Disability

DISABILITY MODELS

GLOBAL ATTITUDES TOWARD DISABILITY

DISABILITY RESEARCH AND SOCIAL POLICY

BIBLIOGRAPHY

Disability, and what it means to be a disabled person, is socially, culturally, and historically created. Disability studies, and associated disability research, is a relatively recent and burgeoning arena within the social sciences. This entry shall first summarize the shift in understandings by contrasting the individual and social models of disability—a model being a set of assumptions about how an event or process operates. The entry then explores the implications of this shift in disability research and policy. Finally, the entry looks toward future possibilities in establishing the full participatory citizenship of disabled people.

DISABILITY MODELS

Within every society there are competing models of disability, with some being more dominant than others at different times. The most dominant model of disability is the individual model, which is based upon the assumption that the difficulties disabled people experience are a direct result of their individual physical, sensory, or intellectual impairments (Oliver and Sapey 2006). Thus, the blind person who falls down a hole in the pavement does so because he or she cannot see it, and the person with a motor impairment fails to get into a building because of his or her inability to walk. Problems are thus viewed as residing within the individual. The individual model of disability is deeply ingrained and “taken as given” in the medical, psychological, and sociological literature. Even in the literature on the sociology of health and illness, disability, as disabled people define it, is basically ignored (Barnes and Mercer 1996).

The medical model can be regarded as a subcategory of the overarching individual model of disability, where disability is conceived as part of the disease process, as abnormality, and as individual tragedy—something that happens to unfortunate individuals on a more or less random basis. Treatment, in turn, is based upon the idea that the problem resides within the individual and must be overcome by the individual’s own efforts (French 2004). Disabled people have, for example, been critical of the countless hours they have spent attempting to learn to walk or talk at the expense of their education and leisure (Oliver 1996).

None of these arguments implies that considering the medical or individual needs of disabled individuals is wrong; the argument is that the individual model of disability has tended to view disability only in those terms, focusing almost exclusively on attempts to modify people’s impairments and return them or approximate them to “normal.” The effect of the physical, attitudinal, and social environment on disabled people has been ignored or regarded as relatively fixed, which has maintained the status quo and kept disabled people in their disadvantaged state within society (Oliver and Sapey 2006).

The social model of disability is often referred to as the “barriers approach,” where disability is viewed not in terms of the individual’s impairment, but in terms of environmental, structural, and attitudinal barriers that impinge upon the lives of disabled people and that have the potential to impede their inclusion and progress in many areas of life, including employment, education, and leisure, unless the barriers are minimized or removed (Oliver 1996). These barriers include inaccessible education or lack of education, inaccessible information and communication systems, inaccessible working environments, inadequate or lacking disability benefits, discriminatory health and social-care services, and inaccessible transport, housing, public buildings, and amenities (Swain et al. 2004). The social model of disability also encompasses the tragedy model in all its manifestations, such as the devaluation of disabled people through negative images in the media, including films, television, and newspapers (Darke 2004).

The social model of disability locates disability not within the individual disabled person, but within society. Thus the person who uses a wheelchair is not disabled by paralysis but by building design, lack of lifts, rigid work practices, and the attitudes and behavior of others. Similarly, the visually impaired person is not disabled by lack of sight, but by lack of reading materials in Braille, cluttered pavements, and stereotypical ideas about blindness. The social model takes a holistic approach in that specific problems experienced by disabled people are explained in terms of the totality of disabling environments and cultures (Oliver 2004).

The social model of disability has arisen from the thinking and writings of disabled people themselves, and particularly from the disabled people’s movement. The disabled people’s movement comprises organizations of disabled people in which disabled people are in positions of control.

GLOBAL ATTITUDES TOWARD DISABILITY

The experiences of disabled people in the Western world gave birth to the social model of disability. It is an expression of commonality and resistance to the dominant individual, medical, and tragedy models. To look globally, however, raises a possibly more complex and controversial picture. On one hand is the social and historical construction of disability. To be impaired and disabled in China, in Afghanistan, in Zambia, or in the United States—in the high-income “developed” or minority world and the low-income “developing” or majority world—addresses widely differing experiences and encompasses different meanings. Perhaps not surprisingly, the picture is complex, including both cultural diversity and commonalities (Flood 2005; Sheldon 2005). Provision for disabled people also varies greatly from country to country. Most countries in the majority world, for instance, do not have a welfare state.

Though attitudes toward disability are generally universally negative, there are cultural differences (Ingstad and Reynolds Whyte 1995). First are the ways in which the body and physical characteristics are given value and meaning. Western biomedical definitions of impairment are not universal, and perceptions of the body and mind vary across cultures and also change over time (Hughes 2002). Religion and the messages various religious doctrines convey about disability are also significant (Ingstad and Reynolds Whyte 1995), as is language and the notion that key concepts may not easily translate into other languages and cultures (Stone 1999b).

Notwithstanding the importance of cultural differences, subtle and not so subtle, it can be argued that commonality is an overriding picture. Commonality is engendered particularly by multideprivation, predominantly through common experiences of poverty. Disabled people are the poorest of the poor in all countries, in terms of relative poverty in the developed world and in terms of absolute poverty in the developing world (Stone 1999a).

The establishment and growth of an international disabled people’s movement, particularly through the Disabled Peoples’ International (DPI), is in part at least an expression and realization of such commonality. As of 2007 DPI represented approximately 130 national assemblies, many of which, in turn, represent thousands of disabled individuals with all manner of impairments, including people with intellectual impairment. In 1992 DPI acknowledged that it was a human rights organization and that its membership was individually and collectively committed to global justice for disabled people. DPI is also committed to ensuring that the voice of disabled people is heard in the development of all policies and programs that directly affect them, a commitment expressed in the DPI slogan, Nothing About Us Without Us. As a result, DPI has had considerable influence in formulating the United Nations World Programme of Action Concerning Disabled Persons (1983) and the United Nations Standard Rules on Equalization of Opportunities for Persons with Disabilities (1993).

In 1992 DPI joined other international disability organizations to set up an international information network on disability and human rights with the objective of supporting disabled people’s actions at the grassroots to implement those rights. This network, Disability Awareness in Action, published a monthly newsletter, the Disability Tribune, from 1992 to 2005 and produces numerous resource kits on issues of particular concern, such as organization building, consultation and influence, campaigning, and working with the media (Hurst 2005).

DISABILITY RESEARCH AND SOCIAL POLICY

Turning to research, estimates of the number of disabled people are problematic given the variations in definitions of disability, both nationally and internationally, and the wide variety of associated impairments (Swain and French 2004). Estimates suggest that there are around 500 million disabled people in the world population. The majority, around 80 percent, of disabled people live in the developing world, the main causes of impairment being poverty, inadequate sanitation, malnutrition and a poor water supply, and more recently AIDS. Furthermore, statistics from European countries suggest that the percentage of the population that is disabled increases with age, particularly for certain disabilities such as visual impairment and hearing loss. Figures concerning comparative numbers of people in employment and education show that people with impairments are among the most disadvantaged groups around the world (Giddens 2006).

