the surrounding society and environment are more limiting than the disability itself.[72]
  • The economic model defines disability in terms of reduced ability to work, the related loss of productivity and economic effects on the individual, employer and society in general.[73]
  • The empowering model (also, customer model) allows for the person with a disability and his/her family to decide the course of his/her treatment. This turns the professional into a service provider whose role is to offer guidance and carry out the client's decisions. This model "empowers" the individual to pursue his/her own goals.[72]
  • The market model of disability is minority rights and consumerist model of disability that recognizing disabled people and their stakeholders as representing a large group of consumers, employees, and voters. This model looks to personal identity to define disability and empowers people to chart their own destiny in everyday life, with a particular focus on economic empowerment. By this model, based on US Census data, there are 1.2 billion people in the world who consider themselves to have a disability. "This model states that due to the size of the demographic, companies and governments will serve the desires, pushed by demand as the message becomes prevalent in the cultural mainstream."[56]
  • The consumer model of disability is based upon the "rights-based" model and claims that disabled people should have equal rights and access to products, goods, and services offered by businesses. The consumer model extends the rights-based model by proposing that businesses, not only accommodate customers with disabilities under the requirements of legislation but that businesses actively seek, market to, welcome and fully engage disabled people in all aspects of business service activities. The model suggests that all business operations, for example, websites, policies, and procedures, mission statements, emergency plans, programs, and services, should integrate access and inclusion practices. Furthermore, these access and inclusion practices should be based on established customer service access and inclusion standards that embrace and support the active engagement of people of all abilities in business offerings.[74] In this regard, specialized products and specialized services become important, such as auxiliary means, prostheses, special foods, domestic help, and assisted living.[75]
  • Different theories revolve around prejudice, stereotyping, discrimination, and stigma related to disability. One of the more popular ones, as put by Weiner, Perry, and Magnusson's (1988) work with attribution theory, physical stigmas are perceived as to be uncontrollable and elicit pity and desire to help, whereas, mental-behavioral stigmas are considered to be controllable and therefore elicit anger and desire to neglect the individuals with disabilities.[76]
  • The 'just world hypothesis' talks about how a person is viewed as deserving the disability. And because it is the fault of that person, an observer does not feel obligated to feel bad for him or to help him.[77]

Identity

In contexts where their differences are visible, persons with disabilities often face stigma. People frequently react to disabled presence with fear, pity, patronization, intrusive gazes, revulsion, or disregard. These reactions can, and often do, exclude persons with disabilities from accessing social spaces along with the benefits and resources these spaces provide.[78] Disabled writer/researcher Jenny Morris describes how stigma functions to marginalize persons with disabilities:[79]

Going out in public so often takes courage. How many of us find that we can't dredge up the strength to do it day after day, week after week, year after year, a lifetime of rejection and revulsion? It is not only physical limitations that restrict us to our homes and those whom we know. It is the knowledge that each entry into the public world will be dominated by stares, by condescension, by pity, and by hostility.

Additionally, facing stigma can cause harm to the psycho-emotional well-being of the person being stigmatized. One of the ways in which the psycho-emotional health of persons with disabilities is adversely affected is through the internalization of the oppression they experience, which can lead to feeling that they are weak, crazy, worthless or any number of other negative attributes that may be associated with their conditions. Internalization of oppression damages the self-esteem of the person affected and shapes their behaviors in ways that are compliant with nondisabled dominance.[78] Ableist ideas are frequently internalized when disabled people are pressured by the people and institutions around them to hide and downplay their disabled difference, or, "pass". According to writer Simi Linton, the act of passing takes a deep emotional toll by causing disabled individuals to experience loss of community, anxiety and self-doubt.[80] The media play a significant role in creating and reinforcing stigma associated with disability. Media portrayals of disability usually cast disabled presence as necessarily marginal within society at large. These portrayals simultaneously reflect and influence the popular perception of disabled difference.

Tropes

There are distinct tactics that the media frequently employ in representing disabled presence. These common ways of framing disability are heavily criticized for being dehumanizing and failing to place importance on the perspectives of persons with disabilities.

