Models for Understanding Disability

Elena Yarskaya-Smirnova— Ph.D. in Sociology; Professor at the Higher School of Economics National Research University;
Editor-in-Chief, ‘Journal of Social Policy Research’

Nikita Bolshakov—Lecturer, Higher School of Economics National Research University

This article was published in Issue 1 of Accessibility and Inclusion in Contemporary Art: transitory parerga [Dostupnost’ i inklyuziya v sovremennom iskusstve: transitory parerga], edited by Vlad Strukov.

When speaking about disabilities, the most important initial step is to understand what is meant by the term. At first glance, the definition of the concept of "disability” does not raise a significant question, but the models of perceiving disability that undergird this definition are diverse. Models are the social representations, explanations, and ideologies that are embodied in widespread beliefs, norms, and practices. Modern social concepts of disability can be divided into two broad groups: medical and social explanations. They were, however, preceded by the traditional concept of understanding disability.

Traditional conception

Reason 

  • Supernatural reasons
  • Caused by sins or magical abilities of the person or their family

Status

  • Other
  • Foreign

Interaction with society

  • Solves their problems by themselves or together with other individuals with disabilities

The traditional view of disability is characterized by several explanations for the concept and, accordingly, several different ways of treating people with disabilities. All of them, however, share an emphasis on human illness, so these models can be tentatively combined into a group of medical ones. The oldest conceptualization of disability is the moral (religious) model, one of the traditional concepts. Explaining disability in moral or religious terms is based on the idea of punishment for sins, bad karma, possession, witchcraft, and, as paradoxically as it may seem in the above context, a special gift from God.

In the Middle Ages (and even today), people with physical and mental disabilities were integrated into society to varying degrees, based on the possibilities for joint survival in their family or community. For this reason, people with disabilities became beggars (there were even beggars ' guilds, like in the Ottoman Empire), fools or buffoons, victims of witch hunts and objects of exorcism, healing rituals or acts of mercy. Of course, this moral model does not correspond to the principles of modern social policy, but this does not mean that the echoes of such an interpretation of the term ‘disability’ are not still encountered today.

The “Personal Tragedy” model, in which disability is viewed as an unfortunate event for a person or their family for which others should offer compassion, pity, and support, is also one of the traditional models. By focusing on the physical characteristics of a person, the “Personal Tragedy” model contributes to the stigmatization of people with disabilities: positioning them as “sick” or “requiring help.” In one variation on this model, the “hero” is a person who has overcome their “limitations” and reached some sort of height—as though they did not have a disability at all but were simply “ordinary.” Such people are perceived as “super-cripples” (as a rule, these are men) whose feats should be admired by society (which, again, turn out to be nothing more than adjustments to the way that “normal” people live).

This, in turn, gives rise to the next model, “Charity and Mercy,” which cements both the informal practices of begging and mercy, preserved from ancient times and the contemporary, quite official work of foundations and volunteer organizations, as well as philanthropy. As a rule, foundations and volunteer organizations help selectively, focusing on specific kinds of impairments or illnesses and thereby created new parameters of exclusion.

Charity

Reason

  • Not important

Status

  • Object of mercy

Interaction with society

  • Dependent on the goodwill of the benefactor

Criticism of this model from people with disabilities themselves is that people with some kinds of special needs or diseases are turned into a tool for the privileged classes to embody virtue and are made dependent on the goodwill of donors, all without providing any guarantees of systematic assistance.

“Charity and Mercy” can also take criminal forms: the most common are human trafficking and purposefully injuring children and adults for the purposes of begging. The formal institutions in this model are most often established by people without disabilities (with some exceptions) who are members of a foundation or volunteer movement. The informal institutions, meanwhile, are created by people with disabilities or their relatives and friends, and human traffickers are responsible for the illegal ones.

The administrative model refers to more modern (post-traditional) interpretations of “otherness,” complementing older definitions of disability with certification. In other words, a person only becomes disabled once they have a specific legal type of confirmation, proving their rights on the basis of an expert examination. This creates a division into the “worthy” and “unworthy,” or “real” disabled people and freeloading parasites. Since the fourteenth century in Great Britain, the poor were legally divided into two categories: “worthy” (the elderly, cripples, widows, orphans) and “unworthy”  (capable of work but unemployed). Naturally, only the “worthy” ones were offered help. These ideas were developed in British law under Elizabeth I (Act for the Relief of the Poor, 1601). The Act for the Relief of the Poor, which had equals in other European countries and in Russia, assigned those who could not work to parishes; meanwhile, those who could work but lacked the necessary skills were to be trained and then put to work.  Those “unworthy” of help (meaning with professional skills, but still unemployed) were to find a legal source of income in one way or another, and disobedience (unemployment) was met with physical punishment and imprisonment—as established, for instance, by Peter I's decrees to eliminate begging.

