Gary L Albrecht & Lois M Verbrugge. Handbook of Social Studies in Health and Medicine. Editor: Gary L Albrecht, Ray Fitzpatrick, Susan C Scrimshaw. Sage Publications, 2000.
Disability is a major contemporary theme in health policy and programs, and a commonplace experience in people’s lives. Its rise in public attention and personal experience is due to several factors: increases in life expectancy and thus rising lifetime chances of chronic illness and dysfunction, interventions that extend the lives of disabled persons, environmental exposures and unhealthy lifestyles, organized advocacy on behalf of disabled persons, and expanded social and political definitions of disability (Institute of Medicine, Board on International Health 1997; LaPlante and Carlson 1995). In contrast to several decades ago, people are likely to encounter disabled persons in public places, to have a disabled family member or friend, and to experience disability themselves. The financial and social welfare burdens of disability are rising for many communities and countries (DeParle 1997; Georges 1997). Disability has seized the attention of government officials, is prompting scientific research in disciplines from medicine to sociology, and is generating interest in the lay population.
This chapter addresses disability in a global context. It considers disability in its worldwide presence, noting differences in definitions, social acceptance, and political impetus across countries. First, we discuss the multiple definitions of disability that exist in any society and across societies. Second, we discuss causes and prevalences of disability across countries. Third, we note how sociocultural forces help produce disability. Fourth, we discuss the main kinds of societal response to disability in the world, and fifth, the ensuing personal and interpersonal meanings of disability. Sixth, we turn to features of disability policy in modern and developing economies. Lastly, we suggest future trends in disability advocacy, policy, and research.
What is disability? Like the concepts of health and illness, disability is difficult to define and operationalize. A generic feature is a person’s difficulty in performing a task or activity because of an underlying physical or mental dysfunction. However, the particular difficulties and the specific tasks are varied, and the ways of evaluating difficulty are diverse as well. In the disability literature, there are many theoretical models, legal definitions, health and social service agency definitions, and politically correct and socially common terminologies (Albrecht 1997a). All of these refer to the same general concept (disability), but they vary considerably from each other depending on ideology, cultural setting, and intended use (Bury 1997).
In this section, we consider several arenas of definitions: historical and traditional, modernist, professional, government, statistical, and scholarly.
Historical and Traditional
Historical definitions of disability emphasized abnormality, deviance, and the inability of people to fit into society or perform expected roles. Disability was a defining social status. It was intertwined with being poor, marginal, deviant, sick, and jobless. It was a terrible thing, and people with it were to be ignored and exiled from regular society.
As modern medicine emerged in the nineteenth century, what we will call the traditional view replaced the historical one and became dominant. The traditional definition stated that disability came about because of illness or other organic abnormality. Disability was thus ‘inside’ the person. It was a personal characteristic in the same way as age or socioeconomic status. Diseases and injuries with very high chances of disability were named ‘disabilities.’
In countries with modern medical establishments, acceptable disabilities were spinal cord injury, cerebral palsy, multiple sclerosis, deafness, blindness, congestive heart failure, schizophrenia, and severe depression. This focus on a limited set of conditions (with typically severe dysfunctions) penetrated the thinking of many countries, especially those associated with European cultures. The frequently disabling conditions of sub-Saharan Africa, India, China, and the Middle East—malnutrition, diarrhea, malaria, tuberculosis, communicable childhood diseases—were excluded from the roster. Gradually, the Western view has broadened to include a larger list of conditions, with moderate chances of and degrees of dysfunction. However, little room is still allowed for dysfunctions due to conditions deemed ambiguous by the medical profession, such as multiple chemical sensitivities, undetermined low back pain, severe stuttering, chronic fatigue, and psychological stress (Crossley and Crossley 1998; Hydén and Sachs 1998), and the tendency to name disability by its instigating disease or injury, as opposed to on its own terms, persists.
In the Western world, dissatisfaction with the medical model has risen in recent decades. New premises for disability emerged, emphasizing the importance that minority group membership, social attitudes, rehabilitation, environmental, and political economics have in the definition and experience of disability. Societal causes of disability became the focus (and sometimes the sole focus, discounting any medical origins at all). New models concentrate on the social construction of disability, personal experiences of disability, consumer empowerment, types and availability of government benefits, and the effects of physical and cultural environment on the individual (Albrecht 1997b, Finkelstein 1993; Oliver 1990). These models stress the power of forces external to the individual (that is, extrinsic rather than intrinsic) for defining disability and shaping disabled persons’ lives.
Proponents of social models are often publicly forceful; they are suspicious that nondisabled persons have no suitable notions or perceptions on the topic. How can people without the personal experience of disability be sensitive to the disability world? Debates that counterpose medically oriented and socially oriented models are often very heated, not just for reasons of intellectual difference, but also for reasons of experience credentials.
No matter what definitions researchers and scholars are debating, it is physicians and policymakers whose definitions most influence the lives of persons with disabilities. Physicians are the first (and sometimes sadly the last) professionals to see and evaluate disabled people and make recommendations about therapies. Further, physicians decide a patient’s official disability status for government disability programs, and thus the denial of or access to benefits for them (Albrecht 1992; Blaxter 1976; Stone 1984). The physician is given and maintains these powers because the medical, inside-the-individual model of disability is the paradigm still accepted by most governments. Our real-world programs still operate on medical terms.
