Gary L Albrecht. Handbook of Social Problems: A Comparative International Perspective. Editor: George Ritzer. Sage Publication. 2004.
The Growing Importance of Disability in the World
Disability is a contentious issue in the world because it epitomizes debates over what constitutes a social problem and its effects on the global population. Disability is a universal experience touching all individuals through their bodies, social relationships, government policies, and the political economy. People experience disability in themselves, those around them, and in the society at large (Finkelstein 1993).
Disability occurs across the life course either through episodic events or chronic conditions, such as heart disease, pulmonary conditions, and depression, which generally worsen over time (Albrecht and Levy 1991). If individuals are not disabled now, they will be if they live long enough or happen to be touched by an epidemic, surprised by an accident, violently abused, or caught in a war zone (Guralnik, Fried, and Salive 1996). We see this in our daily lives, in the life courses of our parents and their friends, and in the daily news reports from different parts of the world. On a personal level, disability is a defining experience giving people renewed meaning and frequently calling out their best, but often altering their self-identities and social roles and the lives of those around them (Bérubé 1997).
Global ethical debates over how to deal with abortion, euthanasia, mental illness, care for the elderly, and the growing worldwide demand for rehabilitation and assistive care reflect in part the impact of disability on our lives and society (Zwi and Yach 2002). Disability calls social values into question because individuals and societies can be judged by how they treat disabled people. In terms of the political economy, disability is often perceived as a “burden” on individual well-being and on national development (Murray and Lopez 1996a). Because of demand, rehabilitation goods and services are a burgeoning industry and area of innovation (Albrecht 1992). By any measure, disability is a personal experience and a social problem with a global reach that differentially affects individuals within and between societies.
Depending on the part of the world being considered, the population studied, measures employed, and reporting mechanisms in place, disability prevalence is reported to be between 2 and 63 percent of the population. In some areas where disability is politically or culturally seen as an embarrassment or where there are virtually no reliable reporting mechanisms, disability, especially related to stigmatized conditions, is seriously under-reported. Yet there is substantial evidence that in those instances where untreated conditions such as AIDS are highly prevalent, where work and environmental conditions are unregulated, and where there are ongoing wars and civil disruptions, disability may affect over half the population (Albrecht and Verbrugge 2000). In any case, when true prevalence rates are ascertained, disability consistently emerges as a global social problem.
In this chapter, I will discuss the different ways that disability is defined and conceptualized as a social problem. Second, I will review the epidemiological data on disability in various parts of the world. Third, I will consider how disability is distributed and experienced cross-culturally. Fourth, I will examine the cross-national responses to disability. Finally, I will look to emerging developments in the field.
Disability definitions are hotly contested for numerous personal, scientific, economic, political, and ideological reasons. The Oxford English Dictionary (OED) definition of disability exemplifies the debate:
Disability: 1) Lack of ability (to do something); inability, incapacity. Now rare. 2) Shortage of money. 3) An instance of lacking ability; now spec. a physical or mental condition (usu. permanent) that limits a person’s activities or senses, esp. the ability to work. 4) Incapacity recognized or created by the law; legal disqualification.
Since disability definitions are used for myriad purposes and represent the social construction of a condition, stakeholder groups will often heatedly disagree on the meaning, measurement, or use of the disability concept. Returning to the OED definition, disability is used to refer to inability or incapacity on the part of an individual, the relation of disability to money, a physical or mental condition, or an incapacity as constructed by the law. By this set of definitions, disability is anchored in the individual, is a medical or social condition related to role expectations and being poor, limits the individual’s ability to work and earn money, and is constructed by society and its laws.
Critics quickly respond to such definitions that disability does not reside in the individual, but in discrimination imposed by society, in the physical and social environment that limit the individual’s ability to be independent, and in the interaction between individuals’ impairments and society’s responses to them expressed in reduced role expectations, prejudices, unfriendly laws, and discriminatory policies. The lively discourse around disability, then, reflects a wide diversity of experiences, interests, and intended consequences of those stakeholders invested in defining disability.
