- Romel W. MackelprangRomel W. MackelprangEastern Washington University
Characteristics that we contemporarily define as disabilities have existed in the human population from earliest recorded history. Societal explanations for disability have varied greatly by time and populations in which disabilities have occurred. At various times in history, disability has been viewed as a blessing from deity or the deities, a punishment for sin, or a medical problem. Social workers have worked with persons with disabilities from the inception of the profession, and in recent years, social work has begun to embrace the concept of disability as diversity and to treat disability as diversity and welcome disabled persons as fully participating members of society. Social work has begun welcoming persons with disabilities as fully participating members of society, including valuable members of the profession.
- Health Care and Illness
- Populations and Practice Settings
- Social Justice and Human Rights
The United Nations estimated that 600 million people live with disabilities in the world today and that those numbers are expanding rapidly (World Health Assembly, 2005). At the turn of the 21st century, the U.S. government estimated approximately 55 million Americans, including 5 million children live with disabilities. One in five adults and three in four persons aged 80 years and older live with a disability (U.S. Census Bureau, 2000; Waldrop & Stern, 2003). Historically, disability has been defined as pathology contained within individuals. However, contemporary disability prevalence estimates acknowledge the social and societal contexts that influence people with atypical characteristics being considered disabled. As life expectancies increase and with technological advancements, the numbers and proportions of people living with disabilities will continue to expand including the thousands of wounded service people from the war in Iraq and Afghanistan.
Throughout history, societies have attempted to explain the place of disability in the social order. Neolithic tribes believed that disabilities were caused by spirits (Albrecht, 1992) and skull surgeries performed to release the spirits when the spirits were believed to be evil. Ancient Greeks believed disabled persons were not human and that they should be abandoned to die (DePoy & Gilson, 2004; Plato, 1991). Romans left children with severe disabilities to die but also provided assistance to persons with disabilities with expectation that they be appreciative and complacent (Morris, 1986). Concomitantly, not all disabilities were problematic, particularly those that did not manifest with physical differences. For example, Julius Caesar had epilepsy, known as falling sickness, and claimed that he had visions during his seizures. In Ancient Asia, disability was viewed similar to Western culture. Life with disability was viewed as substandard with people with disabilities often begging for sustenance. However, because religious vows of poverty were common in some parts of Asia, this activity may not have been viewed as negative as in Western culture. Both heroic and malevolent disabled characters are featured in ancient Asian history (Miles, 2002). Ancient Zoroastrian scripture dating back 2,500 years in Persia envisioned a perfect world without disabilities.
Judeo-Christian and Muslim histories portray disability negatively. The Koran displayed the deaf, blind, and “dumb” as being without understanding. The Old Testament forbade people with physical atypicalities and those of short stature from officiating in temple and priesthood ordinances. In the New Testament, blindness and other disabilities were believed to be caused by the sins of disabled people or their parents. Those with disabilities that we characterize today as mental illness were thought to be possessed by devils (Mackelprang & Salsgiver, 1999). However, disability was not universally condemned. For example, both the Koran and the Bible describe a significant speech impairment Moses lived with that did not disqualify him from leading the Israelites out of Egypt. The New Testament portrayed disability as arising from sin and spiritual deficiency. However, Jesus also displayed compassion for disabled persons, setting an archetype for subsequent charitable efforts in Western culture.
In the Middle Ages, disability continued to be explained in religious and supernatural terms in which disabled persons were out of harmony with god or the natural order of the universe. However, although moral explanations prevailed during the Middle Ages, there was no singular, unifying perspective (Metzler, 2006). When disability was attributed to demonic or evil influences, people were ostracized and sometimes burned at the stake. Concomitantly, many clergy espoused the belief that people with disabilities provided an opportunity for the nondisabled to display charity. People with leprosy were segregated to protect society physically and spiritually; however, some also believed lepers' infirmities help them to progress to salvation faster than others.
The Enlightenment era brought a new emphasis on rational inquiry that competed with morally based explanations of disability. As early as 1600, Francis Bacon refuted the idea that “madness” resulted from moral punishment (DePoy & Gilson, 2004). Disability from birth was considered a monstrosity, while disabilities acquired later were considered natural (DePoy & Gilson, 2004). Those injured in war were given special consideration and support. In Europe, blind persons were especially afforded higher status resulting from the wartime practice in which prisoners of war were blinded by their captors and allowed to return to their homes. This practice was considered a humane alternative to execution while neutralizing the captives' threat to the victors.