Governmental definitions align closely with the medical model. Eligibility criteria for work disability benefits are now based mainly on a person’s medical status, with secondary attention to job-relevant dysfunctions. Historically, disability benefits were provided first to those members of society deemed to be most valuable, such as veterans of foreign wars, merchant seamen, railroad workers, and those employed in nationally important industries. Contemporary government programs have expanded from these categorical definitions to broader ones based on health conditions, their expected duration, and their severity.
In any particular country, one will find a potpourri of government definitions. They are tailored to fit particular programs and their political or financial agendas. Program definitions are made and modified in isolation from other programs. The United States government has about fifty specific definitions of disability attached to social programs (Bickenbach 1993; Domzel 1995; Percy 1992). For example, the Americans with Disabilities Act of 1990 states that: The term “disability” means, with respect to the individual—(a) a physical or mental impairment that substantially limits one or more of the major life activities of such an individual, (b) a record of such an impairment, or (c) being regarded as having such an impairment (42 USC 12101(2)). The Internal Revenue Service code reads: ‘An individual is permanently and totally disabled if he is unable to engage in any substantial gainful activity by reasons of any medical determinable physical or mental impairment which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months. An individual shall not be considered to be permanently disabled unless he furnishes proof of the existence thereof in such form and manner, and at such times, as the Secretary may require’ (28 USC & 22(e)(3)). In Great Britain, under the Disability Discrimination Act of 1995, ‘a disability is defined as either a physical or a mental impairment, which has a substantial and long-term adverse effect on a person’s ability to carry out normal day-to-day activities’ (s. 1 (1) (Gooding 1996: 10). Governmental definitions are very sticky because they are stated in laws and statutes. Even when interagency groups proclaim the need for more consistency and integration of definitions, it rarely happens.
Governments in developing countries face the tough problem of developing definitions suitable to their own societies and needs. Disability models developed in the West were transported to the rest of the world without much attention to different health problems and cultural viewpoints. For example, spinal cord injury (SCI) programs are a prominent feature in Western countries and are promoted elsewhere, but they seldom exist in developing countries. The reasons are compelling: the services are prohibitively expensive; people with SCI usually die within several years because of pressure sores and urinary tract infections; they are kept entirely at home by their families. In this setting, spinal cord injury is not judged to be a disability warranting prominent national attention. As another example, some conditions rare in the West are common elsewhere. In the Brazilian Amazon where malaria is endemic, having serious malaria symptoms does not excuse one from the performance of daily roles because ‘everyone has it’ (World Resources Institute 1998). Lastly, activities that figure so strongly in disability evaluations in the West, such as reduced ability to work, inability to brush one’s teeth, or need for help dressing, lose their relevance and heft in rural and developing economies. Without options for government assistance, workers with low back pain may continue working without complaint despite great pain. Personal cleanliness may have lower value, and having someone’s assistance for disability may be expected and nonembarrassing. It is easy for Western health officials and scholars to forget that most of the world’s population lives under very different circumstances than their own. What other societies consider socially important dysfunctions may be quite different than those in EuroAmerica.
Despite the imbedded stance of government policies, the importance of social factors is percolating into government thinking and statistics! The transformation is very evident in the disability classification scheme sponsored by the World Health Organization (WHO). The International Classification of Impairments, Disabilities and Handicaps (ICIDH) framework was developed to encourage medical professionals and health statisticians to pay more attention to disability in client data and published statistics. The first version, published in 1980, considered health problems as the launching point of disability, but paid detailed attention to classifying types of disabilities and disadvantages that can ensue (World Health Organization 1980; see also Grimby et al. 1988). In ICIDH 1980, impairment is defined as structural or functional abnormality resulting from injury or disease. Disability is restriction in an individual’s ability to perform activities of daily living like washing, eating, bathing, walking, and lifting objects. Here at last, disabilities are named by the task/role problem people have, not by the condition they have. Handicap refers to social disadvantage that can occur due to impairment or disability. Bringing the notion of disadvantage into equal status with impairment and disability was an especially bold step.
However, ICIDH 1980 ran into swift trouble with social-model advocates, who said the scheme still kept disability ‘inside’ the individual, insinuating that it belongs to and is caused within the person. They claimed it did not pay sufficient attention to constraints in the external environment such as steep steps, transportation barriers, job discrimination, and negative public attitudes. The sharpest critics of ICIDH 1980 said that disability is entirely a social or community product, and that features of social, physical, and cultural environment are the sole causes of disability. By excluding medical causes altogether, they set the battle lines tightly ‘for’ and ‘against’ use of the classification. Furthermore, there were obvious inconsistencies, overlaps, and omissions in ICIDH 1980, and this diminished its appreciation in professional and scientific circles.