The United States government has about 50 specific definitions of disability attached to different social programs (Albrecht and Verbrugge 2000; Bickenbach 1993). For instance, the Americans with Disabilities Act of 1990 states:
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 impairment, or being regarded as having such an impairment. (42 USC 12101)
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 time, as the Secretary may require. (28 USC & 22(3))
In Great Britain, under the Disability Discrimination Act of 1995,
A disability is defined as either a physical or mental impairment, which has a substantial and long term adverse effect on a person’s day-to-day activities. (s. 1 (19)) (Gooding 1996)
Disability is usually conceptualised as a multi-dimensional experience for the person involving organs or body parts, such as impairment of the mobility of joints or bones, or the functional effects on certain activities, for instance lifting or gripping objects with the hand. There may be involvement in a person’s participation in aspects of life, such as education, work or leisure. Participation can be facilitated by the provision of assistive technology or environmental modifications. Physical and environmental factors play a significant role in the creation of disability. (Australian Institute of Health and Welfare 2001:8)
There are two major laws relevant to disability in Australia that employ this definition, the Disability Services Act 1986 and the Disability Discrimination Act 1992. In practice, disability is determined in Australia by whether or not the person has a limitation, restriction, or impairment that has lasted or is likely to last for 6 months or more. Such impairments include loss of sight, loss of hearing, incomplete use of feet or legs, and so forth (Australian Institute of Health and Welfare 1997).
In the European Community (EU), there is considerable activity in addressing disability issues at the present, particularly since 2003 is the EU Year of the Disabled. In cross-national studies of disability in the EU, disability was determined by asking individuals whether they had a chronic physical or mental health problem, illness, or disability and whether they were hampered (severely or to some extent) in their daily activities. The EU response to disability focuses on the problem of inclusion versus exclusion of people from society (Gros-Jean and Padieu 1995):
The Commission in its Communication “building an Inclusive Europe,” invites the Member States to strengthen their commitment and to promote greater solidarity for more inclusive economies and societies: the challenge is not only to provide a better assistance to those excluded (or at risk of exclusion), but also to actively address the structural barriers to social inclusion thus reducing the incidences of social exclusion. (European Disability Forum 2001:7)
The definitions of disability in developing nations are not so clearly determined. Persons with spinal cord injuries, for example, usually do not have the resources and medical care to survive for years after injury, so not many of them can be counted as disabled in resource-constrained nations. Likewise, 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).
After heated controversy and field testing in many countries around the world, the World Health Assembly (WHO 2001) endorsed the International Classification of Functioning, Disability and Health (ICF). This system of conceptualizing and defining disability is being used worldwide to classify disability. In this system, a person’s functioning and disability are conceived as a dynamic interaction between health conditions and environmental and personal factors (WHO 2001:6). Disability, then, is the umbrella term for any or all of an impairment of body structure or function, a limitation of activities, or a restriction in participation. The key components of disability are defined as follows:
- Body functions are the physiological functions of body systems (including psychological functions).
- Body structures are anatomical parts of the body, such as organs, limbs, and their components.
- Impairments are problems in body function and structure, such as significant deviation or loss.
- Activity is the execution of a task or action by an individual.
- Participation is involvement in a life situation.
- Activity limitations are difficulties an individual may have in executing activities.
- Participation restrictions are problems an individual may experience in involvement in life situations.
- Environmental factors make up the physical, social, and attitudinal environment in which people live and conduct their lives. These are recorded as either facilitators or barriers (both on a 5-point scale) to indicate the effect they have on the person’s functioning.
These definitions are the starting points from which ongoing debate continues over disability definitions, disability determination, and what constitutes an appropriate social response to the problem. Criticisms of the precursor to the ICF, the World Health Organization International Classification of Impairments, Disability and Handicaps (ICIDH II), were based on the complaint that the ICIDH II was grounded in the medical model that located disability in the individual, in pathological (abnormal) conditions, and that medical professionals were the only or at least the most qualified persons qualified to deal with disability and its attendant social problems (Grimby, Finnstram, and Jette 1988). Such a conception of disability was found wanting in considerations of the physical and social environment, the experience of disabled persons, empowerment, social discrimination, social values on human life, human rights, and the notion that disability is a normal, natural experience of moving through the life course. The ICF revision is a serious attempt to remedy some of these fundamental problems with the ICIDH II by considering inclusion, participation, the community, and the environment.