The Enlightenment coincided with industrialization and increased urbanization, all of which influence societal reactions to disability. As scientific inquiry increasingly supplanted religious and supernatural explanations of disability, medical and rational explanations began to supersede moral explanations of disability. The increased reliance on medicine brought increased emphasis on curing, or at least treating, biological inadequacies. Increasingly people's worth was measured by their ability to work and contribute to the economy. As contrasted to rural, agrarian societies, in which family and communities integrated those who were different, institutions that housed the unproductive, including people with disabilities, proliferated. The original intent of some of these organizations may have been to improve the dysfunctional, and lack of resources often turned into warehouses with subhuman conditions (Foucault, 2006).
The 1800s and the Victorian era brought increasing modernity and scientific advances in architecture, photography, health, and science. Charles Darwin's observations challenged perceptions about the nature and development of humanity. Inventions and advances produced optimism and professionals held great hope that “deviants” could be molded and changed to be more acceptable to society (Rothman, 1971). However, as the century progressed, social Darwinism and eugenics gained prominence. Darwin observed that biological natural selection benefited species, whereas, social Darwinists advocated eugenics, wherein social engineering would discourage undesirables from reproducing while promoting the proliferation of desired classes, primarily white, nondisabled, affluent people (Longmore, 1987; Trattner, 1999; Wiggam, 1924).
The 20th century ushered in an era in which the intellectual elite advocated for the elimination of the poor, nonproductive, and undesirable while advocating for the proliferation of those with desirable traits (Wiggam, 1924). Eugenics provided easy explanations for society's ills that justified laws forbidding interracial marriage, mandating sterilization of the disabled, and led to the proliferation of large institutions with degrading living conditions (Longmore, 1987; Mackelprang & Salsgiver, 1999).
In the first half of the 20th century, both moral and medical approaches to explaining disability were firmly entrenched in Western culture. Disability was shameful and people with disabilities were isolated. Professionals encouraged parents to institutionalize their disabled children. People with mental health disabilities were segregated in mental hospitals. People with mobility disabilities were denied access to public and private facilities. The 1924 (1927) U.S. Supreme Court decision in Buck vs. Bell (274 U.S. 200) legitimized forced sterilization of disabled persons. Eugenics policies embedded in western culture also provided impetus for the genocide of between 75,000 and 200,000 physically and mentally disabled people in Nazi Germany. Joseph Goebbels, Adolf Hitler's propaganda minister who was disabled from polio, nevertheless led the publicity effort portraying disabled persons as subhuman and incurable, justifying the T4 program in which their murders were defined as mercy killing and release by comfortable death.
Eugenics advocates differentiation between congenital disabilities and acquired disabilities. For example, World War I produced hundreds of thousands of veterans and civilians with disabilities in Europe and the United States, and responses to their needs reinforced and strengthened the concept of the worthy poor (British Broadcasting Corporation, 1999). Franklin D. Roosevelt was elected as president of the United States in spite of polio; however, he went to great lengths to hide his physical disability from the public. Increased survival rates of persons born with or acquiring disabilities, public responsibility to care for veterans disabled by wars, and technological advances led to increased awareness and attention to “treat” disabled persons.
In the early decades of the 20th century, disability rights' seeds were being planted. Longmore (2003) recalls the 1935 “league of the physically handicapped,” a small group of mobility disabled persons and their supporters who protested against job discrimination against those with disabilities. In the 1940s, such as researchers like Roger Barker and Beatrice Wright began demonstrating similarities between the experiences of disabled persons and other disenfranchised groups. By the 1960s, the tumultuous atmosphere that gave rise to the civil right movement for women and “minorities” also gave birth to the disability civil rights movement. Disability rights' leaders such as Ed Roberts and Judy Heumann, both polio survivors, contended they were denied access to education and employment because of societal barriers, and rejected arguments that they were unemployable because of their disabilities (Fleisher, & Zames, 2001; Mackelprang & Salsgiver, 1999; Shapiro, 1994). The Independent Living movement was founded on the premise that persons with disabilities are a minority group that lives in a primarily nondisabled society. The primary problems facing persons with disabilities are imposed by society rather than residing within individuals. Since the 1970s, the disability movement gained momentum and many successes by uniting people with different types of disabilities and aligning with the civil rights movement (Fleisher and Zames, 2001).