An international group is preparing a new version of ICIDH in the 1990s. The worldwide enterprise assures that the product will have good cultural coverage of disabilities and broadly acceptable terminology. Following strong opinions that disability should not have negative or pejorative terms, the ICIDH-2 is named International Classification of Impairments, Activities, and Participation (World Health Organization 1997). Its approach is to maintain impairments as functional and structural problems at the body/mind level, to delineate activities as simple tasks and abilities at the person level, to have participation reflect engagement in social roles, and to name contextual factors (environment) that facilitate or impede participation. Inconsistencies that peppered the first version are being remedied. In short, ICIDH-2 is a sophisticated classification that takes both medical and social factors into account. By the year 2000, there will be a fine-quality classification scheme with worldwide relevance available for use in public health statistics, research, and client records.
Disability theory is also moving towards a blend of medical and social perspectives. A theoretical stance that is rapidly gaining scholarly ground is that disability is the gap between personal capabilities and environmental demands (Brandt and Pope 1997; Verbrugge 1990; Verbrugge and Jette 1994). This mismatch makes it difficult or impossible for someone to do a particular activity. Is the person the cause of disability? No. Is environment the cause of disability? No. The cause lies in their interaction for a given activity, but if it is an ‘interaction’ or ‘gap’, is disability then unmeasurable? No, it is very measurable. Asking people about their difficulty in doing a task or measuring their performance objectively, or asking a professional, spouse, or other person to evaluate it, are all apt techniques to measure disability. A great contribution of the person-environment approach is its balanced perspective of remedies for disability. Remedies can aim at fixing the person (medical orientation), or fixing the environment (social orientation), or both. Medical strategies aim to boost capability and environmental ones to reduce demand. Success of either sort reduces disability, making it easier to accomplish a task.
Scholars note that definitions of disability are complicated by the nature of disability itself. Disability is often multiple and usually dynamic.
It is unusual to find someone with a single, static disabling condition or just one enduring activity limitation. Disabilities occur in sets of interrelated physical and mental conditions that mutually affect each other. In established market economies, for example, people with low vision may also have diabetes, congestive heart failure, and a high level of personal stress resulting from living with the other conditions. In less developed economies, people with low vision often also have malnutrition, diarrheal diseases, heart disease, malaria, or major depression (Murray and Lopez 1996a). The cause of low vision may be different (macular degeneration or an accident in the first case, and river blindness in the second), and the environments and resources to deal with the disability may be quite dissimilar.
Degree of difficulty performing a task can rise or fall over time due to flare-ups of the underlying condition, therapeutic and rehabilitation success, reduction in personal standards for doing the task, and plenty of other factors. In the short run, disability is often characterized by an ebb and flow of good days and bad days (Charmaz 1991). Chronic illnesses and disability are also life course events. They demand social transitions that behaviorally alter and redefine activities, self-definition, and goals. A life course view of disability focuses attention on personal and disease trajectories, timing, critical events, and sequences in the disability process (Albrecht and Levy 1991; Strauss and Glaser 1975). In this context, aging and disability are two interrelated social experiences. The time of onset and the present stage in the life course also dramatically affect the impact of the condition (Verbrugge and Jette 1994).
Causes and Distribution of Disability
Disability has always existed in human society, but it is more publicly apparent today because of mass media, increasing numbers of laws, the presence of disabled people in public places, and growing awareness of disability in Asia, Africa, Latin America, and the Middle East.
Until recently, there was no truly global presentation of the epidemiology of disability. Most statistical literature was country-specific or had comparisons of several Western nations (Osmond and Barker 1991; Pope and Tarlov 1991; Shiraishi and Arimoto 1982). This situation changed when the World Health Organization and World Bank recognized that the burden of disability in emerging and developed nations had serious implications for worldwide economic development, human rights, and quality of life. In 1992, the two agencies launched the Global Burden of Disease Study, designed to (a) develop internally consistent estimates of mortality from 107 major causes of death for the world and eight geographic regions, (b) estimate the incidence, prevalence, duration, and case fatality for 483 disabling sequelae resulting from those causes of death, (c) ascertain the fractions of mortality and disability attributable to ten major risk factors, and (d) generate projection scenarios of mortality and disability for the year 2020 (Murray and Lopez 1996b: 740). All calculations were prepared by age, sex, and region. To have comparable findings across regions, the research group developed a composite measure called the disability-adjusted life year (DALY). It is the sum of years of life lost from premature mortality plus years of life with disability, adjusted for severity of disability (Murray and Lopez 1996a). The DALY work is part of a larger movement among epidemiologists, economists, and demographers to characterize active life years and health-related quality of life. These concepts were proposed to estimate the expected remaining years of functional well-being, independence, or general well-being in an individual or population (Katz et al. 1983). The architects of these concepts and measures argue that healthful environments and behaviors can postpone disability and compress it into the last years of life (Vita et al. 1998). In this context, DALYs measure the years of active life lost to disability.
