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In its deliberations on the Americans with Disabilities Act, Congress cited a figure of 43 million Americans as having one or more physical or mental disabilities. This estimate has been revised to 53 million based on recent census data. These numbers are broad estimates. It is clear, however, that the number of people who have disabilities in the American population is large and is growing significantly with the "graying of America."
The incidence of disability rises sharply as individuals reach their sixth and seventh decade of life. The life expectancy of an infant born in America today is approximately 75 years, and by the time that infant reaches the age of 75 that horizon of longevity may well have been pushed back. Advances in medical practice such as the development of trauma care centers and treatment of life threatening diseases tend to increase rather than decrease incidence of disability among younger persons.
Just as aging Baby Boomers are compelling a re-defining of what it means to be middle aged or older -- with all of the implications that flow from such a redefinition -- the disability rights movement and its supporters are advancing a redefinition of what it means to be disabled in this society on the eve of the 21st Century.
Historically, as author Hugh Gallagher notes, people with disabilities have been viewed as sick people who somehow never get better. They are medical failures. Disability is seen as a fate worse than death. Persons with disabilities have been hidden away in attics or institutions of confinement, or, in the worst case, killed. There is almost a primal fear of becoming disabled in this and other cultures, the fear of becoming part of the "other," the fear of loss, the fear of losing power, control and function.
This fear, mostly never articulated, leads people to feel uncomfortable around people with disabilities. Non-disabled people find ways to pity those with disabilities, to treat them as "special," or as extraordinary "overcomers." Or even to somehow find ways to deny a disability exists.
In our society, people with disabilities are mostly on the margins. They are perceived as individuals with a problem, a "victim" who has "suffered" a "tragedy." Individuals with disabilities are considered objects of pity and charity, persons (barely) who cannot work or be expected to take a full role in society. They are a burden (often resented) to be carried by their families or on public welfare assistance.
As Gallagher writes, "Almost every family has a crippled member; almost everyone has a friend or loved one with a crippling condition. Disability is, after all, a common condition of life. Most people, sooner or later, become disabled in one manner or another." People with disabilities come from all races, all classes. The U.S. Census Bureau estimates that there are over 54 million Americans with a disability -- that's one in five, or 20 percent. And some scholars believe that number is too low (they believe the percentage is over 30) because the Census relies on self-selection or self-identification -- and many people are believed to avoid identifying themselves as being disabled.
But people with disabilities, for the most part, are not sick; they just happen to have a disability. Yet, at the end of the 20th Century, people with disabilities still are viewed predominantly through medical model lenses; they are considered "patients."
What is "a disability?"
"Most people believe they know what is and is not a disability," says Deborah Kaplan, Director of the World Institute on Disability. "If you imagine
'the disabled' at one end of a spectrum and people who are extremely physically and mentally capable at the other, the distinction appears to be clear. However, there is a tremendous amount of middle ground in this construct, and it's in the middle that the scheme falls apart."
Things like facial scarring, "although they cause little or no functional or physical difficulty for the person who has them, constitute major social disabilities.
"Stigma and stereotypes [play a large role in] other disabilities, such as mild epilepsy and not having a 'normal' or acceptable body size," says Kaplan.
What distinguishes a socially "invisible" impairment - such as the need for corrective eyeglasses - from a less acceptable one - such as the need for a corrective hearing aid, or the need for a walker? Functionally, there may be little difference. Socially, some impairments create great disadvantage or social stigma for the individual, while others do not. Some are considered disabilities and some are not.
The Americans with Disabilities Act's definition
The United Nations' definition
The U. N. uses a definition of disability that is different from the ADA:
"If you stop looking at (people with disabilities) as medical cases," says Gallagher, "and instead see them as a minority group in the civil rights sense, certain things become clear. The disabled are a minority, functioning in a non-disabled society and for a long time and in many ways they have been denied the civil rights which others take for granted." And, as with most minorities, a "movement" has formed and begun to grow, a movement focused on the common experiences and needs of persons with a disability. The disability movement has a civil rights vision at its center, a vision of an accessible society, a society in which they will have equality of opportunity, rights and responsibilities.