Such statistics are clearly important for disabled people, their supporters, service providers, and policymakers in establishing mandates for change. The development of the social model, however, has underpinned critiques of research, challenging who controls and produces research, priorities in funding, and ultimately the establishment of full citizenship for disabled people (Barnes 2004). Again, the central argument is that the individual model has dominated research. Negative impacts have also come from global genetic advances and assessments of disabled people’s quality of life, as well as multinational pharmaceutical companies’ hold over research, patenting, and genetic advances; the invisibility of disabled people from mainstream activity and information; and the silence of disabled people’s voices in the corridors of power and change (Hurst 2003). Statistics, whether valid or reliable, relating to the numbers of disabled people provide no information about the availability of accessible houses, transport, or so-called public buildings. Such counting of heads can carry the connotation that it is disabled individuals who create the “problem,” rather than the disabling society. The social model has fueled arguments for a different methodological approach to researching disability issues, an approach that is informed by the social model and in which the production of research is controlled by disabled people. Associated developments in social science research are generally subsumed under the umbrella term emancipatory research (Barnes 2004).

In terms of social policy, the international shift driven by the social model is evident in the establishment of rights-based policy, both civil and human. By 2007 antidiscriminatory legislation had been enacted in at least forty UN member states. There are, however, significant differences in these legislative frameworks, and general critiques focus on the lack of clear and effective enforcement mechanisms, with terms such as reasonable adjustment providing broad grounds for noncompliance—that is, antidiscriminatory legislation that allows for and legalizes discrimination against disabled people. Furthermore, the social model should not be simplistically equated with what has come to be referred to as the rights-based model. The social model encompasses and informs broader mandates for social change in realizing social justice for disabled people.

One broader front for social change has been developed under the banner of independent living (Barnes and Mercer 2006). This concept, as defined by disabled people themselves, is founded on four basic assumptions:

1. All human beings are of equal worth, regardless of the nature, complexity, or severity of their impairments.
2. Everyone, regardless of the nature, complexity, or severity of their impairments, has the capacity to make choices in controlling their lifestyles and should be supported in making such choices.
3. Disabled people have the right to exercise control over their lives.
4. Disabled people have the right to participate fully in all areas—economic, political, and cultural—of mainstream community living on an equal basis with their nondisabled peers.

The independent-living movement began through the establishment of centers for independent living (CILs), which are self-help organizations for disabled people that are run and controlled by disabled people themselves. There are now CILs or similar organizations providing support for disabled people and their families in many countries around the world. Furthermore, the idea of independent living, as conceived by disabled people, has had a notable impact on disability policy globally. Disabled people and organizations of disabled people have increasingly become involved in policymaking at local, regional, national, and international levels (Barnes and Mercer 2006).

Turning finally to the possible directions for disability policy and social science research, the goal remains essentially the same: the creation of a society in which all disabled people are able to participate as equal citizens. Under the umbrella of independent living, this includes equal access to mainstream education, paid employment, transport, “public” buildings, housing, leisure, and health-and social-care services. Mainstreaming is a key concept. The mainstreaming of disability issues within policy agendas addresses the marginalization of the needs and rights of disabled people and their treatment as “special” cases. This presents fundamental challenges to policymaking in realizing the prerogatives of flexibility, the expertise of disabled people, and the recognition that “one size does not fit all.” Mainstreaming also requires the breaking down of the physical, social, communicative, and economic barriers that prevent disabled people from exercising their rights and participating in policymaking.

The creation of participative citizenship will involve the strengthening and enforcement of legislation and procedures to ensure that disability and independent-living issues are fully integrated into policymaking at all levels: international, national, regional, and local. This includes the enactment of binding and intractable antidiscrimination legislation with effective enforcement and compliance requirements. The economic and management implications include the financing of organizations of disabled people, including CILs, and research controlled by disabled people, particularly organizations of disabled people and their representatives.

There are, furthermore, democratic and participatory possibilities afforded by the Internet and other technological developments. These technologies have opened up opportunities for dialogic, or participative rather than representative, democracy. The Internet allows a greater diversity of voices to be heard and has the potential to be profoundly democratizing. The danger is the possibility of the further marginalization of the “unconnected,” the disabled people who are the poorest of the poor, for whom survival is the political perspective and for whom sophisticated technology is not available. It is also the case that new technologies are developed within disabling societies and are not available to many disabled people unless adaptations are made that are often expensive (Goggin and Newell 2003).

Overall, paramount to the evolving direction is the emerging voices of disabled people in controlling decision-making processes across policy and research that shapes day-to-day lifestyles, opportunities, and choices. It is an ongoing struggle for a truly equitable and inclusive society with justice and full participative citizenship for all.

SEE ALSO Civil Rights; Human Rights; Social Exclusion

BIBLIOGRAPHY

Barnes, Colin. 2004. Reflections on Doing Emancipatory Disability Research. In Disabling Barriers—Enabling Environments, ed. John Swain, Sally French, Colin Barnes, and Carol Thomas, 47–53. 2nd ed. London: Sage.

Barnes, Colin, and Geoffrey Mercer, eds. 1996. Exploring the Divide: Illness and Disability. Leeds, U.K.: Disability Press.

Barnes, Colin, and Geoffrey Mercer. 1997. Doing Disability Research. Leeds, U.K.: Disability Press.

Barnes, Colin, and Geoffrey Mercer. 2006. Independent Futures: Creating User-led Disability Services in a Disabling Society. Bristol, U.K.: Policy Press.

Darke, Paul Anthony. 2004. The Changing Face of Representations of Disability in the Media. In Disabling Barriers—Enabling Environments, ed. John Swain, Sally French, Colin Barnes, and Carol Thomas, 100–105. 2nd ed. London: Sage.

Flood, Tara. 2005. “Food” or “Thought”? The Social Model and the Majority World. In The Social Model of Disability: Europe and the Majority World, ed. Colin Barnes and Geoffrey Mercer, 180–192. Leeds, U.K.: Disability Press.

French, Sally. 2004. Enabling Relationships in Therapy Practice. In Enabling Relationships in Health and Social Care, ed. John Swain, Jim Clark, Karen Parry, et al., 95–108. Oxford, U.K.: Butterworth-Heinemann.

Giddens, Anthony. 2006. Sociology. 5th ed. Cambridge, U.K.: Polity.

Goggin, Gerard, and Christopher Newell. 2003. Digital Disability: The Social Construction of Disability in New Media. London: Rowman and Littlefield.

Hughes, Bill. 2002. Disability and the Body. In Disability Studies Today, ed. Colin Barnes, Mike Oliver, and Len Barton, 58–76. Cambridge, U.K.: Polity.

Hurst, Rachel. 2003. Conclusion: Enabling or Disabling Globalization. In Controversial Issues in a Disabling Society, ed. John Swain, Sally French, and Colin Cameron, 161–170. Buckingham, U.K.: Open University Press.

Hurst, Rachel. 2005. Disabled People’s International: Europe and the Social Model of Disability. In The Social Model of Disability: Europe and the Majority World, ed. Colin Barnes and Geoffrey Mercer, 65–79. Leeds, U.K.: Disability Press.

Ingstad, Benedicte, and Susan Reynolds Whyte. 1995. Disability and Culture. Berkeley: University of California Press.