In the world overall, the three leading causes of DALYs in 1990 were lower respiratory infections, diarrheal diseases, and conditions related to the perinatal period. The study is attentive to the importance of not just physical health problems, but also mental health ones—unipolar major depression proves to be a prominent cause of disability. With respect to risk factors, it is remarkable that the global burden of disease attributable to physical inactivity, especially in Western countries, is nearly equal to that of hypertension (Murray and Lopez 1996b). Projections were made about shifts in disability causes from 1990 to 2020. Infectious and communicable diseases, malnutrition, and poor sanitary conditions are expected to come increasingly under control, so the top five causes of DALYs in 2020 are anticipated to be ischemic heart disease, unipolar major depression, road traffic accidents, cerebrovascular disease, and chronic obstructive pulmonary disease. The pulmonary and respiratory conditions will be the outcome of this century’s epidemic of tobacco-related diseases. Extrinsic conditions (road traffic accidents, war, violence, and self-inflicted injuries) are expected to play a larger role in disability, as well as this century’s newest major disease, HIV/AIDS.
There are considerable differences across regions in the prevalence and causes of disability. Disability prevalence is highest in sub-Saharan Africa and lowest in market economies, without large differences between men and women in either instance (Murray and Lopez 1997). In wealthy regions, almost 90 per cent of disability is caused by noncommunicable diseases and injuries. The chances of disability increase with age and cumulative risk exposure (see also Guralnik et al. 1996; Vita et al. 1998). In poorer regions, however, nearly half of disability is due to infectious and childhood diseases and injuries. In these countries there is a high risk of disability for the young as well as the old.
Depending on how disability is measured, about 12-15 per cent of the world’s population is disabled (Albrecht 1997b; United Nations 1992). This means that 846 million people will be disabled in the year 2000, with 80 per cent of them living in developing countries (300 million in Asia, 50 million in Africa, 34 million in Latin America). The number will continue to rise due especially to aging populations, environmental exposure, and social violence.
Disability is not a desirable social feature, and many countries strive to export it. Corporations and governments have moved much of their ‘dirty work’ off shore, so that risks of occupational illness and injury are shifted to persons in developing countries. For example, Nike athletic shoes are made in factories in Indonesia and Vietnam where wages are low and work conditions are often disabling (Bloomberg News 1998). The chemical release in Bohpal that killed and disabled hundreds of workers and community residents is an instance of dangerous production facilities being located in nonmodern economies. Further, international pharmaceutical companies and national medical research institutes of Western countries have often undertaken their more risky clinical trials in the Third World, where death or disability will not produce the same outcry and lawsuits as they will at home (Angelí 1997; Barry and Molyneux 1992; Wardman 1997). When these pharmaceutical companies do develop vaccines, antibiotics, and prophylactic drugs for conditions like malaria, HIV/AIDS, diphtheria, and sexually transmitted diseases, they often price them at unaffordable levels or insist on pre-payment in hard currency (Garrett 1994; Scripps Howard News Service 1998). Such actions virtually guarantee that disability risk and experience is thrust upon the Third World or on those who cannot pay for treatment.
Within countries, known disability risks are also aimed toward the working classes, illegal immigrants, undocumented workers, and the poor. Disability is often associated with powerlessness, disenfranchisement, and poverty (Handler and Hasenfeld 1997). In the United States, garment sweatshops discovered recently in Manhattan and South Carolina were staffed with undocumented deaf Mexican workers. Immigrants from the Magreb (in France) and from Turkey (in Germany) work at risky jobs that nationals will not take; women and children are often found in the highest-risk and lowest-pay jobs. In all of these instances, wealthy people with influence have moved disability risk to poor people without it.
Disability as a Social and Cultural Product
A nation’s culture, political economy, environment, social structure, and history affect the kinds of disabilities that are produced, defined, and dealt with (Albrecht 1992).
- In the Western world, where strenuous recreation is fashionable, news of disabling injuries from mountain climbing, car racing, and long distance running is common. Sports medicine and sports rehabilitation facilities are found throughout the United States and other recreation-avid countries. Consider how different the next example is.
- Until recently, Kenyans were more likely to suffer disabling injuries from elephants and other wild animals than from automobile or industrial accidents; this was viewed as a high disability risk. By contrast, dysfunctions due to malaria (endemic in the rural countryside) were discounted because they were so commonplace, and no matter what disabilities and causes pertained, the nation lacked an accessible, integrated rehabilitation system to treat and support disabled people.
- Throughout the world, the causes and definitions of disability keep changing as risks, social roles and leisure pursuits, and public attitudes change. Landmine accidents and civil/regional wars have become a significant cause of disability for people in Iran, Iraq, Afghanistan, Cambodia, Vietnam, and Sri Lanka. Reduced lung function due to smoking, diabetes, and heart conditions is a rising cause of restricted work, social life, and leisure in Great Britain, Germany, and the United States.
Three specific ways in which society and its participants powerfully shape disability are now discussed: social inclusion, social distancing, and the built and physical environment.
Disability has long been linked with social inclusion and exclusion (Bessis 1995). Stiker (1982) discusses how these forces operated in France over the past three centuries. Who is a citizen and who is not? Who should be allowed to live a regular social life and who should be taken away? In eighteenth-century France, disabled persons were those with leprosy, deformity, and profound mental illness. Disabled persons were also migrants, gypsies, vagabonds, and homeless persons, who were seen as a threat to the established social order. Strongly influenced by the Catholic Church, French health authorities institutionalized these people in large Parisian hospitals and released them only when they were no longer deemed as social threats. The authorities’ power was illustrated by their insistence that les exclus renounce Protestant or Jewish beliefs and convert to Catholicism before receiving treatment. Castel (1995) points out that disaffiliation from established communities and economic vulnerability—for whatever reason—puts people at high risk of being labeled ‘disabled’ and a member of les exclus. In France, the ultimate issue was full citizenship, and disabled persons were not eligible. This historical background colors how les handicapés are defined and treated today in France. Disabled people often have adequate social welfare benefits but still feel treated as something other than members of their society (Ravaud et al. 1997).