The medical model, closely related to the administrative one, also applies to post-traditional ones. It focuses on a person and their pathology or dysfunction. As a result, people with disabilities are assigned the status of “patient,” suggesting a need for their correction or isolation. The historical context of the medical model's development is associated with administrative structures: the formation and strengthening of the nation-state, the growth of production, and the strengthening of medicine's role in the management of society. In modern times, the classification of human value according to labor contribution has proved to be extremely significant. At the same time, approaches to the examination of disability were improved. “Cripples” became “invalids,” and the ministers of worship (as was the case in the religious model) who kept watch over public welfare in the name of the state's interests were replaced by doctors and scientists. By presenting people as sick and in need of treatment and isolation, the disabled were turned into objects to be cared for and controlled. This control manifested itself in various forms: from radical and explicit prohibitions of negative eugenics, including the forced sterilization of “mental and social deviants,” and outright social hostility to more sophisticated and subtle approaches to controlling sexuality and reproduction. Institutions (shelters, boarding schools, etc.) were established to accommodate, train and employ disabled people, people with mental health issues, and children from poor families. They were initially considered agents of progressive reform, but in fact, turned out to be institutions of social control and segregation of the “abnormal” (that is, those who were unfit for productive labor). In these types of institutions, there were frequent instances of violence (Zavirzhelk, 2009). In the 1970s in the United States, a powerful wave of “deinstitutionalization” began: freeing people from orphanages and other such institutions. A series of laws were passed and funding approved to created conditions for life, study, and work for people with disabilities, permitting a gradual rejection of the views described above.

Medical

Reason

  • Illness
  • Within the people themselves

Status

  • “Not the same”
  • Abnormal

Interaction with society

  • Need to be made normal through healing
  • If they can’t be “healed,” people are put in a special institution

The economic model, the rehabilitation model, and the functional limitation model are close to the medical and administrative models (Tarasenko, 2004). All of these models emphasize the physical, mental or other characteristics of a person. These features are called “disadvantages,” making social, economic, and cultural life difficult or impossible, or otherwise leading to “inability” in a broader sense of the word.

Following the medical model results in an artificial separation of people with disabilities from the rest of society, cultivates segregation at the household level through the creation of separate premises, holding separate events and developing special practices that involve only those people with a certain type of disability, thereby preventing any attempts at integration. This leads to additional stigmatization of people with disabilities and an attendant decrease in their status, and, consequently, a deterioration in their quality of life.

Since the 1970s, the social concept of understanding disability has come to the fore, in which disability is understood as a consequence of the unfair structure of society and is associated with a set of definitions and stereotypes adopted in a particular community. The ideas at the core of the social concept came about during “deinstitutionalization”: numerous publications and speeches by scientists, journalists, parents of children with disabilities, and activists proved the inhumanity of keeping people with disabilities in boarding schools and orphanages. The UN Convention on the Rights of Persons with Disabilities provides a precise social definition of disability: “an evolving concept...that results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others” (UN  Convention on the Rights of Persons with Disabilities 2006; ratified by the Russian Federation on 3 May 2012). Disability, according to this model, is not just a physical or mental illness but the result of social interactions; it is constructed in specific historical conditions created by the state, the market, society, professionals, family, friends, and even random passers-by. Within the framework of social concept, society must search for answers to questions about why people with disabilities are excluded from society and how to change social institutions to make them accessible and convenient for all.

Social

Reason

  • Social attitudes
  • Social and economic conditions

Status

  • Equal member of society

Interaction with society

  • Society must create a barrier-free environment
  • Need to let a person with disabilities live a full life

The social concept can be found in a number of permutations. According to the political economy model, the problems of disability (as well as old age) are not physical but social and economic factors that cause economic dependence and lead to many people becoming poor and isolated—that is, socially excluded. The consequence of this is the inability of people with disabilities to participate in certain forms of culture, while low self-esteem and exclusion from prestigious social groups worsen the situation of disabled people and reduce their social status.

According to the sociocultural model, both the ability and inability of a person to do anything are determined by cultural mechanisms: from the physical environment created by humankind (the absence or presence of ramps, tactile tiles, etc.) to school assessment systems and language metaphors that belittle the importance of Others (illustrated by H.G. Wells' story “The Country of the Blind”). A constructivist approach, closely related to this idea, recognizes disability as a product of negative social attitudes and cultural practices. This also gave rise to the postmodern model, according to which disability is produced by discursive practices (that is, created when people write and talk about it).