Legislation in the last century has had a marked impact on the lives of people with disabilities. In turn, expanded opportunities resulting from disability laws have changed public perceptions of disability and persons with disabilities. The followings are important disability laws from the last century.
1917—Smith-Hughes Act: Established Federal-State vocational rehabilitation program for disabled veterans.
1918—Smith-Sears (Soldiers Rehabilitation) Act: Expanded federal vocational rehabilitation programs to veterans of World War I
1920—Smith-Fess (Civilian Rehabilitation) Act: Began vocational rehabilitation for all Americans with disabilities.
1935—Made federal vocational rehabilitation programs permanent. Provided an income maintenance system to people who were unable to work. Included provisions for crippled children.
1968—Architectural Barriers Act: Required federally funded or utilized buildings to be accessible to the “handicapped.”
1973—Rehabilitation Act: Provided protections to people with disabilities in federally involved programs including hiring practices, architectural and transportation barriers, employment, education, and technology. This law did not apply to nonfederal entities such as private enterprises. It has been modified and updated multiple times in the three decades subsequent to its passage.
1975—Education for All Handicapped Children Act: Mandated free and appropriate education for children with disabilities, including services related to the disability (for example, speech, occupational, physical therapy).
1978—Rehabilitation Act Amendments: Provided for the establishment of federally funded Centers for Independent Living to be directed by people with disabilities.
1986—Amendments to the Education for All Handicapped Children Act: Entitled children with disabilities educational services from birth to six years of age.
1990—Americans with Disabilities Act: Civil rights law that mandate equal access and nondiscrimination in employment, public accommodations, telecommunications, and societal services (for example, insurance).
1997—Individuals with Disabilities Education Act: Strengthened the provisions of the Education for All Handicapped Children Act. This law was further modified in 2004 with the Individuals with Disabilities Education Improvement Act aligning IDEA with the No Child Left Behind Act and increasing equity and accountability in education for children with disabilities.
Originally, disability legislation targeted war veterans who were considered worthy of assistance for serving their country. Over time, legislation has expanded to include all citizens with disabilities. The most significant disability civil rights law is the Americans with Disabilities Act (ADA) of 1990 because it expanded the rights of the disabled to all areas of society whereas previous legislation such as Rehabilitation Acts applied only to governmental entities and organizations receiving governmental support. Some disability legislation such as the Social Security Act and education acts for children provide entitlements (cash benefits and services) for people with disabilities. In contrast, legislation such as ADA protect the rights of people with disabilities but do not provide entitlements or guarantee benefits.
In addition to legislation, disability policy is affected by the judicial system, particularly in the form of court decisions. In recent years, U.S. Supreme Court decisions have limited the scope and protections of the ADA. For example, in Sutton vs. United Airlines dismissed a disability discrimination case brought by two sisters for employment discrimination. The petitioners charged that defendant's policy requiring 20/100 uncorrected vision was discriminatory that excluded them from employment as airline pilots. Both petitioners had 20/200 vision that was correctable with corrective lenses. The court ruled that, because their vision was correctable, they were not covered under ADA, even though the airline's policy excluded them from employment. On the other hand, some recent decisions have expanded the rights of disabled persons. Among these is the 1999 Olmstead decision, in which the court determined that disabled people who are capable should be allowed to leave institutional care and live in the community.
The practice of combining people with diverse, unusual, or atypical characteristics as a unified group has been adopted primarily in the last century. By using tools such as the bell curve, one can plot normal human characteristics. Being normal became desirable and those who fall outside the normal and desired range of mental, physical, cognitive, and behavioral characteristics have been labeled abnormal and with terms such as cripple, spastic, invalid, and handicap. Terms such as differently abled have been used by some in an attempt to soften the negativity associated with disability. With the birth of the disability rights movement, the term disability has become increasingly accepted by disabled persons and nondisabled persons alike to describe those with atypical characteristics. Disability rights advocates use terms such as ableism and disableism to describe the belief that people with atypical characteristics are inherently inferior.