Interactions of nondisabled persons with disabled persons are influenced by diverse motives (Moscovici 1997). Why do people give money to disabled persons? Studies of helping behavior found that Italians give money to the poor and disabled to avoid a curse or the ‘evil eye,’ or with the belief that such gifts prevent having disability themselves. In the United States, people give money to keep disabled persons at a distance, achieve income tax relief, and reaffirm their moral values. Thus, a particular behavior toward disabled persons can spring from diverse cultural motivations.
Built and Physical Environment
Public architecture is a powerful, ostensibly impersonal way to permit disabled persons entry to some places and to impede their entry to others (Imrie 1996). Governments, schools, businesses, and factories all make decisions about initial design and later renovation that influence access. For example, social security and welfare offices, medical and rehabilitation facilities, and some public transportation are accessible, but court houses, high government officials, and educational institutions are often flanked by architectural barriers that serve literally and symbolically to distance disabled people from opportunities for advancement. The built environment is a visible arena for access, but the physical environment can cause just as much impediment. The miserable air quality in airplanes reduces the ability of persons with lung conditions, multiple chemical sensitivities, and immune system problems to travel, and compromises their well-being and health if they do. Cold dry winters can ‘ground’ people with chronic obstructive lung disease, and dryness in their residences can jeopardize breathing and reduce activity.
Responses to Disability
Four general societal approaches to disability have emerged worldwide: social exclusion, financial constraint, medical causation, and social causation. The list is in order of traditional to modern stances; emphases on finances, medicine, and social construction represent evermore-modern views. Several approaches can coexist in a country, but one of them tends to have preeminence. In any era and society, it is hard to eliminate the first approach (social exclusion) entirely, but fine legislation, mass media, and advocacy can lessen it.
The social exclusion (‘out of sight, out of mind’) approach is still very prevalent in the world. Historically, in Western societies, disabled people were cared for in their homes by their families, or they lived on the streets as beggars and homeless (Bungener 1995). Social exclusion remains prevalent in resource-poor countries of all kinds. In others, with modern economies, architectural barriers and social distaste still impede access for persons with physical or mobility problems. In Paris, individuals with spinal cord injury (SCI) are infrequently seen on the streets or at worksites because they often live on upper floors of buildings without elevators. Despite receiving disability benefits from the state and living on their own, they cannot easily go out or find jobs in accessible places. In Mexico, social access for SCI persons is even more constricted because of lower social benefits and family ‘protection.’ In many ways social exclusion is economical to a society. If disabled people are publicly invisible they are seldom in others’ consciousness or moral landscape. This fundamental economy has given exclusion its enduring heft across time and space.
The financial constraint (‘we cannot afford to recognize disability’) approach appears in many different forms. Although disability has public knowledge and sympathy, there are inadequate financial and capital resources to help, (a) In poor agricultural countries disabled people are found in every village, but the local government has no resources to assist them. Disabled people either subsist on the support of their families and villagers or become sick and die. In larger towns and cities there are insufficient jobs, and this prevents government officials from developing employment programs for disabled persons, (b) Even in countries with well-established disability benefits programs, government officials watch the ‘rolls’ carefully to avoid swelling clienteles and expenses. Eligibility criteria are kept as-is unless legal action forces expansion. Disabilities due to new diseases (viruses, environmental exposures, protracted stress) wait in the wings for decades before being accepted as legitimate criteria for benefits (Studdert and Brennan 1997). (c) In all countries, refugees and illegal immigrants are the last to be considered for formal assistance, yet they often enter with disabilities or work and live in milieux that pose high risks (Choquet and Richard 1990). In short, public awareness may seem like a step forward from social exclusion, but the two approaches stick together very well and provide a double-barreled rationale (one social, the other governmental) for inattention to disabled persons.
The medical causation approach emerged in countries with national monetary resources and modern medical structures. Physicians are trained to detect and diagnose pathologies and to provide therapies that reduce or halt them. Rehabilitation is less preferred (being slower in its effects), dependent on long-term patient motivation, and requiring interaction with other professionals (such as physical therapists). As medical specialization increased, the emphasis on medical therapies became entrenched. For individuals with chronic problems and dysfunctions expected to last many years or even a lifetime, the medical approach proved frustrating and demeaning. Disabled people felt viewed as biological material rather than whole social individuals. Insightful physicians have pointed out the dehumanizing aspects of modern medicine to their peers for a long time (see Blackwell (1890) 1995), but to no widespread avail. New diagnostic techniques (genetic screening, DNA mapping, HIV testing) are praised for their sophistication, but that sophistication is solely biological and provides no indication of disease consequences for the individual (Nelkin and Tancredi 1989). This is troublesome enough for persons with acute conditions and short-term limitations, but deeply awry for those with longstanding disabilities. They need a person-centered approach with comprehensive evaluation and care for physical, mental, and psychosocial aspects of their lives (Barbour 1995).