The minority model works in a sociopolitical context, considering discrimination to be the primary barrier faced by people with disabilities in their quest for full social participation. Adherents of this model actively fight for the rights of persons with disabilities and oppose attitudes of pity, advocating instead for positive discrimination (special conditions for people whose rights are constantly violated). Directly related to this approach is the independent living model, whose proponents advocate for the right and opportunity of people with disabilities to fully control their lives.

Integration

Inclusion

The prospect of human diversity is a model according to which disability is understood as a mismatch between human characteristics and the existing abilities of societal institutions to account for them. “Institutions” here is a term that refers to the forms of organization of economic, social, cultural, and political life: family, community, economy, public administration, organizations that provide employment, education, health, transport, communication, and other services, as well as formal and informal rules. This model is closely linked to the concept of universal design, which strictly speaking entails the revision of the built environment, the improvement of architecture and technologies that are maximally adapted to the needs of all people. In a broader sense, it requires a revision of existing institutions (meaning practices and rules). If many organizations, including museums, have been thinking about creating an accessible physical environment for a relatively long time, then the revision of practices and rules paired with the creation of an inclusive environment without intellectual, sensory, or socio-psychological barriers is a step that most have yet to take. It should be noted that overcoming many of these barriers is not possible at the organization level alone, so it is necessary to develop comprehensive interactions and create a completely inclusive and friendly environment.

Common to all permutations of the social model is the following postulate: the main problems for people with disabilities arise from negative social attitudes, ill-conceived and discriminatory policies, power relations, and cultural practices. Disability, meanwhile, is understood as a type of social oppression, the product of thinking and culture—in other words, a generally accepted distinction between “normal” and “abnormal.” The social model proposes a transition from seeing disability as a personal medical problem to creating opportunities for participation in the community, providing access to the usual types of social activity (like employment, education, and recreation), as well as defending those people's rights.

Poststructuralist, feminist, and postmodern studies have played an important role in the development of the social concept, taking into account the multi-figurative aspects of physicality (Hughes and Paterson, 1997). The concept of “disability culture” has emerged, referring to the creative activities of people with disabilities: original art projects, creative workshops, exhibitions, and galleries, as well as choreography, sports, film festivals, literature, and research. Special mention should be made of the phenomenon of Deaf culture1,  which is directly related to sign language: a special form of communication among the Deaf and hard of hearing. The cultural model of understanding Deafness in the second half of the twentieth century begins to take a dominant position among other approaches (Ladd, 2003). Within the framework of the cultural model of understanding Deafness, this form of disability is seen as a positive feature that allows a person to become part of the community of sign language speakers and a special culture of communication, producing and consuming certain forms of art that are practically inaccessible to hearing people. A similar positive attitude towards self-identification as a person with a certain form of disability is gradually developing in other communities.

As has been often noted, the main difference between the social model and the medical model is the attitude to the very concept of disability. In the medical model, disability is perceived as a disease or pathology, and people with disabilities themselves as deviants who need treatment or even isolation. The social model considers disability to be a kind of label or construct that has been formed and reformulated throughout history alongside the changing priorities of social policy, society's value orientations, and the development of knowledge and technology.

It is only natural that the development of new approaches to the understanding of disability has led to the emergence in recent decades of new concepts that reject the familiar concept of disability as such. For example, scientists have put forward a technical model of disability, which states that over time, the only difference between people with disabilities from everyone else will be their more active use of technical devices (cochlear implants, prostheses, etc.). However, at the present stage of the development of social relations, these ideas look somewhat utopian, especially given that society has not yet made a final transition from the medical model to the social one.

Today, the “Personal tragedy” model still prevails in popular culture. Still, more and more projects are being realized by creators and participants who themselves live with disabilities and are overturning the paternalistic stereotype of disabled people as beneficiaries and dependents, conducting serious analytical work, and destroying taboos, stereotypes, fears, and prejudices through humor (Yarskaya-Smirnova, Romanov, 2011; Hartbley, 2014). Using the social model, constructs or images of disability are taken from everyday life, as well as from representations in media. In this context, the films shown at the Cinema Without Barriers festival,  held annually by a non-profit organization called Perspektiva, are interesting. The metaphor of disability in many new films is part of the creative search for images and plot devices, all of which are created in the spirit of a holistic, truly humane perspective. Some of these images are accepted with enthusiasm by disabled people themselves, while others are rejected.

Nevertheless, images of disability still fall victim to cliché all too often. News, literature, advertisements, and film often feature stereotypical images of disabled people that are closer to the medical model. As a rule, disability serves as a metaphor for a test or even a lesson for the main character; a disabled person is an alter ego or an inspiring example for a non-disabled person. Characters with disabilities often embody metaphors of dependence, vulnerability, pity, mercy, overcoming, and triumph.