Oliver, Michael. 1996. Understanding Disability: From Theory to Practice. London: Macmillan.

Oliver, Michael. 2004. If I Had a Hammer: The Social Model in Action. In Disabling Barriers—Enabling Environments, ed. John Swain, Sally French, Colin Barnes, and Carol Thomas, 7–12. 2nd ed. London: Sage.

Oliver, Michael, and Bob Sapey. 2006. Social Work with Disabled People. 3rd ed. Basingstoke, U.K.: Macmillan.

Sheldon, Alison. 2005. One World, One People, One Struggle? Towards the Global Implementation of the Social Model of Disability. In The Social Model of Disability: Europe and the Majority World, ed. Colin Barnes and Geoffrey Mercer, 115–130. Leeds, U.K.: Disability Press.

Stone Emma. 1999a. Disability and Development: Learning from Action and Research on Disability in the Majority World. Leeds, U.K.: Disability Press.

Stone Emma 1999b. Modern Slogan, Ancient Script: Impairment and Disability in the Chinese Language. In Disability Discourse, ed. Marian Corker and Sally French, 136–147. Buckingham, U.K.: Open University Press.

Swain, John, and Sally French. 2004. Researching Together: A Participatory Approach. In Physiotherapy: A Psychosocial Approach, ed. Sally French and Julius Sim, 317–331. 3rd ed. Oxford, U.K.: Elsevier.

Swain John, Sally French, Colin Barnes, and Carol Thomas, eds. 2004. Disabling Barriers—Enabling Environments. 2nd ed. London: Sage.

John Swain

Sally French

Disability

Where Do Disabilities Come From?

Disability and Self-Image

Disability and Health

Myths About People with Disabilities

People with Disabilities and the Community

Resources

Disability is a potentially limiting difference in the functioning of the human body. Disabilities can influence both the physical and mental well-being of a person, and they can have a strong impact on self-esteem and social adjustment.

KEYWORDS

for searching the Internet and other reference sources

Chronic illness

Congenital disorder

Handicap

Disability is a deviation from the normal range of functioning that places a limit on what a person can do or that imposes special conditions or needs that must be met to allow a person to function in the normal range or up to his or her full capacity. Disabilities can be mental, physical, psychological, or a combination of all three. The disability may be obvious to the casual observer, such as the loss of a leg, or invisible, such as a back injury. Some people prefer to refer to anyone whose range of function falls outside the norm as “differently abled,” to stress that the condition is a difference rather than a lack of completeness. Many people with so-called disabilities do quite well meeting the challenges of life.

Where Do Disabilities Come From?

People can be born with a disability. When this happens, it is called a congenital (kon-JEN-i-tal) disability. In many cases, the cause of a congenital disability is unknown. Some disabilities with known causes are:

• Inherited disabilities: Some disabilities are the result of genetic* disorders, for example, cystic fibrosis*.

* genetic

pertains to genes, which are the chemicals in the body that help determine physical and mental characteristics, such as hair or eye color. They are inherited from a person’s parents.

* cystic fibrosis

is an inherited disease of the body’s mucus-producing glands that usually appears in early childhood. It mainly affects the respiratory and digestive systems and can lead to difficulty breathing and infection in the lungs because of an accumulation of abnormally thick mucus in the airways and lungs.

• Exposure of the mother to disease during pregnancy: For example, a mother who has rubella* early in pregnancy may have a child who is deaf or who has other birth defects.

* rubella

also called German measles, is a viral infection that causes a rash and fever.

• Exposure of the mother during pregnancy to alcohol, drugs, harmful medications, pollutants, or chemicals: For example, if a mother drinks during pregnancy, she may have a child with fetal alcohol syndrome*.

* fetal alcohol syndrome

which occurs if the fetus is exposed to alcohol, is a condition that can be associated with mental, physical, and behavioral differences. Oppositional behavioral problems, learning difficul-ties, mental retardation, and retarded growth can occur in the children of women who drink alcohol while they are pregnant.

• Difficulties arising during the birth process: Complications can arise during the delivery of a baby, for example, the loss of an adequate oxygen supply to the brain, which can lead to brain damage and mental retardation.

Some people hold superstitious beliefs that birth defects are punishment for the sins or evils done by the parents or that they occur because the mother has been cursed during pregnancy. Although these ideas are clearly false, people with disabilities and their families sometimes must confront these unfounded beliefs in themselves and in others.

Disabilities also can be acquired at any time after birth. Acquired disabilities commonly arise from accidents, illness, working conditions that expose a person to an unhealthy environment (such as coal miners who breathe in coal dust), or repetitive physical stresses (such as repeated heavy lifting).

Disability and Self-Image

Self-image is the mental picture we have of ourselves, including our external appearance, our intellectual abilities, our strengths, and our weaknesses. This mental picture begins to develop in infancy and continues to grow and change throughout life. People develop their mental pictures through their interactions with other people and the world around them. Self-esteem is strongly linked to self-image. Self-esteem is the value that people put on the mental image that they have of themselves.

Self-image and congenital disabilities

Children who are born with a disability do not realize immediately that they are different from anyone else. Generally, children start to become aware of physical differences in human bodies, such as differences in hair and skin color, body size and shape, and gender, by their second year of life. Over time, children with disabilities realize that they are in some way different from most other people. At first this difference is neither good nor bad to them. Since congenitally disabled people may have never lived in a non-disabled body, they often feel complete, intact, and “okay” with the disability, even though the outside world may view them as different. Children whose parents accept them, support them, show pride in them and their abilities, and communicate factually and directly about the disability are more likely to develop good self-image and self-esteem.

When parents of children with disabilities encourage them to change and act more like “normal” people, hide their limitations, or dwell on things that they cannot do, the children may feel frustrated, unaccepted, and disappointed at not living up to their parents’ expectations. When they are faced repeatedly with other people’s negative reactions to their limitations, people with disabilities may come view themselves negatively and develop a poor self-image.

The conflict between “owning” a disability and making it part of oneself versus trying to get rid of the disability to become more like other people can be seen in the current debate in the deaf community about cochlear (KOK-lee-ar) implants. When these devices are installed surgically in a deaf person’s inner ear, they allow some deaf people to hear, but not like “congenitally hearing” people do. On one side of the debate are people who were born deaf and who are comfortable with their deafness. They see deafness and deaf culture as part of their identity, and they do not want to change. On the other side are those deaf people who believe that it is in their best interest to enter the mainstream of hearing people, if that is possible.

Self-image and acquired disabilities

People who acquire disabilities later in life have a different experience from those who are born with a disability. These people have lost something that has played a part in the development of their self-image, whether it is an arm or leg or the ability to perform a particular activity. People with acquired disabilities tend to go through a grieving process similar to the grieving process for any other major life loss. Their emotions usually follow these stages: grief, denial, anger, depression, working out a new way to live, and acceptance of the disability. Unfortunately, some people get stuck on one or more of these steps and may never reach the last two steps.

Self-image and chronic illness

Chronic illness is a special kind of “disability.” There are different kinds of chronic illnesses. Some illnesses, like diabetes*, often can be managed by the family doctor without hospitalization or pain. Others, such as back or neck injuries, can severely limit activities and may require treatment for pain with medications that may have some undesirable side effects. Progressive chronic illnesses, such as muscular dystrophy* or Alzheimer disease*, get worse with time and eventually can lead to death earlier than expected.