The medical approach has indeed dramatically altered the lives of disabled persons by reducing pain, averting common sequelae (secondary conditions), and extending life. Several medical specialties have even emerged that concentrate on disability (e.g., rehabilitation medicine) or whole-person treatment (e.g., geriatrics), but overall, the medical model has kept power in the hands of professionals who underplay the personal knowledge and insights disabled persons have, their needs for respect and social integration, and their wholeness of body, mind, and spirit.
The social causation model is a reaction to the medical one. In its purest form, activists and scholars claim that disability has nothing to do with a person’s disease or impairment, but instead is entirely created by societal barriers and attitudes. Social causation models are evolving with variant forms in Great Britain, North America, Europe, and Australasia (see Barnes and Mercer 1996; Barton and Oliver 1997; Davis 1997; Ferguson et al. 1992; Hales 1996). The social model is proving to be an important political tool for mobilization and public action and also serves as the foundation for the academic field of disability studies. This model represents a paradigm shift from emphasis on an individual’s disease, illness, and impairment to focus on social, cultural, political, and economic factors that produces exclusion, physical and social barriers, discrimination, and powerlessness for disabled people (Priestly 1998). Social models of disability are constructed on the principle that ‘disability is a socially mediated state not a fixed attribute of the individual’ (Gill 1998: 8). The goal is not to intervene to correct individual impairments and defects, but instead to alter social, built, and physical environments so that disabled people can achieve their goals and have autonomy. Political emphasis is on the rights of disabled people to participate in all domains of social life, and to modify environments and attitudes to achieve that.
A blend of medical and social models is advocated by many public health officials and scientists. They say that similar attention must be paid to environmental/societal and medical factors for both the causes and remedies of disability. This blending is respectful to all professions engaged in disability evaluation and remedy, and it offers a wider base for scholarship and public health programs. Disability studies programs are being created in universities, with strong social sciences emphasis, but also with ties to clinical medicine and allied health.
Personal and Interpersonal Meanings of Disability
Disability is a master status. It is a personal identity, which if recognized, shapes entire social worlds for individuals and their family, friends, and acquaintances. Demographic characteristics, such as sex, race/ethnicity, marital status, and social class, can add additional burdens to the disability experience by creating multiple restrictions in resources and opportunities. Women, minorities, and poor persons have far more difficulty than others in dealing with disability, because of less education, lower income, fewer job opportunities, less health insurance, and discrimination. For example, women in India and Bangladesh suffer downward mobility if they are household head and/or disabled (Charlton 1998). Self-respect is hard to develop for youngsters with early-onset disability, and difficult to maintain for middle-aged and older persons with late-onset disability. Self-help groups are a fine buttress and can be a launching place for new assertive identity. Advocacy groups demand that disabled people be called on by organizations to help define disability and design programs (Oliver 1992).
What is, or is not, considered a disability influences how disabled people view themselves and are treated by others (Bérubé 1997). In most countries and communities, some disabilities are more acceptable than others. For example, in the former Soviet Union, being a male veteran with spinal cord injury from the Battle of Leningrad is more acceptable than a woman with AIDS due to prostitution. In Great Britain, having a traumatic brain injury is more acceptable than longtime undiagnos-able chronic fatigue syndrome. Even when a disability (disabling condition) is generally acceptable, there is considerable confusion about expectations for the disabled persons and general public who encounter them. A key problem is that evaluations in professional settings rarely tap critical details of real life. People may pass functional tests for home-based activities in a clinic setting, but be unable to do tasks at home because of structural barriers. Similarly, they may pass tests of work-based activities but be unable to work for an 8-hour stretch or from one day to the next. Exacerbating this matter, disabled persons often report they are held to higher standards and monitored more closely for performance than nondisabled persons!
Cultural representations of disabled people are reflected in language. There is considerable current debate in international and national settings about the terminology for referring to people with disabilities. In Britain, many people in the disability community and wider public use ‘disabled people’ to signify the social nature and community context of disability. In France, les handicaps is used to emphasize the corporeal integrity of the individual, environmental limitations, and ability to work. In the United States, ‘persons with disabilities’ is preferred to underscore that the individual has whole worth and integrity; he happens to have a disability, but this does not mean incompleteness. In this chapter, we follow the prevalent convention used in Britain, ‘disabled people,’ to accentuate the social model of disability. Overall, a common goal of current discussion is replacement of negative wordings with neutral or positive ones. This is sometimes almost infeasible to accomplish linguistically, but the forces of ‘political correctness’ are immense at this point of history.