Pfeiffer (2001) concisely summarizes the alternate approaches to the medical model in conceptualizing disability. These other models deserve serious consideration when examining disability as a social problem because they directly impact the definition of the problem, where it is situated, what intervention strategies should be considered, and what social policies make the most sense. Pfeiffer points out that there are at least nine alternatives to the medical model of disability:
- The first is the social constructionist version as found in the United States, which argues that disability is a set of social roles and expectations that have been constructed by the major institutions in society and are defined as problematic.
- The second, the social model version espoused in the United Kingdom, is Marxist in orientation, often stressing class conflict. According to the social model, disability is a result of power imbalances between disabled people and health and welfare professionals who often make unilateral decisions about social situations not related to their medical expertise. The social model also sees disability as a problem that resides in the environment and is a result of discrimination, often producing dependency.
- The third position is that impairment and personal experiences are integral components that must be considered in defining and responding to disability.
- The fourth model is the oppressed minority version of disability, which conceives of disabled people as a minority group, like racial and ethnic groups, who must employ similar strategies to gain human rights and the exercise of full citizenship.
- The fifth model conceives of disability in terms of the “independent living movement,” which defines disabled people as competent and responsible decision makers who should be given resources and have the right to choose how to allocate them to serve their needs.
- The sixth version is a postmodern approach to understanding disability in historical texts, crosscultural contexts, and in the deconstruction of the representations of disability to ascertain the fundamental orientations and unstated assumptions that societies have applied to disabled people.
- The seventh version envisions disability as a universal experience recognizing that we will all be disabled at one time or another or in one form or another.
- The eighth version presents disability as human variation and should be appreciated as but one characteristic that is shared among human beings.
- The ninth version emphasizes discrimination based on disability status. The result is that disabled people are prevented from fully engaging in society because of the physical and social barriers placed in their way.
These different approaches to defining and analyzing disability represent the rich discourse that is under way on theoretical, pragmatic, applied, activist, and social policy levels concerning our understanding of the place of disability in society (Barbour 1995; Barnes 1991; Barnes and Mercer 1996).
The Epidemiology of Disability
Disability has multiple causes and different prevalency rates in various parts of the world. Coalminers in the United States, for example, for years suffered from “Black Lung” disease and chronic respiratory conditions that often disabled and killed them, before environmental and occupational reforms ameliorated mining conditions. Today, obesity constitutes a major cause of disability in the United States because of the stress that added weight puts on joints and the skeleton and its relation to Type II diabetes, which increases risk for cardiac, vision, renal, and circulatory problems. Diabetes is an epidemic in the United States, a growing problem in industrialized countries, and is even beginning to affect populations in developing countries. In tropical climates, malaria, schistosomiasis, and guinea worm are major causes of disability, while diarrheal diseases are major culprits in developing countries.
The amount and distribution of disability in different areas of the world is contingent on the ways that disability is actually distributed and measured. As we have seen, for example, there are more than 50 ways of measuring disability in the United States, depending on the scientific rationale, political forces, ideology, and end purposes influencing the measurement strategy. To address just some of these measurement issues, there is a group of government officials and academic researchers working on standardizing the questions and protocols used to measure disability in major national surveys undertaken by the Department of Health and Human Services National Health Interview Survey, the Census Bureau, Social Security Administration, and Labor Department. There is also considerable variation in questions and methods used to estimate disability around the world. That is why WHO has put so much effort into developing and encouraging the use of the ICF.