* diabetes

(dy-a-BEE-teez) is a condition in which the body is unable to take up and use sugar from the bloodstream normally to produce energy. It is caused by low levels of insulin (the hormone that controls this process) or the inability of the body to respond to insulin normally.

* muscular dystrophy

(DIS-trofee) is a group of inherited disorders that causes muscle weakening that worsens over time.

* Alzheimer (ALTS-hy-mer) disease

is a condition that leads to gradually worsening loss of mental abilities, including memory, judgment, and thinking, as well as changes in personality and behavior.

Some people with chronic illness may go through repeated periods of anger, sadness, and depression. They may become frustrated and angry at their caregivers or feel inadequate and embarrassed by the extra burden they place on loved ones. Several studies have shown that males have more emotional problems when they are faced with chronic illness than females, although researchers are not sure why this is true. It should be stressed that chronic illness does not necessarily result in chronic problems with self-image. Most people with chronic illness would not consider themselves disabled, and generally, with good health care and family support, they deal effectively with their illnesses.

In the middle of his career, artist Chuck Close became partially paralyzed due to a blood clot in his spinal column. To continue painting, he developed a technique that allowed him to work with his weakened hands from his wheelchair. He is still able to create the large, multicolored portraits for which he is known. A/P Associated Press

Disability and Health

Most physicians and mental health practitioners agree that there is a connection between mental health and physical well-being. In general, the better a person’s self-image and self-esteem, the more able a person is to cope with life’s ups and downs and the better a person feels both mentally and physically.

Many studies have found that people with disabilities experience psychological problems (especially depression and anxiety) and behavior problems at about twice the rate of the non-disabled population. Family members of people with disabilities are also more likely to experience emotional problems brought on by the extra responsibilities, financial burdens, and limitations of caring for someone with a disability. Though chronic illness and disability include the risk of psychological problems, most individuals and families learn to cope with these conditions.

In 1996, the American Academy of Pediatrics reviewed many studies of people with disabilities and concluded that certain risk factors increase the chance that people with disabilities will experience psychological problems. Other “protective” factors appear to decrease the chance that a person with a disability will have psychological problems.

Risk factors that increase the likelihood of psychological problems include:

• chronic illnesses that are painful, unpredictable (like seizures), or embarrassing
• “invisible” disabilities (because people may feel stressed by wondering if they should tell others about their limitations)
• disabilities that require a schedule of time-sensitive special treatments
• poor social skills and a rigid personality
• failure of loved ones and professionals to talk honestly with the person about the disability
• failure of parents to address sexuality in teens with disabilities
• allowing the disability to become the focus of family life
• fighting between the parents or break-up of the parents’ marriage
• overprotectiveness on the part of parents or caregivers.

Factors that decrease the likelihood of psychological problems include:

• family acceptance of the disability
• strong bonds within the family that help the family work together
• open and direct communication about the nature of the disability and what to expect
• balancing of family needs with the needs of the disabled person
• good social skills and plenty of social interaction
• appropriate expectations of accomplishments
• a strong support network in the community.

Myths About People with Disabilities

Non-disabled people often are ignorant about the reality of life for a person with a disability. Some of the false beliefs people with disabilities frequently encounter include:

Myth: Disabled people are usually mentally retarded.

Reality: Most disabilities do not affect intelligence.

Myth: Disabled people are sick.

Reality: Illness is not the same as disability. Some people are disabled with chronic illness, while others are healthy.

Myth: People with disabilities can never have a good quality of life.

Reality: The quality of life mainly depends on the character of a person and society’s acceptance of a person than on the disability itself.

Myth: People with disabilities need continuous supervision and cannot lead independent lives.

Hundreds of wheelchair racers gather for the International Games for the Disabled, 1984. Peter Arnold, Inc.

Reality: The degree of independence a person achieves depends on the nature of the disability, the person’s education and training, and the accommodations that are available to make independent living physically possible.

Myth: People with disabilities are especially noble, brave, and courageous for coping with their handicaps.

Reality: There are all kinds of people with disabilities. Most disabled people carry on with their lives just as non-disabled people do.

People with Disabilities and the Community

The Americans with Disabilities Act is the federal law that is intended to integrate people with disabilities into mainstream life as much as possible. It requires that disabled people be provided with access to public and private spaces and with workplace accommodations and, whenever possible, that they be included in mainstream public education. Although physical accommodations, such as wheelchair-accessible restrooms or Braille instructions for the blind on automatic teller machines, are common in new buildings, many older facilities and private spaces still have not been renovated to accommodate people with physical disabilities.

Employers are increasingly willing to make workplace accommodations for people with physical disabilities, but they are still fearful of making such arrangements for people with emotional disabilities. The unemployment rate among disabled people, especially disabled women, is very high, and many people with disabilities are employed at jobs below their skill levels. Service industries hire more people with disabilities than any other type of employer. Ignorance on the part of the non-disabled is still the greatest barrier to achievement of their full potential for people with disabilities.

People with disabilities face some common challenges. At the same time, disabled people are also individuals with differing characters and needs. People who are born with a disability have self-image issues that are different from those of people who acquire a disability later in life. Someone who is confined to bed with a chronic (long-term) illness faces challenges that are different from someone who is healthy but who has a disability such as blindness or mental retardation.

Although researchers can draw a group picture of people who are disabled, this picture does not represent an individual with a disability any more accurately than a general picture of the “average American” represents a non-disabled person. Our society must learn to see people with disabilities as individuals, each with his or her own strengths, weaknesses, hopes, and dreams, before people with disabilities can achieve full equality.

See also

Body Image

Chronic Illness

Self-Esteem

Resources

Book

Kent, Deborah, and Kathryn A. Quinlan. Extraordinary People with Disabilities. New York: Children’s Press, 1997. Profiles of more than 50 people with various disabilities.

Organizations

Center for Disability Information and Referral, Indiana Institute on Disability and Community, 2853 East Tenth Street, Bloomington, Indiana 47408-2696. This organization, which is associated with Indiana University, provides referrals for all types of disabilities. They also have an educational website for disabled and non-disabled children. Telephone 812-855-9396 http://www.iidc.indiana.edu/~cedir

disAbility Online, a website provided by the United States Department of Labor, addresses work and education-related disability issues. The site includes a state-by-state resource guide. http://www.wdsc.org/disability

Disability

The presence of disability in popular culture has taken many forms; indeed, people with disabilities (PWDs) have appeared frequently across the pop-culture spectrum: movies, television, print media, dance, theater, music, and sports. Disability representations have never been in short supply, though many produced by the mainstream cultural industries remain questionable at best, hurtful and divisive at worst.