Given the traditionally derogatory nature of terms such as handicap and disability, “person first” language became widely adopted. Terms such as “person with a disability” became more acceptable than “disabled person” because of the belief that disabled persons are not defined by their disability; rather, disability is a characteristic they live with. However, in the 21st century, disability advocates and activists are increasingly eschewing person first language in favor of disability identity language. They argue that person first language fosters a belief that disability is inherently pathological rather than a characteristic of diversity. This rationale can be illustrated by applying person first language to other characteristics. African Americans and Caucasians do not want to be called “persons with blackness,” or “persons with whiteness.” Women and men do not want to be called “persons with femaleness” or “persons with maleness.” In the same way, some disabled persons are embracing disability as a characteristic and identity. Contemporarily, in 2007, person first language is the common choice in the United States while in England disability first language is more common. Use of language will continue to evolve over time with different countries, languages, and cultures adopting multiple and, at times, conflicting uses.
In the United States, Deaf culture can be identified by those who use American Sign Language as their primary language and method of communication, who identify Deafness as a cultural characteristic, and identify with other Deaf people as their primary sources of socialization. Culturally Deaf persons use language such as Deaf person with a capital D to connote Deaf culture and deaf person with a little D to signify deafness as an auditory condition. There seems to be an evolving trend in which disabled persons who identify with disability culture eschew person first language and may be beginning to use capital D Disability to refer to Disability culture and identity.
Models of Disability
Explanations of disability can be divided into three categories: the moral, medical, and social models. The moral and medical models define disability as a pathological individual characteristic. In contrast, the social model defines disability as a diverse attribute in society. The moral models have pervaded most societies and cultures while the social model is gaining increasing recognition. The moral model, which has been present from antiquity, explains that disability is a result of sin or is out of order with the natural order of existence. Disabilities may arise as a result of one's misdeeds or as a consequence of the sins or errors of one's family. The medical model regards disability as a defect or sickness that should be prevented, treated, or cured. The moral and medical models define disability as shameful and repulsive. Both models are common contemporarily and are evident throughout society. In the United States, people with severe disabilities are routinely forced to live in nursing facilities rather than select a community residence of their choosing. Contemporary media portray physical disability as a fate worse than death as demonstrated by the 2004 Academy Award–winning picture, Million Dollar Baby, which portrayed the murder of a severely disabled woman as heroic.
The birth of the disability rights movement in the 1960s has produced a contrasting approach to disability. The diversity model of disability (also known as the social model or disability model) defines disability as a naturally occurring phenomenon that adds to societal diversity. While acknowledging the impact of impairments and limitations on individuals, the diversity model of disability contends that the problems facing disabled persons arise primarily out of societal attitudes, structures, policies, and institutions that limit the full participation of disabled persons in society. Devaluation and discrimination exclude people with disabilities from reaching their potential. Problems such as unemployment rates of people with disability are caused, in part, by social policies such as the loss of health benefits that exclude them from the workforce.
Disability Theory and Contemporary Practice
With the emergence of the social model of disability, societal conceptualizations of disability are changing. World Health Organization [WHO] (1980) published the International Classification of Impairments, Disabilities, and Health (ICD) that classified disability, impairment, and handicaps as internal problems.
Impairment: Any loss or abnormality of psychological, physiological, or anatomical structure or function.
Disability: Any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.
Handicap: A disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfillment of a role that is normal, depending on age, sex, social, and cultural factors, for that individual.
The Americans with Disabilities Act (1990) also defined disability internally; however, it acknowledged that people with disabilities experience pervasive discrimination and lack of access to society. WHO (2001) began a multinational process that culminated in the development of the International Classification of Functioning, Disability and Health (ICF). While the ICF also attends to internal impairments and conditions, it also addresses activities and participation as well as environmental factors impacting disability. Thus, the ICF acknowledges that disability occurs in context, not as an exclusively internal pathological condition. From within the Disability movement and community, a unique disability perspective has recently developed that addresses disability as an identity and seeks to understand a culture of disability. This movement is evident in academia where Disability Studies programs are proliferating, Disability Studies journals have been created, and The Society for Disability Studies brings together disability scholars to discuss and debate Disability and Disability culture. Fashioned after ethnic and women's studies, disability studies have become a vital field of study and a new professional venue.