The estimates of disability in the United States range from about 12 to 22 percent, depending on the instruments and methods being used. The Survey of Income and Program Participation (SIPP), for example, produces higher estimates than some other surveys because it uses a broad-based definition of disability. The SIPP definition considers limitations in specific functional activities, activities of daily living (ADLs), and instrumental activities of daily living (IADLs) as well as the use of special aids, the presence of certain conditions related to mental functioning, and questions pertaining to the ability to work. By these criteria, in 1995, an estimated 20.6 percent of noninstitutionalized civilians (53.9 million people) met the standards for disability as measured by the SIPP.
As expected, disability is not randomly distributed throughout the population. Figure 33.1 illustrates that women and girls are more likely to have disabilities (21.3 percent) than men (19.8 percent).
To understand this difference, it is important to realize that women live longer than men. The disability rates for men and women are fairly close until old age, when at 85 years of age and over, 59.3 percent of women compared with 50.2 percent of men are disabled. Both blacks and Native Americans have higher rates of disability than any other group both for males and females. Asian and Hispanic males and females have less disability than Native Americans, blacks, and whites. Women are more than twice as likely as men to be disabled by arthritis; men and boys are twice as likely as women to be disabled by learning disabilities or mental retardation.
Similar differences are apparent in other countries. In Great Britain, nearly 20 percent of the working-age population is disabled (Disability Rights Commission 2001). In Great Britain, disability rates increase with age. Women 85 years of age or older have higher disability rates than men; but in contrast to the United States, Asian and Asian British people have higher disability rates than the white population. In Australia, slightly more than 20 percent of the population report having a disability. Among people under the age of 65, 15 percent had a disability; of these, 54 percent were male and 46 percent female (Australian Institute of Health and Welfare 2002). As in the United States and Great Britain, disabled people in Australia are more likely to have lower income and less education, be unemployed, and be more socially isolated than the nondisabled population.
In the EU of 14 countries in 2000, Eurostat reports that about 13 percent of the population is disabled, again, with slightly more women than men being disabled (European Disability Forum 2001). Disability was measured by whether respondents reported that they had a “chronical, physical or mental health problem, illness or disability” and “whether they were hampered (severely or to some extent) in their daily activities by this problem.” As Figure 33.2 indicates, there are significant disparities in disability rates between countries.
For those citizens of these EU nations, the disability rate ranged from 21.1 percent of the Finnish population to only 7.4 percent in Italy. Listed from left to right, the illustrative countries in Figure 33.2 are France, Italy, Greece, Spain, Austria, Finland, and the average for the EU 14 countries. The EU commission reports that the reason for these differences is probably due to different cultural perceptions, levels of awareness, quality of services provided, and integration of disabled people into society. As in other industrialized nations, disability rates increase with age, and women 85 years of age and older have the highest disability rates. While the European social welfare states seem to provide a more complete safety net for disabled people than most other nations, disabled people in Europe nevertheless experience many forms of exclusion from society. Reliable national disability statistics are difficult to obtain for developing countries. However, from smaller studies, we know that disability is unevenly distributed in these societies; women are more likely to be disabled than men; disability rates increase with age; and lack of resources, constrained infrastructures, and experience of war contribute to increased disability rates (Hartley and Wirz 2002). For these reasons, disability rates in developing countries are likely to be even greater than those in industrialized nations, regardless of “official” reported statistics.
Cross-National Perspectives on Disability
In recent years, disability has become a global concern because the interconnectedness of the world and the virtual reality of newscasts visually brought disability issues into every life, home, and village. The tradition of hiding disability or ignoring it became impossible as disabled people entered public spaces and demonstrated for their civil rights, and famines, plagues, personal violence, and wars were brought into the public consciousness. Isolationist views of disability were also disrupted when the WHO placed huge energy and political capital into the worldwide ICF project aimed at measuring disability, comparing disability epidemiology within and across societies, and considering its consequences in every nation of the world.