Inspiration porn

Inspiration porn refers to portrayals of persons with disabilities in which they are presented as being inspiring simply because the person has a disability. These portrayals are criticized because they are created with the intent of making non-disabled viewers feel better about themselves in comparison to the individual portrayed. Rather than recognizing the humanity of persons with disabilities, inspiration porn turns them into objects of inspiration for a non-disabled audience.[81]

Supercrip

The supercrip trope refers to instances when media reports on or portray a disabled person who has made a noteworthy achievement, but center on their disability rather than what they actually did. They are portrayed as awe-inspiring for being exceptional compared to others with the same or similar conditions. This trope is widely used in reporting on disabled athletes as well as in portrayals of autistic savants.[82][83]

Many disabled people denounce these representations as reducing people to their condition rather than viewing them as full people. Furthermore, supercrip portrayals are criticized for creating the unrealistic expectation that disability should be accompanied by some type of special talent, genius, or insight.

Disabled villain

Characters in fiction that bear physical or mental markers of difference from perceived societal norms are frequently positioned as villains within a text. Lindsey Row-Heyveld notes, for instance, "that villainous pirates are scraggly, wizened, and inevitably kitted out with a peg leg, eye patch, or hook hand whereas heroic pirates look like Johnny Depp's Jack Sparrow."[84] Disabled people's visible differences from the abled majority are meant to evoke fear in audiences that can perpetuate the mindset of disabled people being a threat to individual or public interests and well-being.

Self advocacy

Some disabled people have attempted to resist marginalization through the use of the social model in opposition to the medical model; with the aim of shifting criticism away from their bodies and impairments and towards the social institutions that oppress them relative to their abled peers. Disability activism that demands many grievances be addressed, such as lack of accessibility, poor representation in media, general disrespect, and lack of recognition, originates from a social model framework.

Embracing disability as a positive identity by becoming involved in disabled communities and participating in disabled culture can be an effective way to combat internalized prejudice; and can challenge dominant narratives about disability.[85]

Intersections

The experiences that disabled people have to navigate social institutions vary greatly as a function of what other social categories they may belong to. For example, a disabled man and a disabled woman experience disability differently.[86] This speaks to the concept of intersectionality, which tells us that different levels of one's identity (like their gender, race, or social class) intersect and create unique experiences of oppression and privilege.[87] The categories that intersect with a disability to create unique experiences of ableism include, but are not limited to, race and gender. The United Nations Convention on the Rights of Persons with Disabilities differentiates two kinds of disability intersection: race-disability intersection, and gender-disability intersection.[88] However, many more intersections do . Disability is defined differently for each person, it may be visible or invisible, and multiple intersections arise for particular individuals.

Race

Incidence of disability is reported to be greater among several minority communities across the globe, according to a systematic analysis of the Global Burden of Disease Study.[89] Disabled people who are also racial minorities generally have less access to support and are more vulnerable to violent discrimination.[90] A study in the journal Child Development indicated that minority disabled children are more likely to receive punitive discipline in low and middle income countries.[91] Due to the fact that children with disabilities are mistreated more often than those without disability; racialized children in this category are at an even higher risk.[92][93][94][95][96] With respect to disability in the United States, Camille A. Nelson, writing for the Berkeley Journal of Criminal Law, notes the dual discrimination that racial minorities with disabilities experience from the criminal justice system, expressing that for "people who are negatively racialized, that is people who are perceived as being non-white, and for whom mental illness is either known or assumed, interaction with police is precarious and potentially dangerous."[97]

Gender

The marginalization of disabled people can leave persons with disabilities unable to actualize what society expects of gendered existence. This lack of recognition for their gender identity can leave persons with disabilities with feelings of inadequacy. Thomas J. Gerschick of Illinois State University describes why this denial of gendered identity occurs:[98]

Bodies operate socially as canvases on which gender is displayed and kinesthetically as the mechanisms by which it is physically enacted. Thus, the bodies of disabled people make them vulnerable to being denied recognition as women and men.

To the extent that women and men with disabilities are gendered, the interactions of these two identities lead to different experiences. Disabled women face a sort of "double stigmatization" in which their membership to both of these marginalized categories simultaneously exacerbates the negative stereotypes associated with each as they are ascribed to them. However, according to the framework of intersectionality, belonging to two (or more) marginalised groups at the same time does not – in essence, gender and disability intersect to create a unique experience that is not simply the coincidence of being a woman and being disabled separately, but the unique experience of being a disabled woman. It follows that the more marginalised groups one belongs to, their experience of privilege or oppression changes: in short, a Black woman and a white woman will experience disability differently.[99]