Images of disability have perhaps found their most frequent expression in movies, with the vast majority created from the perspective of able-bodied filmmakers and intended primarily for able-bodied audiences. The earliest silent movies, each only a few minutes long, tended to portray PWDs as comic figures given to pursuing others or being pursued themselves, as in The Legless Runner (1907), The Invalid's Adventure (1907), and Don't Pull My Leg (1908). As the medium matured, moviemakers borrowed heavily from such nineteenth-century literary fare as Moby Dick, A Christmas Carol, Notre Dame de Paris (The Hunchback of Notre Dame), Treasure Island, and The Two Orphans, to create more intricate narratives that portrayed disabled people either as innocent victims or incarnations of evil. The films in this tradition included Orphans of the Storm (1921), The Hunchback of Notre Dame (1923, but many versions made since), The Sea Beast (1926), and numerous adaptations of A Christmas Carol. The 1930s saw a continuing interest in such stereotypical extremes—most notably in Moby Dick (1930), Charlie Chaplin's City Lights (1931), Todd Browning's famous gallery of grotesques, Freaks (1932), and a 1939 remake of Hunchback. Such images began fading during the World War II era in favor of relatively realistic and sensitive portraits of disabled veterans. Pride of the Marines (1945) and Bright Victory (1951) both dealt with blinded ex-servicemen; real-life veteran Harold Russell, whose service legacy was to lose his hands (replaced by metal hooks), played himself in The Best Years of Our Lives (1946), and Fred Zinnemann's The Men (1951), Marlon Brando's first film, dealt with paraplegics. These images, in turn, began giving way to famously larger-than-life civilians who "triumphed" over their disabilities: opera singer Marjorie Lawrence and Franklin D. Roosevelt, both polio victims, in Interrupted Melody (1955) and Sunrise at Campobello (1960) respectively, Helen Keller, deaf, dumb, and blind, in The Miracle Worker (1962). Stanley Kubrick's Dr. Strangelove (1964), however, mocked these latter types with its title character, and signaled their temporary demise.

With alarming regularity, Hollywood has continued churning out regressive disability movies such as Hook (1991), The Fugitive (1993), Speed (1994), and Forrest Gump (1994), reflecting the ageold practice of linking evil or innocence with disability, but an increasing number of films since the 1960s have offered positive images. Hollywood has often reserved the most resonant and poignant portrayals for disabled Vietnam veterans, as in Coming Home (1978), Cutter's Way (1981), and Born on the Fourth of July (1989). Other memorable, if not entirely progressive, films since the 1960s include The Other Side of the Mountain (1975), The Elephant Man (1980), Children of a Lesser God (1986), Rain Man (1988), and Scent of a Woman (1992), which range over a variety of afflictions and film styles.

Despite its relatively short history, the television industry has also demonstrated an interest in portraying the disabled experience, with a number of series presenting disabled characters in continuing roles. Gunsmoke's mobility-impaired sidekick Chester Goode, played by Dennis Weaver for nine seasons (1955-1964) during the program's 20-year run, competes with Raymond Burr's wheelchair-dependent police detective on Ironside (1967-1975), as television's most popular disabled character, while James Franciscus played a blind insurance investigator on Longstreet (1971-1972). Taking a different approach, nuclear-powered prostheses and implants turned disabled figures Steve Austin (Lee Majors) and Jaime Sommers (Lindsay Wagner) into the title characters of The Six Million Dollar Man (1974-1978) and The Bionic Woman (1976-1978), respectively. Later, LeVar Burton played the blind chief engineer Lt. Geordi LaForge in Star Trek: The Next Generation (1987-1994) and a string of follow-up movies.

Most of these films and TV programs featured able-bodied actors playing the disabled characters, a situation that some disability activists have likened to the now discontinued practice of white actors masquerading in blackface as African Americans or Shakespeare's Othello. Actors with actual disabilities have been employed only sporadically in the film and television industries, but their influence continues to rise. Some old-line actors, such as Sarah Bernhardt, Harold Lloyd, Herbert Marshall, and Lionel Barrymore, tended to mask their disabilities before the cameras (Barrymore's performance in the 1946 film It's a Wonderful Life is a notable exception), but for more recent actors, their disabilities became part of the characters they played. Harold Russell, whose hands were blown off in a demolition exercise, won two Oscars for his work in The Best Years of Our Lives, and Marlee Matlin, a hearing-impaired performer, won an Oscar for her role in Children of a Lesser God (1986) and went on to play bank-robber-turned-mayor Laurie Bey in the final years of the acclaimed TV series Picket Fences. Chris Burke, a developmentally disabled actor, co-starred as Corky Thatcher on the popular drama Life Goes On during its 1989-1993 run, and wheelchair-user Nancy Becker Kennedy played a sharp-tongued secretary on The Louie Show in 1996. Mitch Longley, a wheelchair-using heartthrob who once modeled shirts for Ralph Lauren, appeared as Byron Pierce on the soap opera Another World during the 1991/92 season and, beginning in 1997, played the double role of Dr. Matt Harmon and Eric Mancusi on the long-running soap opera, General Hospital, and its spin-off, Port Charles.

Longley is only one of several PWDs who have also made inroads into the modeling field. One of the most famous, wheelchair-user Ellen Stohl, posed nude for the July 1987 issue of Playboy, making her that magazine's first disabled centerfold, while runway models now have PWDs among their ranks, including Kitty Lunn and Kim Barreda. A number of American corporations, such as McDonald's and K-Mart, have begun using disabled performers in their commercials. A prime example is The Home Depot, which has featured disabled employees Henry Gibson and Dan Brady in its ads.

Since the latter decades of the twentieth century, PWDs have taken a more direct role in the creation of a pop-culture presence. Ron Kovic, a disabled Vietnam veteran who wrote the searing autobiography, Born on the Fourth of July, in 1976, also co-wrote the screenplay, in which he was played by Tom Cruise, for the like-titled movie in 1989. Three years later, Neil Jimenez wrote and co-directed The Waterdance, a film modeled largely on his own experiences as a newly disabled person. Billy Golfus, who suffered brain damage during a 1984 vehicular accident, eventually secured funding through the Independent Television Service to produce When Billy Broke His Head … and Other Tales of Wonder in 1995. This documentary film told not only his story but also the "tales" of other PWDs and their struggles for civil rights. Disabled journalist and poet Mark O'Brien collaborated with Jessica Yu on Breathing Lessons: The Life and Work of Mark O'Brien (1996), an Oscar-winning film for best short-subject documentary and a recipient of a special National Educational Media Network award. In 1992, Greg Smith founded On a Roll, a nationally syndicated radio talk show dedicated to disability issues, while John Hockenberry, a two-time Peabody Award-winning TV network correspondent, shared his perspectives about life as a disabled person in a 1995 memoir, Moving Violations, and in his oneman show, Spokesman, produced off-Broadway in 1996. Christopher Reeve, whose spinal cord was severed in a 1995 horseback-riding accident, directed a one-hour AIDS drama in 1997 titled In the Gloaming, and served as an executive producer for the 1998 TV remake of Hitchcock's Rear Window, in which he played the James Stewart role of a wheelchair-bound man who witnesses a murder across the courtyard of his apartment building.

Many other PWDs have contributed to the performing arts. Among the more notable are three singers who happen to be blind: Ray Charles and Stevie Wonder, who have enjoyed long careers as popular musicians; and Andrea Bocelli, who crossed over from opera to become something of a pop sensation. The National Theater of the Deaf, a mixed troupe of hearing and deaf actors founded in 1965, has performed across the country and on national TV. Mary Verdi-Fletcher, a wheelchair-user born with spina bifida, founded the Cleveland Ballet Dancing Wheels, a group of dancers with differing degrees of mobility that has given hundreds of performances on several continents.