Looking toward the future, the WHO and World Bank, in a collaborative effort, recognized that the burden of disability in emerging and developing countries 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, conceived to (1) develop internally consistent estimates of mortality from 107 major causes of death for the world and eight geographic regions, (2) estimate the incidence, prevalence, duration, and case fatality for 483 disabling sequelae resulting from those causes of death, (3) ascertain the fractions of mortality and disability attributable to 10 major risk factors, and (4) generate projection scenarios of mortality and disability for the year 2020 (Murray and Lopez 1996a:740). Analyses were undertaken by age, sex, and region of the world. To produce comparable findings across regions, researchers developed a composite measure called the disability-adjusted life year (DALY). This measure was constructed by summing the years of life lost from premature mortality plus years of life with disability, adjusted for severity of disability (Murray and Lopez 1996b). The DALY effort is part of a larger movement among epidemiologists, demographers, and economists to characterize active life years and health-related quality of life. The espoused intervention goals of this work are to produce more healthful environments and encourage more healthful behaviors so that disability can be postponed and compressed into the last years of life. Social policymakers and governments are keenly interested in such work as well, for the outcomes of longer lives and increasing years with disability of individuals in their populations have enormous consequences for the economy and social welfare obligations of the state.
An analysis of the leading causes of DALYs worldwide shows interesting changes over time and considerable differences between regions of the world. The data summarized in Figure 33.3 indicate these worldwide changes estimated through the analysis of multiple data sets and elaborated statistical models.
Across the world, the three leading causes of DALYs in 1990 were lower respiratory infections, diarrheal diseases, and conditions related to the perinatal period. Since this project is sensitive to mental health issues as well as physical conditions, unipolar depression proves to be a leading cause of disability. A more detailed analysis of the data show that an increasing global burden of disease and disability is attributable to obesity and physical inactivity and in Western countries is nearly equal to that of hypertension (Murray and Lopez 1996b). Projecting to the year 2020, infectious and communicable diseases are expected to be brought increasingly under control with international efforts recently sparked by the Ford, Carter, and Gates Foundations. Therefore, the top five causes of DALYs in 2020 are anticipated to be ischemic heart disease, unipolar major depression, road traffic accidents, and chronic obstructive pulmonary disease. The pulmonary conditions are thought to be the result of this century’s epidemic of tobacco-related diseases and air pollution. Extrinsic factors such as road traffic accidents, war, violence, and self-inflicted injuries will add to the disability toll. Now that HIV/AIDS (human immunodeficiency virus (acquired immune deficiency syndrome) is being recognized for the massive problems it produces and given the increased effectiveness of drug “cocktails” in managing the condition and prolonging life, many more people with AIDS will live longer but with disabilities.
There are marked differences between global regions in the prevalence and causes of disability. In general, disability prevalence seems to be highest in sub-Saharan Africa and lowest in market economies (Murray and Lopez 1997). In poorer regions, almost half of the disability is by caused by infectious and childhood diseases and injuries. In these nations, there is a high risk of disability among both the young and old. The disability problem in developing countries is exacerbated as wealthy nations export their high-risk jobs and work conditions. This trend has been exemplified by the recent controversies over work conditions in Nike plants in Vietnam and Indonesia, by the Bhopal chemical accident in India, and the widespread use of migrants working under relatively unregulated work conditions in many industrializing countries. A disproportionate amount of disability is experienced by the poor within and between countries. Even if people have means when they are disability free, the disability experience, discrimination, and social exclusion usually result in loss of jobs, lower wages, decreased support from the community or state, and inadequate health and welfare benefits to meet the needs of disabled people.
Cross-National Responses to Disability
Responses to disability are shaped by the values and culture of a society, notions of social justice, available resources, and the social welfare systems that are in place. These responses often reflect the compromises that are made between ideals and harsh reality. In laying out the fundamental rights of American citizens, for example, the Bill of Rights asserts that “all men are created equal.” The United States Constitution further guarantees that citizens will live in a political economic environment that is characterized by a democratic system in which the rights of the individual are respected and protected. This emphasis on the individual includes the right to vote, freedom of speech, the right to bear arms, representation in government, and freedom of religious belief. These fundamental values expressed in the Bill of Rights and the Constitution are wedded to a capitalist economy that emphasizes and rewards individual effort and theoretically permits persons to acquire education, accumulate personal wealth, and achieve a corresponding rise in social class (Thurow 1996). Thus, in principle, it is ideally possible for any person to become wealthy or president of the United States and for disabled people to live full and rewarding lives. In fact, this is often not the case for all kinds of reasons.