According to The UN Woman Watch, "Persistence of certain cultural, legal and institutional barriers makes women and girls with disabilities the victims of two-fold discrimination: as women and as persons with disabilities."[100] As Rosemarie Garland-Thomson puts it, "Women with disabilities, even more intensely than women in general, have been cast in the collective cultural imagination as inferior, lacking, excessive, incapable, unfit, and useless."[101]

Socio-economic background

Similar to the intersections of race and disability or gender and disability, a person's socio-economic background will also change their experience of disability. A disabled person with a low socio-economic status will experience the world differently, with more obstacles and fewer opportunities, than a disabled person with a high socio-economic status.[102][103]

A good example of the intersection between disability and socio-economic status is access to education, as we know that there are direct links between poverty and disability - [103][104][105] often working in a vicious cycle.[106] The costs of special education and caring for a disabled child are higher than for an able-bodied child, which poses an immense barrier in accessing appropriate education.[107] The inaccessibility of appropriate education (at any stage), can lead to difficulties in finding employment, which often results in the vicious cycle of being 'bound' by one's experience as a poor and disabled person to remain in the same social structure and experience socio-economic exclusion.[108][109] In short, this vicious cycle exacerbates the lack of economic, social, and cultural capital for disabled people with a low socio-economic background. On the other hand, a disabled person of a high socio-economic status, may have an easier time accessing appropriate (special) education or treatment - for example by having access to better aids, resources, or programmes that can help them succeed.[110][111]

Assistive technology

Assistive technology is a generic term for devices and modifications (for a person or within a society) that help overcome or remove a disability. The first recorded example of the use of a prosthesis dates to at least 1800 BC.[112] The wheelchair dates from the 17th century.[113] The curb cut is a related structural innovation. Other examples are standing frames, text telephones, accessible keyboards, large print, braille, and speech recognition software. Disabled people often develop adaptations which can be personal (e.g. strategies to suppress tics in public) or community (e.g. sign language in deaf communities).

As the personal computer has become more ubiquitous, various organizations have formed to develop software and hardware to make computers more accessible for disabled people. Some software and hardware, such as Voice Finger, Freedom Scientific's JAWS, the Free and Open Source alternative Orca etc. have been specifically designed for disabled people while other software and hardware, such as Nuance's Dragon NaturallySpeaking, were not developed specifically for disabled people, but can be used to increase accessibility.[114] The LOMAK keyboard was designed in New Zealand specifically for persons with disabilities.[115] The World Wide Web consortium recognized a need for International Standards for Web Accessibility for persons with disabilities and created the Web Accessibility Initiative (WAI).[116] As at Dec 2012 the standard is WCAG 2.0 (WCAG = Web Content Accessibility Guidelines).[117]

Sport

an athlete tilts his wheelchair and raises an arm to block his opponent's shot
Wheelchair basketball match between South Africa and Iran at the 2008 Summer Paralympics

The Paralympic Games (meaning "alongside the Olympics") are held after the (Summer and Winter) Olympics. The Paralympic Games include athletes with a wide range of physical disabilities. In member countries, organizations exist to organize competition in the Paralympic sports on levels ranging from recreational to elite (for example, Disabled Sports USA and BlazeSports America in the United States).

The Paralympics developed from a rehabilitation program for British war veterans with spinal injuries. In 1948, Sir Ludwig Guttman, a neurologist working with World War II veterans with spinal injuries at Stoke Mandeville Hospital in Aylesbury in the UK, began using sport as part of the rehabilitation programs of his patients.

In 2006, the Extremity Games were formed for physically disabled people, specifically limb loss or limb difference, to be able to compete in extreme sports.[118]

Rights and government policies

Rights movement

The disability rights movement aims to secure equal opportunities and equal rights for disabled people. The specific goals and demands of the movement are accessibility and safety in transportation, architecture, and the physical environment; equal opportunities in independent living, employment, education, and housing; and freedom from abuse, neglect, and violations of patients' rights.[119] Effective civil rights legislation is sought to secure these opportunities and rights.[119][120][121]

The early disability rights movement was dominated by the medical model of disability, where emphasis was placed on curing or treating disabled people so that they would adhere to the social norm, but starting in the 1960s, rights groups began shifting to the social model of disability, where disability is interpreted as an issue of discrimination, thereby paving the way for rights groups to achieve equality through legal means.[122]

Advocacy for disability issues and accessibility in the republics of the former Soviet Union has become more organized and influential in policymaking.[123]