Of course, the lives of people with disabilities do differ to some degree from those of the majority, but at the same time, people with disabilities, just like everyone else, perform a variety of social roles in their families, schools, and professions. However, numerous barriers (physical, social, etc.) significantly complicate the performance of these roles. Unfortunately, museums are no exception: along with physical obstacles that make it difficult for a person with a disability to directly access them, there are intellectual, sensory, and, most importantly, socio-psychological barriers. Some of them can be overcome by creating a clear navigation system, preparing social stories or equipping sensory unloading rooms, recording audio and video guides, or conducting guided tours with sign language translation. Overcoming other barriers is possible only through systematic work with all employees of and even visitors to the museum, as complete inclusion within the social concept implies, first of all, barrier-free communication and interaction.

The modern world is increasingly receptive to the social model of disability and inclusion—that is, to the inclusion of people with special needs as full members of society in all spheres of society. It is extremely important to abandon the perception of a person with a disability as “sick”: it is necessary to promote the creation of an environment that will allow absolutely everyone to participate in social life, including in cultural activities. Reprogramming deep-rooted stereotypes is difficult but extremely necessary work. Using the social model as a reference point, many museums around the world are conducting research and creative projects in order to forge new paths for representing disability.

1. From here on out, Deaf may be capitalized. In English-speaking countries where the concept of Deafhood is prevalent, the spelling D/deaf people may occur. If deaf means hearing-impaired and is as close as possible to the Russian term "deaf people," Deaf represents their belonging to a special group and is derived from the concept of Deaf people as a community of people united by a common sign language and culture—similar to the different nationalities whose names are spelled with a capital letter in English (Palennyy, 2014. p. 297).

Literature

  1. Zavirzhek, D., 2009. ‘Vospominaniya invalidov o seksual’nom nasilii: fakty i umolchaniya’ [Disabled people’s memories of sexual violence: facts and omissions]. In: Zhurnal issledovaniy sotsial’noy politiki [Journal of social policy research]. Vol. 7, № 3. p. 349–380.

  2. Convention on the Rights of Persons with Disabilities. URL: un.org/ru/documents/decl_conv/conventions/disability.shtml

  3. Romanov, P.V. and Yarskaya-Smirnova, E.R., 2006. Politika invaidnosti: sotsial’noe grazhdanstvo invalidov v sovremennoy Rossii [Politics of disability: social citizenship of people with disabilities in contemporary Russia]. Saratov: Nauchnaya kniga.

  4. Romanov, P.V. and Yarskaya-Smirnova, E.R., 2011. ‘Telo i diskriminatsiya: invalidnost’, gender i grazhdanstvo v postsovetskom kino [Body and discrimination: disability, gender and citizenship in post-Soviet cinema]. In: Neprikosnovennyy zapas [Untouchable reserve], № 2 (76). URL: magazines.russ.ru/nz/2011/2/ro6.html.

  5. Tarasenko, E.A., 2004. Sotsial’naya politika v oblasti invalidnosti: krosskul’turnyy analiz i poisk optimal’noy kontseptsii dlya Rossii [Social policy in the field of disability: cross-cultural analysis and search for the optimal concept for Russia]. In: Zhurnal issledovaniy sotsial’noy politiki [Journal of social policy research], № 1 (2). p. 7–28.

  6. Hartbley, K., 2014. ‘Dobro pozhalovat’ v Sergeichburg: krip-maskulinnost’ i “komediya priznaniya” v Rossii’ [Welcome to Sergeichburg: creep-masculinity and the ‘comedy of recognition’ in Russia] In: Zhurnal issledovaniy sotsial’noy politiki [Journal of social policy research], № 12 (1).

  7. Yarskaya-Smirnova, E.R. and Romanov P.V., 2009. ‘Geroi i tuneyadtsy: ikonografiya invalidnosti v sovetskom vizual’nom diskurse’ [Heroes and parasites: iconography of disability in the Soviet visual discourse]. In: Yarskaya-Smirnova, E.R and Romanov, P.V. (ed.). Vizual’naya antropologiya: rezhimy vidimosti pri sotsializme [Visual anthropology: forms of visibility under socialism]. Мoscow: Variant, TsSPGI. p. 289–331.

  8. Dodd J. et al. (eds). Rethinking Disability Representation in Museums and Galleries RCMG, University of Leicester, December 2008. URL: www2.le.ac.uk/departments/museumstudies/rcmg/projects/rethinking-disability-representation-1/ rdrsmallest.pdf.

  9. Drake R. F. Understanding Disability Policies. Basingstoke: Macmillan, 1999.

  10. Hughes B. and Paterson K. The social model of disability and the disappearing body: towards a sociology of impairment, in: Disability and Society. 1997. Vol. 12.3.

  11. Ladd P. Understanding Deaf Culture: In Search of Deafhood. Clevedon: Multilingual Matters, 2003.

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