Key themes of social policies and programs developed by governments to address disability are: income support benefits, rehabilitation programs, provision of technical and personal assistance, special residences or educational programs, and civil rights, (a) Western countries have developed and modified policies throughout the twentieth century, and theirs are now extensive and detailed. Western countries watch each others’ experience with disability programs closely, hoping to learn things that can make their own programs more efficient and economical. Occasionally, major overhauls are made (for example, recently in the work disability programs of Great Britain and The Netherlands) without much empirical or comparative basis, but driven by intense needs for reduced costs and efficient evaluations, (b) Rural agriculture-based countries have a small portfolio of policies and programs, often simpler forms of Western ones, but sometimes very distinctive to their own culture and history. Those with a strong ethos of family responsibility tend to have small-scale disability programs, existing as a last resort for disabled persons without family supports.
Disability policies and programs are hard to maintain in situations of social chaos. Regional and ethnic wars predictably result in many disabled persons, not only from the conflict itself, but from ensuing malnutrition, communicable diseases, and remnant war devices (landmines, bombs). The increased population of disabled persons consists of civilians, combatants, and refugees. They face compromised systems of care. Such swollen needs for disability support can sink an otherwise adequate program. In short, peace and economic stability buttress disability policies and programs, allowing them to do their job and carefully change. Wars have the opposite effect, especially in countries with weaker social program infrastructure and resources.
From the perspective of disabled persons, interventions are best when based on local realities and culture, (a) Low-technology devices have had great success in developing countries. An example is the Jaipur foot prosthesis (McGirk 1997). This artificial limb is light and durable, is suitable for use in rice paddies, and is acceptable in societies where people are barefoot indoors. It can be made for $28 and in 45 minutes with scrap metal and vulcanized rubber. The prosthesis is now seen throughout Afghanistan, giving mobility to persons who lost limbs from landmine explosions, (b) Disability prevention in developing countries probably takes its best shape in literacy, general education, and job training programs. Education increases opportunities for choice and social advancement, and it steers people away from exposure to risks in low-pay jobs and from involvement in civil unrest. Bringing jobs to local areas reduces people’s urge to migrate to crowded, unsanitary conditions in large cities.
In the West and former socialist countries of Europe, three policy issues now have the attention of the public and government: the environment, the shape and future of social welfare systems, and migration.
Responsibility for prevention and treatment of disability, and efficacy of interventions, are the essential environmental issues. Is primary prevention of disability a responsibility of the government at all, or is it the sole responsibility of individuals, who (apparently) ‘choose’ their own risks? Which is more economical for public expenditure; altering physical, built, and social environments to enhance access for disabled persons, or expanding rehabilitation programs for them? Does universal design—designing things to help all persons, whether nondisabled or disabled—have a good pay-off for preventing disability? These issues inspire not just scholarly and policy debate, but also professional self-interest (Ratzka 1992). The medical profession is a powerful, large business in Western countries, and is becoming more so in the former socialist ones (Percy 1992). Reimbursement potential is increasing medicine’s interest in disability despite its longstanding reluctance to deal with functional consequences of disease. But for-profit milieux still limit health professionals’ commitment to disability, pushing them to treat specific episodes rather than planning for holistic and continuous care. A disabled person’s ability to pay (either directly with income or insurance, or indirectly through government health and welfare benefits) still figures in quality of rehabilitation care and assistance in integrating into the community.
The structure of social welfare systems is a topic of great debate in most advanced economies. While most of the countries are democratic, the flavor of democracy varies considerably from one to another. At issue is the perceived social contract between citizens and government. The ‘rugged individualist’ value system of the United States relies heavily on individual insurance and charitable contributions from the private sector, in contrast to France, where government’s fundamental responsibility to its citizens is a deeply held value. Many Americans think that the French are nai’ve in avoiding the consequences of free market realities. By contrast, the French think that American democracy brutalizes the poor and needy and deprives part of its population from basic human rights while preaching such values to other countries. Both perspectives highlight critical issues in disability policy. What is the social contract between government and citizens, and who is willing to pay for it? What is the minimum standard that every individual can expect, and how much support is morally enough? Should benefits serve as income supports or simply pay for medical/rehabilitation services? Should benefits be coupled with incentives or requirements for rehabilitation to draw disabled persons toward productive social activity? Should employers be encouraged or required to reserve jobs for disabled persons (especially in economies with high unemployment rates)? What is a reasonable accommodation in public places and worksites? These are immense questions that pit social values against public finances, and whose answers have long-term implications for taxes borne by individuals, families, and businesses.
Persons in need often move to a country, state, or region with better social benefits and work opportunities than their origin place. This occurs both in stable societies (because national programs often permit specific local implementations) and in unstable ones (disrupted by wars and droughts at home or nearby). This rational decision can have a backlash. Discrimination often results when the newcomers are numerous and perceived as freeloaders. Those with privilege frequently react to such migration by discriminating against and excluding newcomers, especially the poorest. Stresses on the public purse and public attitudes end up changing disability policies and rehabilitation (Bickenbach 1993). The French debate over exclusion of undocumented workers, foreigners on welfare, and disabled persons is indicative of this process (Gros-Jean and Padieu 1995). In the United States, the minority group and civil rights arguments behind the Americans with Disabilities Act, and more recent discussions of disability as ‘human variation,’ reflect attempts to bring disabled people into public places and consciousness (Scotch and Schriner 1997).