Policies and actions

Convention on the Rights of Persons with Disabilities

On December 13, 2006, the United Nations formally agreed on the Convention on the Rights of Persons with Disabilities, the first human rights treaty of the 21st century, to protect and enhance the rights and opportunities of the world's estimated 650 million disabled people.[124] As of January 2021, 182 nations have ratified or accepted accession to the convention.[125] Countries that sign the convention are required to adopt national laws, and remove old ones, so that persons with disabilities will, for example, have equal rights to education, employment, and cultural life; to the right to own and inherit property; to not be discriminated against in marriage, etc.; and to not be unwilling subjects in medical experiments. UN officials, including the High Commissioner for Human Rights, have characterized the bill as representing a paradigm shift in attitudes toward a more rights-based view of disability in line with the social model.[124]

International Year of Disabled Persons

In 1976, the United Nations began planning for its International Year for Disabled Persons (1981),[126] later renamed the International Year of Disabled Persons. The UN Decade of Disabled Persons (1983–1993) featured a World Programme of Action Concerning Disabled Persons. In 1979, Frank Bowe was the only person with a disability representing any country in the planning of IYDP-1981. Today, many countries have named representatives who are themselves individuals with disabilities. The decade was closed in an address before the General Assembly by Robert Davila. Both Bowe and Davila are deaf. In 1984, UNESCO accepted sign language for use in the education of deaf children and youth.

Policies in former Soviet Union republics

UN programs and OSCE work to align policy and programs in countries that were part of the former Soviet Union with the Convention on the Rights of Persons with Disabilities.[127]

Political issues

woman seated in a wheelchair with military personnel in background
A 28-year-old Iraqi woman who lost both of her legs during the Iraq War in 2005

Political rights, social inclusion and citizenship have come to the fore in developed and some developing countries. The debate has moved beyond a concern about the perceived cost of maintaining dependent disabled people to finding effective ways to ensure that disabled people can participate in and contribute to society in all spheres of life.

In developing nations, where the vast bulk of the estimated 650 million disabled people reside, a great deal of work is needed to address concerns ranging from accessibility and education to self-empowerment, self-supporting employment, and beyond.[128]

In the past few years, disability rights activists have focused on obtaining full citizenship for the disabled.

There are obstacles in some countries in getting full employment; public perception of disabled people may vary.[citation needed]

Abuse

Disability abuse happens when a person is abused physically, financially, verbally or mentally due to the person having a disability. As many disabilities are not visible (for example, asthma, learning disabilities) some abusers cannot rationalize the non-physical disability with a need for understanding, support, and so on.[129]

As the prevalence of disability and the cost of supporting disability increases with medical advancement and longevity in general, this aspect of society becomes of greater political importance. How political parties treat their disabled constituents may become a measure of a political party's understanding of disability, particularly in the social model of disability.[130]

Insurance

Disability benefit, or disability pension, is a major kind of disability insurance that is provided by government agencies to people who are temporarily or permanently unable to work due to a disability. In the U.S., the disability benefit is provided in the category of Supplemental Security Income. In Canada, it is within the Canada Pension Plan. In other countries, disability benefits may be provided under social security systems.

Costs of disability pensions are steadily growing in Western countries, mainly in Europe and the United States. It was reported that, in the UK, expenditure on disability pensions accounted for 0.9% of gross domestic product (GDP) in 1980; two decades later it had reached 2.6% of GDP.[129][131] Several studies have reported a link between increased absence from work due to sickness and elevated risk of future disability pension.[132]

A study by researchers in Denmark suggests that information on self-reported days of absence due to sickness can be used to effectively identify future potential groups for disability pension.[131] These studies may provide useful information for policymakers, case managing authorities, employers, and physicians.

In Switzerland, social policies in the field of disability have been significantly reshaped over the last two decades by reducing the number of allowances awarded and by increasing the recourse to vocational rehabilitation measures. Drawing on interviews conducted with individuals who have been involved in programmes set up by Swiss disability insurance, a study highlights their uncertainties and concerns relating to their place in society, as well as their reactions to disability insurance's interventions.[133][134]

Private, for-profit disability insurance plays a role in providing incomes to disabled people, but the nationalized programs are the safety net that catch most claimants.