The emergence of the social model of disability produces new challenges for human behavior, social, and economic theorists. Traditional longitudinal theories that explain behavior over the lifespan have addressed disability as an impediment to meeting expected tasks or milestones. Social and economic theorists have approached disability in terms of the societal costs and social problems wrought by disabilities. Categorical theories that explain the world according to attributes such as social class, gender, sexual orientation, or race and ethnicity have typically eschewed disability. Disability theory is now being inculcated into a variety of traditional theoretical approaches to explaining the world and people in the world (DePoy & Gilson, 2004; Johnson, 2000; Longmore, 2003; Mackelprang & Salsgiver, 1999; May & Raske, 2005; McRuer, 2006; Priestly, 2001; Stone, 2005).
Universal design and universal access (UA) are important components of the disability rights movement. UA proponents contend that societies have generally been organized around the majority or those in power. Civil rights and special protections policies such as affirmative action and reasonable accommodation have been necessary to provide societal access to minorities and disadvantaged persons. UA, which began as an approach to improving disability access, is applicable to all people, majority and nonmajority. UA contends that society should be organized to encompass the diverse range of the population, not developed for the majority and that the responsibility for promoting diversity rests on everyone's shoulders. For example curb cuts and electric doors were originally designed for disabled people but benefit all people. Similarly, UA contends that other areas of society such as college admission and job requirements can be developed in a universally accessible manner rather than advantaging some groups over others.
People with disabilities continue to face discrimination and lack of access to the full benefits of society. A challenge for society and for social work is to promote disability rights, opportunities, and decision making.
Housing: The deinstitutionalization movement that began in the 1980s has reduced and prevented the warehousing of thousands; however, challenges remain. For many, resources did not follow people as they have left institutions, thus exposing them to higher risk. Thousands remain institutionalized unnecessarily despite policies and the Olmstead decision by the U.S. Supreme Court that mandated states to discharge eligible people with disabilities into the community. In addition, adequate housing is in short supply because of problems such as inaccessible and unaffordable dwellings. The social work ethical principles of self-determination and social justice obligate social workers to assist disabled persons in living independently to the extent possible. Passage of legislation such as the 2005 “Money Follows the Person” will facilitate independence for many disabled persons, but others will not have the educational or financial resources to take advantage. As of 2007, 31 states had demonstration projects to move more than disabled persons out of the institutions in which they were warehoused into the community (U.S. Department of Health and Human Services, 2007).
Income: The unemployment rate of people with disabilities is double the nondisabled population, and their individual and family incomes lag far behind. Social policies discourage disabled people from working including policies that eliminate health and social benefits for people with disabilities who are employed. Supplemental Security Income (SSI) provides disabled beneficiaries a subsistence, poverty level income. To qualify for Social Security Disability (SSD) benefits, an individual must have a substantial work history; thus, many people with disabilities, especially those born with disabilities, are unable to qualify.
Health Care: Forty-nine million Americans, including millions with disabilities, have no health insurance. Medicare is the primary source of health coverage for disabled people age 65 and older as well as those under 65 years of age who had a substantial work history prior to acquiring a disability that prohibits them from working. Nonelderly Medicare recipients must first receive SSD, then wait two years before they can receive Medicare. Medicaid, a federal and state program provides SSI recipients with health coverage; however, reimbursement rates limit access to some health services and benefits are frequently very limited in scope. Some disabled Medicare and Medicaid recipients do not work to the extent they can because earning an income would disqualify them from coverage and their health care needs are such that their income would not adequately compensate for the lack of coverage. For example an electric wheelchair can cost as much as $15,000, more than the annual income of individuals earning minimum wage. Social policies that expand health care coverage and end penalties for working are critical to increased independence, earning potential, and quality of life for disabled persons.