PWDs have had their greatest successes in the literary field, with memoirs and poetry volumes. Nancy Mairs' Waist-High in the World (1996) and Kenny Fries' anthology Staring Back (1997) are prominent among the countless examples. The influence of the disability press has also grown appreciably, with New Mobility, The Ragged Edge (formerly The Disability Rag), and Mouth playing crucial roles.

In the world of sports, the Paralympic Games typically attracts thousands of amateur athletes and delegates from more than a hundred countries and are by far the most famous of competitions for PWDs. Among professional athletes, Monty Stratton pitched professional baseball for a few seasons in the 1940s despite having lost a leg in a 1938 hunting accident. He went on to supervise The Stratton Story (1949), a movie based on his life, which starred James Stewart. Despite a congenitally deformed hand, Jim Abbott enjoyed several seasons as a Major League pitcher and threw a no-hitter for the New York Yankees in 1993. In the National Football League, New Orleans Saints place kicker Tom Dempsey, born without a right hand and only half a right foot, used that foot to kick a 63-yard field goal against the Detroit Lions in 1970, a NFL record that stood unmatched for 28 years. Casey Martin, a professional golfer with a rare and painful birth defect in his right leg, made headlines in early 1998 by suing the PGA Tour and winning the right to ride in a cart while participating in the pro golf tour.

Of all pop-culture arenas, comic-strip art is decidedly the most problematic as regards the treatment of disability. Berke Breathed's syndicated cartoon strip Bloom County and its wheelchair-using Vietnam vet, Cutter John, are among the high points, but the field has generally been dominated by cartoonists such as Charles Addams and Gahan Wilson, long known for their "sick-humor" takes on such topics as blindness, deformity, and dismemberment. Their work arguably paved the way for John Callahan's repellent Hustler cartoon images and Gary Larson's skewed view of disabling conditions in his near-legendary strip, The Far Side.

Despite the excesses of comic-strip art and certain other media, however, the pop-culture representation of disability is constantly advancing. As more and more PWDs get involved in the creation of popular culture, the images can only improve.

—Martin F. Norden

Further Reading:

Cumberbatch, Guy, and Ralph Negrine. Images of Disability on Television. New York, Routledge, 1992.

Fries, Kenny, editor. Staring Back: The Disability Experience from the Inside Out. New York, Plume, 1997.

Gartner, Alan, and Tom Joe, editors. Images of the Disabled, Disabling Images. New York, Praeger, 1987.

Hockenberry, John. Moving Violations: War Zones, Wheelchairs, and Declarations of Independence. New York, Hyperion, 1995.

Klobas, Lauri E. Disability Drama in Television and Film. Jefferson, McFarland, 1988.

Mairs, Nancy. Waist-High in the World: A Life Among the Nondisabled. Boston, Beacon Press, 1996.

Norden, Martin F. The Cinema of Isolation: A History of Physical Disability in the Movies. New Brunswick, Rutgers University Press, 1994.

DISABILITY

Science and technology are pursued for human benefit. But the particular benefits of scientific research and technological development are the result of human activities embodying various cultural, economic, and ethical frameworks as well as the perspectives, purposes, and prejudices of any given society and of powerful groups within it. One group that should benefit includes disabled people. But such benefit will in large measure depend on the governance of science and technology, the involvement of disabled people themselves in their governance, and on the very concept of disability, an issue that is more contentious than commonly recognized. With regard to science, technology, and disability, there are at least two ethical issues that deserve more consideration than they are usually given: What perception of disabled people guides scientific research and technological development? What role do disabled people play in this process?

Solutions Follow Perceptions

Science and technology for disabled people depend on how so-called disabilities and disabled people are perceived. Definitions of disability range from the biomedical and economic to the liberal, social-political, minority rights, and universalist models (Penney 2002). These may nevertheless be reduced to three main perspectives:

The medical individualistic perspective (MP) sees disabled people as patients in need of being treated so that their level of functioning and appearance approaches that of the so-called non-disabled people (the norm). It assumes that disabled people perceive themselves as patients, and their own biological reality as defective or subnormal. It promotes the use of science and technology for the development of normative therapies for disabled people.

The transhumanist perspective (TP) is similar to the medical perspective with the modification that it sees both disabled and non-disabled people as patients. The human body in general is judged to be defective and in need of indefinite enhancement. Even normally existing abilities are subject to being raised above the norm or complemented with new abilities. The transhumanist (or posthumanist) perspective does not accept a given norm, and thus does not accept the subnormal/normal distinction between the disabled and non-disabled. The human body in general is seen as subnormal and in need of scientific-technological enforcement. It is no accident that Ray Kurzweil, inventor of the computer voice synthesizer the Kurzweil Reader for the blind, is also a strong proponent of transhumanist technological transformations for everyone.

The social justice perspective (SP) does not see disabled people as patients in need of treatment or enhancement so much as society in need of transformation. It assumes that most problems faced by disabled people are not generated by their non-normative bodies or capabilities but by the inability of society to fully integrate, support, and accept individuals with different biological realities and abilities. The social justice perspective encourages the use of science and technology to alter the physical environment so that disabled people may more easily interact with non-disabled people. The focus is on social, not medical, cures.

The social perspective also allows able-ism to be seen as analogous to racism or sexism, with able-ism constituting a network of beliefs and practices that yield a particular kind of self and body (the corporeal standard) that is then projected as the perfect, species-typical, and therefore essential and fully human. From the viewpoint of able-ism, disability becomes a diminished state of being human.

The social perspective on disability does not deny that disabled people possess certain biological realities (such as having no legs), which make them different in their abilities and cause them to deviate from a norm. However, it views the "need to fit a norm" as the main problem, and questions whether all deviations from the norm require a medical solution (adherence to the norm). Maybe in some cases a social solution (change or elimination of norm) would be just as appropriate. Neither does the social perspective deny the existence of symptomatic acute medical problems that should be treated. It simply questions the increasing medicalization of non-normative characteristics and sees many so-called diseases, defects and impairments not as acute medical problems but as societal constructions (Wolbring 2003b). It questions whether medical solutions are always the best response.

Scientific research and technological development may emphasize fixing the disabled (on an MP basis); science and technology may also seek to enhance the disabled (on a TP basis). Or technology especially can be used to reconstruct the world in ways that allow the disabled to interact freely with others without altering their biological identity/reality (on an SP basis). "Barrier-free access" is, for example, an SP program.

Society has a long history of adopting the MP approach to seeing disabilities. Many legal instruments describe a disabled person as someone with subnormal or diminished functioning in need of special care. They do not see disabled people as having a biological reality leading to different sets of abilities, different ways of functioning and different needs. The medical understanding of disabilities is essential for the acceptance and market-ability of many scientific and technological applications such as genetic and non-genetic prebirth testing and genetic and non-genetic therapies and enhancements.