Another way of looking at people with disabilities is emerging as a new reality challenges the old perceptions. People with disabilities are moving into mainstream society. Students with disabilities are getting real educations, not merely "special" education. Adults with disabilities are working as lawyers, teachers, journalists -- even as doctors. They are marrying and having families. Laws such as the Americans with Disabilities Act, the Individuals with Disabilities Education Act and the Air Carriers Access Act have begun to knock down barriers that keep people with disabilities from equal opportunities to participate in the affairs of society.
"People vary across a whole spectrum of infinitely small gradations of ability with regard to any given function." says Professor Robert Burgdorf Jr., one of the drafters of the original bill that became the ADA. " And the importance of any functional skill varies immensely according to the situation: a computer programmer doesn't need vision, but a bus driver does.
The definition of disability in the ADA reflects a recognition of the social construction of disability -- by including coverage for persons who are "perceived by others" as having a disability.
The U.S. Equal Employment Opportunity Commission's ADA Title I Technical Assistance Manual provides the following explanations of how this prong of the definition is to be interpreted:
PREVALENCE OF DISABILITY
The National Health Interview Survey (NHIS) and the Survey of Income and Program Participation (SIPP) are the two most widely used sources of survey data to describe the population of individuals with disabilities. The data from the Disability Supplement to the NHIS currently is being analyzed by a number of researchers.
The 1994 National Health Interview Survey estimated that 15 percent of the noninstitutionalized civilian population--some 38 million people--were limited in activity due to chronic conditions (Adams & Marano, 1995).
The Institute of Medicine interpolated the NHIS data to indicate that 38 percent of disabilities were associated with mobility limitations, followed by chronic disease (32 percent); sensory limitations (8 percent); intellectual limitations (7 percent); and all other conditions (15 percent) (Pope & Tarlov, 1991).
The SIPP identified 48.9 million persons who reported themselves as limited in performing functional activities or in fulfilling a socially defined role or task. Of these, 24.1 million persons were identified as having a ``severe disability'' (Kraus, L. E., Stoddard, S. & Gilmartin, D. (1996). Chartbook on disability in the United States, 1996. An InfoUse Report. Washington, DC: National Institute on Disability and Rehabilitation Research.). Both surveys excluded persons in nursing homes or institutions, who would be expected to have a high rate of disability. Including that population through extrapolation has led to the commonly cited figures of 43 to 48 million Americans with disabilities.
Both the NHIS and SIPP focus on limitations in major life activities, due to a physical or mental condition, but also provide data on persons who are limited in or unable to perform activities of daily living (ADLs)--such as eating, bathing, dressing, toileting, or transferring--without assistance or devices, or to perform instrumental activities of daily living (IADLs)--such as basic home care, shopping, meal preparation, telephoning, and managing money. Approximately eight million people reported difficulty with ADLs, and approximately four million with one or more ADLs needed the assistance of another person (McNeil, J. M. (1993). Americans with disabilities: 1991-92. U. S. Bureau of the Census. Current Population Reports, Washington, DC: U.S. Government Printing Office.).
The range of these estimates--from approximately 4 million people who need help simply to sustain their lives to the nearly 40 million who report any kind of activity limitation--illustrates the danger in discussing the disabled population or its needs as a homogeneous group. More refined data are needed to assess the needs for medical and health care, vocational rehabilitation and employment assistance, supports for living in the community, and assistive technology.
Demographics of Disability: Age, Gender, Race, Education, Income, and Geography
Disability is distributed differently in the population according to characteristics of age, gender, race, and ethnicity, and both region and size of locality in which a person resides. Educational level is inversely correlated with the prevalence of disability. Poverty is a key factor both as a contributing cause and a result of disability.
Posted June, 2000
Also see:
The 'new paradigm' of disability
Disability Statistics
Disability data from InfoUse
The following examples further illustrate the difficulty of defining disability without consideration of social factors:
It is likely that different people could have different responses to the question of whether any of the above-listed characteristics would result in "disability", and some might say , "It depends". This illustrates the differences in the terms "disability" and "handicap", as used by the United Nations.