Independent Living: Traditionally professionals' relationships with disabled persons have been hierarchal. Medical professionals prescribe treatments. Social workers and other human service professionals often work as “case managers” for persons with disabilities; a term that implies that clients are cases to be managed. In contrast, independent living philosophy and centers for independent living place the participants in control of decisions and services they receive. While complete autonomy is not possible in all situations, it is incumbent on social workers to advocate for self-determination and assume control only when necessary.
Life and Death: Life and death policies and decisions are of major importance to persons with disabilities throughout the lifespan. Groups such as Not Dead Yet (http://notdeadyetnewscommentary.blogspot.com/) have been created to illuminate the perception that people with disabilities are more expendable than nondisabled persons. Prenatal testing is sometimes encouraged to ascertain the presence of a disability that would justify abortion, a practice some disability advocates consider genocidal (Davis, 2002; Johnson, 2005). Two 1989 “right to die” court cases illustrate the societal belief that disabled lives are worth less than nondisabled persons. David Rivlin, a 38-year-old quadriplegic from Michigan who had been forced to live in a nursing facility for years sought and received court sanction to end his life. Similarly, Larry McAfee a 34-year-old quadriplegic from Georgia who had also been forced to live in nursing facilities also received sanction to end his life. In both cases, the courts ruled that the petitioners' conditions were so abhorrent they should be allowed to die while ignoring the conditions in which they had been forced to live. Rivlin completed his suicide; however, independent living advocates facilitated McAfee's discharge and transition to community living. A year later he reported he was happy to be living (Mackelprang & Mackelprang, 2005; Shapiro, 1994). The public disability rights debate reached its zenith in 2005 with the public legal battles between the parents and spouse of Terry Shiavo, a woman who had been in a persistent vegetative state for 15 years. Shiavo's husband and health providers eventually prevailed, Shiavo's nutrition and hydration were discontinued, and she died. This case deeply divided the country including disability rights advocates, some of whom argued that Shiavo was murdered because she was disabled while others disagreed, contending that she was not conscious. However, though disability rights proponents disagree over the Shiavo case, all share the belief that disabled people should have the same life and death decisions that are afforded nondisabled persons. Concomitantly, however, extant social and health policies may consign people with disabilities to substandard lives. Social workers are responsible for advocating for universal access and quality of life and not assume that life with a disability is inferior to life without a disabilitylives.
Social Work Implications
The social work profession has a strong history of responsibility to work with and advocacy for the disadvantaged and oppressed in society. Social workers have worked in the disability arena for as long as the profession has existed at the micro and macro levels. Some of the earliest venues of social work practice include institutions for the “mentally retarded” as well as in mental health/ psychiatric facilities and community mental health. Because disability crosses all population groups, social workers in all areas of practice work with disabled persons. In addition, the profession is charged to advocate for equity and social justice. Thus, the profession has a responsibility to advocate for social policies and practices that provide the same opportunities for disabled persons as nondisabled persons.
In addition to the profession's commitment to nondiscrimination, and ending oppression, social work is also committed to diversity. The National Association of Social Workers (NASW) (2007) states “NASW is committed to social justice for all. Discrimination and prejudice directed against any group are damaging to the social, emotional, and economic well-being of the affected group and of society as a whole.”
In recent years, NASW has begun to recognize disability as diversity rather than a medical problem or pathology (Stoessen, 2003).
The Council on Social Work Education (CSWE) began transforming its approach to disability in the 1990s. Its 1994 accreditation standards defined disability as one aspect of human diversity. In 1996, CSWE created the Commission on Disability and Persons with Disabilities to complement its diversity commissions on race and ethnicity, women, and sexual orientation. In addition, in 2005 CSWE began seeking disabled persons to serve in organizational leadership positions alongside people from other diverse backgrounds.
Disabled social workers have always been part of the profession. In recent years, they are gaining recognition as a part of the diverse tapestry of society. Changes in laws and social policies, societal attitudes, as well as advances in technology and access to society are providing disabled persons new opportunities to participate fully in society. However, they still face significant social and economic problems. Social work faces three challenges related to disability. First, the profession has the responsibility to provide culturally competent services to disabled clients and groups. Second, social work's commitment to social justice compels it to advocate for nondiscriminatory laws, policies, and practices. Third, social workers need to promote client/consumer participation at the case, agency, and policy level. Finally, social work has the responsibility to embrace disabled persons as a vital part of the profession.
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