However, this traditional focus is being replaced by a transhumanist focus on science and technology as a means to not just meet norms but to enhance existing abilities and add new ones. It is becoming increasingly difficult to draw a line between therapy and enhancement. If one believes someone is defective without legs, and finds it acceptable to develop artificial legs that function like normal biological legs restoring the normative characteristics of walking (medical cure), one has a hard time justifying the denial of artificial that improve on the natural capabilities of biological legs (running faster, jumping higher) and that might add capabilities beyond the scope of normal biological legs such as climbing walls (transhumanist enhancements).

Scientific and technological research with an SP justification to develop software and hardware that allows the usage by clients with the widest range of abilities is rare. This reflects the fact that most product development is geared toward the largest common denominator in the market so as to ensure the highest profit. Products are seldom developed for disabled people because their numbers are not big enough to make a profit. Without a change in social policies and dynamics, this will not change significantly. In the United States, the Americans with Disabilities Act (ADA), which resulted from the lobbying of the disabled as a public interest group, created a new market for barrier free access and other technological developments.

Roles For Disabled People

Can disabled people influence the indicated dynamics? Do they have to accept the medical or transhumanist perspectives on disabilities? Is it possible for them to promote the social justice perspective?

The disabilities rights movement and emergence of disability activism in the early 1980s provides one kind of answer to such questions (see Shapiro 1994). Disabled persons, no matter how they are defined, worked together in ways that led, in the United States for instance, to passage of the Americans with Disabilities Act (ADA) of 1990, the focus of which was on changing the environmental parameters of the lives of disabled people. However the ADA has been siege ever since its passing, and although it was somewhat successful with access issues, the ADA does not sufficiently cover emerging technologies; nor has it decreased the development of technologies that focus on the medical perception of disability. An increase of the presence of disabled persons among the ranks of scientists, engineers, and ethicists would be another means of more specifically influencing scientific and technology policy.

Certainly some negative consequences of science and technology can be avoided by integrating ethics into the governance of science and technology. But what kind of ethics? Ethical guidelines are not always free from biases that reflect the perspectives, purposes, and prejudices of the most powerful social groups. Much debate about science policy and the legal regulation of technology appears to accept the medical perspective of disability, with some qualified influence of the transhumanist perspective, but little appreciation of the social justice perspective (see, e.g., Harris 2000; Singer 2001; UNESCO 2003; and Wolbring 2003a and 2003c). One of the most effective ways for disabled persons who might object to this situation to counter it is to themselves become involved in policy national and international formation.

At the same time, disabled persons need not shy from inviting non-disabled people of power to ask themselves the following questions:

• Does scientific and technological decision making lead to further marginalization of disabled people?
• Does scientific and technological practice allow disabled people to freely choose their self-identity?
• Do science and technology by themselves have similar impacts on disabled and non-disabled people?
• Does the transhumanist perspective force non-disabled people to enhance their abilities and does it encourage society to make these new abilities eventually the new norm ("normative creep") that makes society less accepting of differences?
• What policy guidelines are needed to promote science and technology for the common good in an inclusive society?
• How the governance of science and technology be made more inclusive and diverse?

GREGOR WOLBRING

SEE ALSO Bioethics;Informed Consent;Medical Ethics.

BIBLIOGRAPHY

Albrecht, Gary L.; Katherine D. Seelman, and Michael Bury, eds. (2001). Handbook of Disability Studies. Thousand Oaks, CA: Sage. A collection of thirty-five articles on the shaping of disabilities studies, experiencing disability, and disability in context.

Barton, Len, ed. (2001). Disability Politics and the Struggle for Change. London: David Fulton. Twelve essays on disability, mostly in the British context.

Harris, John. (2000). "Is There A Coherent Social Conception of Disability?" Journal of Medical Ethics 26(2): 95–100. Harris denounces the social justice model of disability and the claim that disability is a medical issue.

Johnston, David. (2001). An Introduction to Disability Studies, 2nd edition. London: David Fulton. A synoptic overview of disability studies in both the United Kingdom and United States.

Shapiro, Joseph P. (1994). No Pity: People with Disabilities Forging a New Civil Rights Movement. New York: Three Rivers Press. A journalistic account of the disabilities civil rights movement in the United States that led to the passage of the Americans with Disabilities Act (1990).

Singer, Peter. (2001). "Response to Mark Kuczewski." American Journal of Bioethics 1(3): 55–57. Singer denounces the social jusice model of disability and a disability rights aproach to bioethics issues.

Wolbring, Gregor. (2003a). "Disability Rights Approach to Genetic Discrimination." In Society and Genetic Information: Codes and Laws in the Genetic Era, ed. Judit Sándor. Budapest: Central European University Press. Uses the three models (MP, SP, TP) together for the first time and shows that anti-genetic discrimination laws are discriminating against disabled people. Provides examples of disability discrimination within the usage of advances of human genetic interventions .

Wolbring, Gregor. (2003b). "The Social Construct of Health and Medicine." Health Ethics Today 13(1): 5–6. Looks at the social construction of health and medicine.

Wolbring, Gregor. (2003c). "Disability Rights Approach towards Bioethics." Journal of Disability Policy Studies 14(3): 154–180. Shows that the ethical divide that approves the prohibition of sex selection while allowing disability (MP) deselection is untenable. Questions the two-tiered ethical approach of medical versus social reasons

INTERNET RESOURCES

Harris, John. (2000). "Is There A Coherent Social Conception of Disability?" Journal of Medical Ethics 26(2): 95–100. Available from http://www.ncbi.nlm.nih.gov.

Penney, Jonathan. (2002). "A Constitution for the Disabled or a Disabled Constitution? Toward a New Approach to Disability for the Purposes of Section 15(1)." Journal of Law and Equality 1: 83–94. Available from http://www.jle.ca/files/v1n1/JLEv1n1art3.htm.

Penney, Jonathan. (2002). "A Constitution for the Disabled or a Disabled Constitution? Toward a New Approach to Disability for the Purposes of Section 15(1)." Journal of Law and Equality 1: 83–94. Describes different possible models and perception of disability and disabled people. Available from http://www.jle.ca/files/v1n1/JLEv1n1art3.htm

UNESCO. (2003). "Report of the IBC on Pre-implantation Genetic Diagnosis and Germ-line Intervention." UNESCO Publication SHS-EST/02/CIB-9/2 (Rev. 3) Paris, 24 April 2003. Available from http://portal.unesco.org./shs/en/file_download.php/1f3df0049c329b1f8f8e46b6f381cbd1ReportfinalPGD_en.pdf. This report sees disability totally within a medical framework. It advances the notion that preimplantation genetic diagnostic and germ-line interventions are ethically permissible if done for medical reasons. It denounces sex selection on the grounds that intervention is done for social reasons.

disability Which one of us is not disabled or ‘challenged’ in some aspect of our physical or mental capacity? The spectrum of human ability is wide, and it is on their capabilities that people with a disability would like society to focus.