Through the years, American values have been remarkable for their consistency. In studying values from 1946 to 1976, Williams (1970, 1979) identified five sets of American values and characterized them as follows: (1) competitive achievement and success exemplified through activity, work, and practicality; (2) individual personality and value of the self anchored in ideals of individual freedom, equality, and democracy; (3) progress measured in terms of possession of material things and comfort; (4) humanitarian mores and moral orientation; and (5) nationalism, racism, feelings of group superiority, and an emphasis on isolationism. These values are compatible with earlier observations of American culture. De Tocqueville noted as early as 1877 that individualism promoted social isolationism and withdrawal of Americans from each other (de Tocqueville 1877), and Veblen (1899) observed as early as the nineteenth century that Americans were conspicuous consumers.
Research by Bengston, in California, between 1971 and 1986 indicates that the fundamental values discussed above are unlikely to change over time or across generations (Bengston 1989). In his study, the younger generation expressed higher levels of individualism and lower levels of humanitarianism than their grandparents, but the remarkable conclusion was that values remain relatively constant within and between groups. This conclusion is supported by considerable survey work on American public opinion over the last 50 years (Campbell et al. 1960; Page and Shapiro 1992). While there have been modifications in the expression of these core American values influenced by social and political circumstances over the last 200 years, the underlying values persist. Lipset (1991) notes, for example, that affirmative action was advocated as a compensation action for previous discrimination to allow minorities into the competitive capitalistic system and, second, that America stands out among Western nations in the low level of support it provides for poor and disabled people through its welfare and health care programs. Yet he concludes that these actions have not basically modified the emphases on individual success and equality of opportunity. When taken in concert, these studies and data suggest that the American value system is well defined and stable, stresses individualism and materialism, places emphasis on the individual’s work and accomplishments, favors members of the dominant group, and is suspicious of outsiders or those with differences.
One of the deep conflicts in American culture is embedded in the tension between valuing work, individual achievement, and competition in the marketplace, on one hand, and humanitarian activity and a desire to help those in need, on the other. These values and tensions have driven the American approach to dealing with disabled people. For generations, disabled people with all sorts of physical and mental impairments were defined as different, stigmatized, hidden from view, and often placed in institutions (Kurzban and Leary 2001). The state defined disability in terms of people’s importance in the political economy of the nation and gave benefits accordingly. The first disability legislation, for example, in the United States was the Pension Act of 1776, which provided compensation for service-connected disability during the Revolutionary War. The second piece of national legislation was the Disabled Seaman’s Act of 1798, which gave benefits to merchant seamen who were the economic lifeline of the country. Later legislation provided benefits for veterans of foreign wars and support for injured railroad workers and miners. Workmen’s compensation acts were then passed to benefit those who were disabled working in factories essential to manufacturing and transportation industries generated by the Industrial Revolution. Vocational rehabilitation (1916, 1920), social security (1935, 1946), disability insurance in the social security system (1956), and Medicare-Medicaid legislation, expanded health and disability benefits to women, the poor, elderly, and disabled are rather recent components of a disjunctive American welfare and disability system (Albrecht 1992).
The Rehabilitation Act of 1973 and the Americans With Disabilities Act of 1990 and their amendments are the bedrock of a system meant to provide protection, opportunities, care, and services to disabled people. This legislation, taken together, attempts to include disabled people into the larger society by addressing issues of discrimination; access to schools, jobs, and public places; and in helping disabled people live outside institutions. It is important to note, however, that these laws and their interpretations have been vigorously challenged in court by some local governments and private sector employers in an attempt to reduce increases in health and welfare costs. The private sector solution to disability in the United States has consisted of attempts to minimize government programs for disabled people, privatize social security in one form or another, and promote charity. The problem is that charity and gift giving to those in need do not provide an intact safety net for vulnerable populations. David Wagner (2000) points out, for example, that while the United States prides itself on being one of the most generous nations, it provides American citizens with the lowest public benefits of any Western society and has rates of poverty and inequality among the highest in the industrialized world. He argues that independent philanthropy provides a cover for the harshness of America’s free market capitalism. Whether his case is overstated or not, privatization of social security investments, heavy reliance on charity, and a cobbled-together, patchwork health and social welfare system do not provide reliable and comprehensive support for the vulnerable elderly and disabled populations, particularly in times of economic hardship.