DEFINITIONS OF DISABILITY
Handicap is therefore a function of the relationship between disabled persons and their environment. It occurs when they encounter cultural, physical or social barriers which prevent their access to the various systems of society that are available to other citizens. Thus, handicap is the loss or limitation of opportunities to take part in the life of the community on an equal level with others.
THE 'SOCIAL CONSTRUCT' OF DISABILITY
1. The individual may have an impairment which is not substantially limiting, but is treated by the employer as having such an impairment.
The definitions within a statute are related to the purpose of the statute. This is especially relevant in the field of disability policy, as one can find many different statutes, all with different definitions of this term. The purpose of the ADA is to prevent discrimination and to provide a remedy for people who have experienced it. This is consistent with the disability model of understanding disability, which places great importance on discrimination as a major cause of disadvantage. In order to provide an appropriate remedy to the full range of individuals who experience discrimination based on disability, it is necessary to explicitly recognize that there are people who would not consider themselves "disabled", nor would they be considered so by most others, but who receive the same disparate treatment as "the disabled".
For example: An employee has controlled high blood pressure which does not substantially limit his work activities. If an employer reassigns the individual to a less strenuous job because of unsubstantiated fear that the person would suffer a heart attack if he continues in the present job, the employer has "regarded" this person as disabled.
2. The individual has an impairment that is substantially limiting because of attitudes of others toward the condition.
For example: An experienced assistant manager of a convenience store who has a prominent facial scar was passed over for promotion to store manager. The owner believed that customers and vendors would not want to look at this person. The employer discriminated against her on the basis of disability, because he perceived and treated her as a person with a substantial limitation.
3. The individual may have no impairment at all, but is regarded by an employer as having a substantially limiting impairment.
For example: An employer discharged an employee based on a rumor that the individual had HIV disease. This person did not have any impairment, but was treated as though she had a substantially limiting impairment.
This part of the definition protects people who are "perceived" as having disabilities from employment decisions based on stereotypes, ears, or misconceptions about disability. It applies to decisions based on unsubstantiated concerns about productivity, safety, insurance, liability, attendance, costs of accommodation, accessibility, workers' compensation costs or acceptance by co-workers and customers.
Accordingly, if an employer makes an adverse employment decision based on unsubstantiated beliefs or fears that a person's perceived disability will cause problems in areas such as those listed above, and cannot show a legitimate, nondiscriminatory reason for the action, that action would be discriminatory under this part of the definition.
The courts have had a difficult time interpreting this complex definition.
Read more on the "social construct" of disability in Deborah Kaplan's article on definitions of disability
Disability and Census 2000
Expert Sources:
http://www.disabilitystatistics.org
Employment and Disability Institute
Industrial Labor Relations School
Cornell University
Andrew J. Houtenville, Ph.D.
Senior Research Associate
Telephone: (607) 255-5702
Fax: (607) 255-2763
TTY/TDD: (607) 255-2891
Contact: Lita Jans at ljans@infouse.com
OTHER ITEMS OF INTEREST:
The following sites contain information that may be of interest. Please bear in mind that the information at these sites is not controlled by the Center for An Accessible society. Links to these sites do not imply that the Center supports either the organizations or the views presented.
The National Rehabilitation Information Center
Chartbook on Women and Disability in the United States
The latest publication in the Chartbook series, "Chartbook on Women and Disability in the United States," is a reference on national statistical information on gender and disability. All the charts and text from this chartbook are available on-line, and you may also download the entire chartbook in PDF format for printing. Last updated: 07/21/99.
InfoUse has recently published the "Chartbook on Work and Disability in the United States," a reference on national statistical information on work disability. All the charts and text from this chartbook are available on-line, and you may also download the entire chartbook in PDF format for printing. Last updated: 03/19/99. Note: Some charts have been updated with 1998 CPS data. Chartbook on Disability in the United States
InfoUse has published a revision of its "Chartbook on Disability in the United States," a reference on national statistical information on disability. This section of our Web site includes Chartbook excerpts, with an electronic version of the entire chartbook available for downloading in PDF format. Last updated: 11/12/98.
Overview
The 'new paradigm' of disability
One in 5 working-age people reports a disability
Read Deborah Kaplan on the definitions of disability
Research on disability definitions from NIDRR