In sum, disability policy is a litmus test for a society’s overarching human values. It is one signal of how a nation values and treats its minority and disadvantaged groups (Walzer 1997). Written policies do speak louder than fine rhetoric and espoused values.
The Future of Global Disability
As the world population continues to grow in size and to age, the pressures of disability will rise in advanced market economies and still more in developing countries, where aging occurs rapidly when birth rates fall. Disability poses a variety of political problems for governments such as using public resources, managing welfare programs, controlling population flows, and accepting high-risk businesses. In developed countries, the main issues now are the eligibility rules for disability benefits programs to keep current and future payments in tow, the civil rights of disabled persons and programs to enhance access, regional/state differences in welfare benefits, and illegal and legal immigration of persons for low-paying high-risk jobs. In developing countries, the main issues are control of infectious and communicable diseases that cause long-term disability, reduction of inhumane work conditions, management of land resources and drought, and reduction of ethnic and regional wars.
We discuss seven themes that will influence disability policies and experience in coming decades: technology, community residence of disabled persons, advocacy, social acceptance, links between aging and disability, open discussion of moral issues, and research.
The importance of technology for alleviating disability is of rising interest throughout the world. Business and governments are taking greater interest in the development and widespread availability of low-cost prosthetic and mobility-enhancing devices. While development of high-technology rehabilitation is important for helping profoundly disabled persons, it is unaffordable for most countries and helps few rather than many disabled persons. Emphasis on universal design in architecture and community planning will increase, justified by the fact that it lets everyone operate in a more user-friendly environment.
The concepts of independent living and autonomy for disabled persons will increase, first in developed countries where public resources can assist these values, and later in developing countries. Tailored individual care programs will also increase. Services for older persons and disabled persons will gradually be integrated, both for cost-savings and because the great majority of disabled persons are/will be elderly. National policies and commitments will be important to these efforts, but local communities will provide great creativity. Teamwork of community groups, local government officials, and local employers will fashion community-wide programs that suit the specific needs and goals of disabled residents.
The disability community is becoming increasingly united, visible, and international. The impetus generated by the British and American disability communities in successfully advocating human-rights-oriented disability legislation will be influential in stimulating advocates in other nations to push for similar laws and programs. Information access and communication ease via the Internet and World Wide Web is rapidly helping disability scholars and officials develop international ties and discuss ideas.
As more people experience disability themselves, public attitudes towards disabled people are likely to change towards increased acceptance, and as more disabled people go about their business in public and live longer, disability will become a public rather than cloistered experience. Encountering disabled persons will be commonplace and comfortable, rather than infrequent and distressing to the general public. Jobs will remain an issue of contention. Discrimination against disabled people in the labor force will continue, and perhaps even intensify in regions where unemployment rates are high. Legislation and business incentives can help, but the best solution is changes in employer attitudes and in workplace accommodation.
Aging and Disability
Population aging is now a worldwide phenomenon, swift for persons aged 65 and older in developing countries, and for persons aged 85 and older in developed countries (which have experienced aging throughout the twentieth century). Falling birth rates and falling late-life mortality rates both provide momentum to population aging. Older persons have higher risks of incurring (incidence) and having (prevalence) chronic illnesses and associated disabilities. Thus, the bulk of disability will increasingly be among older persons. Health and disability policies aimed at older persons must always think about disability and vice versa. The two will be intertwined for a very long time.
Critical moral issues will persist and will be answered variously across countries; how can disabled persons’ freedom and self-worth be enhanced, and how can burdens on families and government be kept moderate and manageable? Who is a genuine citizen of a society, and what are the basic rights of citizens? What are a society’s obligation to assure human rights to anyone in their country? How will support for disabled people be paid for, and what are the minimum kinds of support that are fair and necessary? Who or what is responsible for disability’s creation and who is responsible for its treatment? What strategies in approaching the global disability problem are cost-effective, alleviating disability for many at acceptable cost? A country has better chances of making well-considered decisions now, because these issues are discussed in worldwide arenas.
Scientific research and scholarship on disability are increasing in amount and improving in quality. They serve as good buttresses for government policies, rehabilitation programs, and technology development. Some key contemporary topics are defining disability in the global context, studying disability as person-environment fit, tracing the disablement process for specific conditions or population groups, measuring the efficacy of specific interventions, and evaluating policy options. Exiting from the longstanding medical perspective is difficult, no matter how intelligent and desirous researchers are. Further work is needed to develop integrative models that take into account all of these factors: organic bases of body and mind impairments, societal ‘framing’ of disability, the causal importance of physical and built environments, the nature of discrimination, and the force of political economy. Achieving this will require the interdisciplinary collaboration of social scientists, physicians, engineers, and ethi-cists, and to make models truly worldwide in relevance requires discourse among international scholars.
With or without anyone’s attention, global disability will be on the rise for many decades to come, fueled by population aging, environmental degradation, and social violence. As disability grows, communications and thinking by government officials and scholars are also becoming worldwide. Programs and ideas advanced in one place can be known swiftly and considered elsewhere. The ‘emergence of global disability’ really refers to the contemporary springing forward of public advocacy and government programs on behalf of disabled persons. It is in good time and greatly to be encouraged by each of us in our roles as citizen and professional.