By contrast, European nations, while also espousing democratic values, are more benign to those in need, have more comprehensive and complete health and welfare systems, manifest less extreme differences in income distribution in society, and have a stronger safety net for the unemployed, poor, women, children, and disabled people (Ardigó 1995). In a comparative study, Evans (1995) examined similarities and differences in public attitudes toward social assistance, full employment, minimum wage legislation, and the general principle of redistribution of income to make inequalities within a country less severe. He compared Australia, Switzerland, the Netherlands, Great Britain, West Germany, Austria, Italy, and Hungary with the United States on all four issues. He discovered that the United States is exceptional in that respondents in national surveys were generally less committed to redistributive welfare policies than respondents in any of the other nations. While he found some social class differences expressed in self-interest (the lower more than the higher social classes support income redistribution across all countries), the more important explanation for differences between the United States and other countries in attitudes toward redistribution of income were American beliefs that inequality is necessary for efficiency, that all Americans have an opportunity to get ahead, and that social position and connections are not important ways of getting ahead.
These attitudes expressing underlying values toward redistribution of income are reflected in actual income distribution in the United States and the major European countries. When comparing earnings dispersion for males over an 18-year period for France, Germany, Italy, Great Britain, Australia, Canada, Sweden, and Japan, Nickell and Bell (1995) found that income dispersion across workers is much larger in the United States than for any other country. Thus, attitudes, values, and actual income dispersion show very consistent patterns cross-nationally when comparing the United States with major European and other industrialized countries. The United States in all instances is more tolerant of inequality. American reformers have focused on these inequalities in calling for the development of a more communitarian approach to social policy (Etzioni 1996), the cultivation of a moral sense (Wilson 1993), and developing a new values framework for reconfiguring American health care (Priester 1992). Regardless of good intentions, the actual public opinion and behavior present a formidable challenge to disabled people. On a national level, increased life expectancy and disability prevalence among the elderly place enormous pressures on health and welfare systems. As in the past, the response of different countries will most likely reflect their underlying value structures, governmental systems, and economic capacities.
Much less is known about treatment of and support for disabled people in developing countries. Across history, some types of disabled people have been stigmatized and isolated more than others. In the tropics, individuals with Hansen’s disease (leprosy) were often taken from their communities and placed to live in leprosaria for the rest of their lives. Certainly in the history of slave trade, disabled individuals were not taken as slaves, but left behind as unfit (Patterson 1982). Slavers selected individuals who were physically strong or who were able to bear “healthy” children. People with serious mental illnesses were often excluded from the community and placed in “madhouses.” Today, many people with AIDS in developing countries are not able to afford expensive drug regimens; they spend the last years of their lives disabled and dying in their local communities, where families, volunteers, or missionaries care for them as best they can. Three of the most serious, emergent disabling conditions besides AIDS in contemporary developing countries are injuries due to land mines and war, respiratory conditions due to pollution and tobacco smoking, and traffic accidents as more of the world has cars, buses, and trucks.
Poverty and infrastructures broken by war add to the problem. As a result, disabled people in developing countries most frequently must rely on their families and local communities for support and care. This is a particularly severe problem in places where families have been torn apart due to AIDS or the ravages of war. In these instances, there often is no one to care for disabled people. That is why many think that AIDS is such a threat to countries in Africa and Asia. There are reports that over 20 percent of military and police forces have AIDS and entire villages are so affected by the condition that there is no one to plant crops and harvest them. Survival is an issue. This is why the World Bank and the WHO have been jointly looking at disability as being a barrier to economic development.