Demographics

Estimates of worldwide and country-wide numbers of disabled people are problematic. The varying approaches taken to defining disability notwithstanding, demographers agree that the world population of individuals with disabilities is very large. For example, in 2012, the World Health Organization estimated a world population of 6.5 billion people. Of those, nearly 650 million people, or 10%, were estimated to be moderately or severely disabled.[135] In 2018 the International Labour Organization estimated that about a billion people, one-seventh of the world population, had disabilities, 80% of them in developing countries, and 80% of working age. Excluding disabled people from the workforce was reckoned to cost up to 7% of gross domestic product.[136]

Developing nations

Disability is more common in developing than in developed nations. The connection between disability and poverty is thought to be part of a "vicious cycle" in which these constructs are mutually reinforcing.[137]

See also

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Sources

Further reading

  • Albrecht, Gary L., ed. (2005). Encyclopedia of disability. Thousand Oaks, CA: SAGE Publications. ISBN 978-0-7619-2565-1.
  • Arditi, A.; Rosenthal, B. (1998). Developing an objective definition of visual impairment. Vision '96: Proceedings of the International Low Vision Conference. Madrid. pp. 331–34.
  • Bowe, Frank (1978). Handicapping America: Barriers to disabled people. New York: Harper & Row. ISBN 978-0-06-010422-1.
  • Charlton, James I. (2004). Nothing about us without us : disability oppression and empowerment ([3. Dr] ed.). Berkeley: Univ. of California Press. ISBN 978-0-520-22481-0.
  • Burch, Susan (July 2009). "(Extraordinary) Bodies of Knowledge: Recent Scholarship in American Disability History". OAH Magazine of History. 23 (3): 29–34. doi:10.1093/maghis/23.3.29. ISSN 0882-228X.
  • Burkhauser, Richard V.; Schmeiser, Maximilian D.; Weathers II, Robert R. (January 2012). "The Importance of Anti-Discrimination and Workers' Compensation Laws on the Provision of Workplace Accommodations Following the Onset of a Disability". Industrial & Labor Relations Review. 65 (1): 161–180. doi:10.1177/001979391206500109. S2CID 154605646.
  • Darling, Peter (August 2007). "Disabilities and the Workplace". Business NH Magazine. 24 (8).
  • Glenn, Eddie (1995). African American Women with Disabilities: An Overview. Archived from the original on March 4, 2016. Retrieved May 14, 2022.
  • Miles, Albert S (1994). "Brown v. Board of Education and the American with Disabilities Act: Vistas of equal educational opportunities for African Americans". Journal of Negro Education. 63 (3).
  • Johnstone, David (2001). An Introduction to Disability Studies (2nd ed.). Fulton. ISBN 978-1-85346-726-4.
  • Masala, Carmelo; Petretto, Donatella Rita (2008). Psicologia dell'Handicap e della Riabilitazione [The Psychology of Handicap and Rehabilitation] (in italiano). Rome: Kappa. ISBN 978-88-15-06226-0.
  • Oliver, Michael (1997). The Politics of Disablement. London: St. Martin's Press. ISBN 978-0-333-43293-8.
  • Pearson, Charlotte (2006). Direct Payments and Personalisation of Care. Edinburgh: Dunedin Academic Press. ISBN 978-1-903765-62-3.
  • Shakespeare, Tom; with Anne Kerr (1999). Genetic Politics: from Eugenics to Genome. Cheltenham: New Clarion Press. ISBN 978-1-873797-25-9.
  • Kaushik, R. (1999). "Access Denied: Can we overcome disabling attitudes". Museum International. 51 (3): 48–52. doi:10.1111/1468-0033.00217. ISSN 1468-0033.
  • Lansing, Michael J. (January 2009). "'Salvaging the Man Power of America': Conservation, Manhood, and Disabled Veterans during World War I". Environmental History. 14: 32–57. doi:10.1093/envhis/14.1.32. ISSN 1084-5453.
  • Longmore, Paul (July 2009). "Making Disability an Essential Part of American History". OAH Magazine of History. 23 (3): 11–15. doi:10.1093/maghis/23.3.11. ISSN 0882-228X.
  • Petretto, Masala C. (2008). "From disablement to enablement: conceptual models of disability in the 20th century". Disability and Rehabilitation. 30 (17): 1233–44. doi:10.1080/09638280701602418. ISSN 0963-8288. PMID 18821191. S2CID 19377518.
  • Rose, Sarah F. (2017). No Right to Be Idle: The Invention of Disability, 1840s–1930s. University of North Carolina Press. pp. xvi, 382. ISBN 978-1-4696-2489-1.

External links