Definitions

There is no single commonly-accepted, straightforward definition of disability. The subject is complex and controversial. Three of the main sources for definitions of disability are the medical, social, and legal models. The medical model uses the World Health Organisation (WHO) definition. The WHO (1980) outlines the relationships between impairment, disability, and handicap. The simplified working definition is called the International Classification of Impairments, Disabilities, and Handicaps (ICIDH). It uses these terms to describe the inter-relationship, aiming to achieve consistency in the meaning and use of the labels. The focus is on functional difficulties.
A disease, disorder or injury produces an impairment causing a change to ordinary functioning. Impairment refers to failure at the level of organs or systems of the body. This means loss or abnormality of psychological, physiological or anatomical structure or function. A disability refers to the resulting reduction or loss of ability to perform an activity in the manner considered normal for a human being e.g. climbing stairs or manipulating a keyboard. A handicap is a social disadvantage resulting from an impairment or disability which limits or prevents the fulfillment of a normal role.

This medical model demonstrates an interplay of factors acknowledging that grey areas requiring interpretation are acceptable within the definition. For purposes of assessment, quite often what matters is not the medical condition but the accompanying decrease or loss of function resulting from a disability.

The social model separates a person's specific impairment from his or her disability. In this approach, ‘a person with an impairment becomes ‘disabled’ when the organization of the society in which they live excludes them from mainstream activities’ (Employers' Forum on Disability). The Royal College of Physicians stresses the need to consider disability in the context of ‘a disabled person's encounter with daily living, the environment and society, not only in specific circumstances, but in the whole of that experience’. This then can meet the needs of individual differences and concentrate on the external, reversible factors. Clarifying ‘barrier-free’ policies for everyone rather than ‘special case’ policies for people with labels creates a more dynamic approach.

The third model incorporates the legal aspect and includes the rights of the individual. The current UK Disability Discrimination Act (DDA), 1995, was introduced to progress individuals beyond the limitations of the 1944 register for disabled people and the quota system. The Act states that a person has a disability for the purposes of this Act if he has: ‘a physical or mental impairment which has a substantial and long term adverse effect on his ability to carry out normal day to day activities.’ The purpose of this legislation is to protect individuals with a disability which makes it difficult for them to carry out ordinary, routine, day to day activities. The disability can cover physical, sensory, or mental faculties. It must be substantial and last or be expected to last for at least one year. The Act requires employers with 15 employees or more to make ‘reasonable provision’ for disabled workers.

Interpretation

The definitions above utilize the words ‘normal’ and ‘reasonable’ which are of course wide open to interpretation, escalating to contentious and litigious argument whenever the financial stakes are high. This frequently results in queries around settlement of legal, industrial, discriminatory, or insurance claims, assessment for medical aid, supply of high-tech equipment, provision of expensive prostheses, and access to special facilities, including education. Allocation of these increasingly expensive, sophisticated, and necessarily limited resources always hinges on the assessment of the degree of disability. Thus, whatever the formal definition, it is crucial to relate the disability to the level of purposeful functioning. For example, a short-sighted person might meet one test for disability, whilst with corrective lenses few would regard his myopia as a disability. Yet, if the myopia was severe or seriously progressive, no one would argue that this visual problem or partial sight did not constitute a disability, a handicap, and an impairment. A significant disability like blindness does not prevent a senior politician from performing a leading role, although he has to find creative ways and support to overcome the functional handicaps of his impairment. A relatively minor impairment, the loss of a finger to a violinist or of a thumb to a labourer, would be both a major disability and an occupational handicap — although not so to a majority of lecturers or teachers. Many people manage life well with asthma, but for a plasterer this would signal a major life and job change.

The definitions given generally refer both to physical disabilities and to mental health problems. Care is needed with respect to the latter, since many people appear ‘normal’ and also cope well much of the time, although in practice their day to day functioning can be seriously affected. Mental illness is therefore at risk of going undetected, with the individual consequently deprived of the necessary support until significant inappropriate behaviour is displayed. The reasons are a combination of the invisible nature of the disability, the not infrequent lack of a formal diagnosis, and the poor level of awareness of mental health issues amongst the healthy population.

Disabled people do not form a static or easily-identified group distinct from the rest of society. Some impairments improve with time while others are exacerbated. There are disabilities that are invisible, like diabetes, dyslexia, hearing loss, and mental illness. People not born with impairments can acquire them through accident or illness, and others born with them may gradually deteriorate.

What becomes important is not the label, though in some cases like dyslexia (specific learning difficulties) the label is important in gaining access to resources, but the assessment of loss of function in the context of employment and of day to day living.

Assessment

When it comes to assessment for resources and state benefits, few of the disabled person's rights depend on what the condition is called. Rather, the allocation of the benefit or service depends on the effect of the disability on day to day life. Someone with a severe facial disfigurement, not deliberately acquired, may not have a named disability but can suffer severe embarrassment and social stigma to such an extent that there is a long-term adverse effect and considerable handicap. They would be defined as a disabled person under the DDA.

Within health assessments, it is common to distinguish between two levels of activities of daily living (ADL): basic ADL are those that are essential for all aspects of self care; instrumental ADL are those activities such as shopping, housekeeping, and using private or public transport that are necessary for someone to maintain a level of independent living, especially in the absence of a carer.

The purpose for which the results are to be used is a necessary prerequisite in making an assessment. If, for example, the information is for inclusion in a survey this would necessarily be less stringent than for access to a facility or resource.

Objective assessments attempt to measure disability in a standardized form to provide information for individual health care, educational access, job requirements, and legal rights. Health professionals may use a variety of structured approaches from screening questionnaires to diagnostic tools involving physical tests. Psychometric tests can also be used for assessments. They have to be reliable and valid and can be used to measure ability, aptitude, reasoning, and aspects of personality.

It is appropriate to allow for self- as well as observer-based assessments. The person most likely to know the constraints and possibilities of their condition is the individual, who may also be one of the best sources for describing creative solutions to get around the difficulties. Self-assessment together with objectivity from health or support workers is likely to provide a realistic picture of limitations and potential.

In general, assessment gives an indication of need, can help with prediction of problems, and can give measures of outcome and output. Any system of assessment needs to be reliable, valid, sensitive to change, acceptable, relevant, realistic, and practical to use.

Perceptions

There is a strong need to combat bias and to dispel preconceptions in any review of disability. The disabled want the focus of their social relationships and medical interventions to be on their capabilities as far as that is reasonably possible. They wish to be accepted within society on an equal footing with equal rights. Typical situations include the doctor who addresses the carer rather than the individual, implying a perceived inability to communicate. Or, an employer may assume that disability will be an insuperable burden, dismissing the potential and commitment of the individual, in ignorance of the practical experience that disabled workers are frequently highly motivated, effective workers with good attendance records. Disabilities obviously can impose restrictions; but the goal many want as a right is unprejudiced, unfettered, and equal opportunity to demonstrate their creativity and their capability to function in day to day life and work.

Information

For the newly injured or diagnosed access to good information is crucial to dealing successfully with the trauma. The obvious sources are the institutional ones (hospitals, social services, and relevant government bodies). At the next level are the organizations usually related to particular conditions or lobby groups. Frequently, informal support groups have developed precisely because there may be limited practical support and information available. These can usually be accessed via helplines or the media. Other sources include:(i) the Disability Rights Handbook, updated annually, published by Disability Alliance Education and Research Association;(ii) the Internet;(iii) the local library;(iv) special Olympics and sporting organizations;(v) the DDA information line;(vi) Ability, ‘The computer magazine about disability issues’;(vii) The Employers' Forum on Disability.

Marian Borde