Implications and Conclusions
Measured by any standard, disability is a global social problem that is becoming more recognized as a threat to personal well-being, the capacities of health and social welfare systems, and the economies of entire communities and nations. Because of the salience of the problem, disability will emerge as a metaphor for other social problems (Smith 2001). For example, degradation of the environment, increases in the human population, and world poverty will be experienced through disabling conditions (Handler and Hasenfeld 1997).
Disability has provided a forum for the development and application of powerful technologies that will benefit large numbers of people (Brandt and Pope 1997). Universal design is a concept that calls for user-friendly physical and social environments that allow persons of all ages and conditions to live public lives, be able to access public institutions, and work in a relatively barrier-free world (Imrie 1996). The technologies developed to implement universal design benefit everyone. Kitchens and bathrooms designed to accommodate disabled people are safer and more convenient for all users. Ramps to houses and buildings provide children, the elderly, and those recuperating from accidents, injuries, or surgery with independence and access to a larger social world. Voice recognition software permits people to access a variety of computing devices, whether they are multitasking or not, in front of a traditional computer. They open up a new world to the visually impaired and those recuperating from illness in their beds. New tactile graphics programs allow students to learn over the Internet using multiple senses, as well as to aid the sensory impaired. New prosthetic and orthotic devices, such as artificial joints, and mobility devices, such as intelligent wheelchairs, make mobility easier for many.
The advocacy of disabled people symbolized by the Americans with Disabilities Act has redefined what it means to be a citizen (Charlton 1998). With rights come responsibilities. Disabled people have demonstrated that they want to be involved in decisions about their own lives and that they want to be responsible for themselves. This breeds a new type of independence. They argue that it is more humane to support people to live independently in the community than it is to exclude them and hide them in institutions. The economic costs are about the same, but the implications for disabled people and the elderly are immense. The public participation of a wide variety of people in social life redefines what it is to be human and a citizen. Disabled people are mobilizing their voices through the vote so that they along with the elderly (two overlapping sets of voters) can exert pressures on society to be more inclusive and to permit more diversity.
Disability raises questions of morality and ethics. On a national level, there is growing evidence that wealthy nations transfer the riskier jobs in their internal labor markets to immigrants or undocumented workers (Aday 2001). In other instances, entire manufacturing sections of the economy have been exported across borders where costs are low, work conditions are relatively unregulated, and disability risks are high. Examples are dangerous chemical plants that produced the Bhopal disaster in India, shoe-manufacturing plants, and sweatshop clothing and rug-manufacturing factories (Bloomberg News 1998). The question raised is: What is the morality of transferring risk and disability to the disenfranchised?
On an individual level, disability directly challenges notions of personal well-being and quality of life in terms of questions about eugenics, euthanasia, value of human life, and judgments of worth. There are raging debates under way regarding valuation of human life according to “objective” standards such as a person’s genetic structure, physical and mental capacity, dependency level, or external judgments of another’s quality of life. If these standards were to have been enforced uniformly in the past, there would have not been room in society for the likes of Socrates, Beethoven, Winston Churchill, Franklin Delano Roosevelt, John Fitzgerald Kennedy, Stephen Hawking, and Christopher Reeve (Scotch and Schriner 1997).
On a societal level, disability poses questions of discrimination, stigmatization, and exclusion (Bravemen and Tarimo 2002). There is debate now over what it is to be human, cultured, and a citizen. Who should be included in a society, and who should be excluded? These debates force deep discussions about value and worth. Are people to be judged on their capacity to produce work or income? Is a person’s value directly related to how much money he or she has or can earn or the color of their skin, their age, or their gender? What is the value of a poet, a mother, or spiritual leader? These debates are exacerbated by growing research on the personal experience of disabled people. When given the chance to speak, many disabled people speak eloquently to the value of their lives. Even when disabled persons are judged by external observers to not have a very high quality of life, many disabled people report that they do have high-quality lives and that maintaining a balance between body, mind, and spirit is what gives them peace, happiness, and quality of life (Albrecht and Devlieger 1999). These discussions have something to teach others about the meaning of social life. In sum, disability provides us an avenue for reexamining what it means to be a person and a member of society.