Join Date: Jul 2001
The Definition of Disability
The Definition of Disability
BY DEBORAH KAPLAN
Deborah Kaplan is Director of the World Institute on Disability.
The questions of the definition of "person with a disability" and how persons with disabilities perceive themselves are knotty and complex. It is no accident that these questions are emerging at the same time that the status of persons with disabilities in society is changing dramatically.
The Americans with Disabilities Act (ADA) is the cause of some of these changes, as well as the result of the corresponding shift in public policy. Questions of status and identity are at the heart of disability policy. One of the central goals of the disability rights movement, which can claim primary political responsibility for the ADA, is to move American society to a new and more positive understanding of what it means to have a disability
DISABILITY POLICY SCHOLARS DESCRIBE four different historical and social models of disability: A moral model of disability which regards disability as the result of sin;
A medical model of disability which regards disability as a defect or sickness which must be cured through medical intervention;
A rehabilitation model, an offshoot of the medical model, which regards the disability as a deficiency that must be fixed by a rehabilitation professional or other helping professional; and
The disability model, under which "the problem is defined as a dominating attitude by professionals and others, inadequate support services when compared with society generally, as well as attitudinal, architectural, sensory, cognitive, and economic barriers, and the strong tendency for people to generalize about all persons with disabilities overlooking the large variations within the disability community." Reference 1.
THE MORAL MODEL is historically the oldest and is less prevalent today. However, there are many cultures that associate disability with sin and shame, and disability is often associated with feelings of guilt, even if such feelings are not overtly based in religious doctrine. For the individual with a disability, this model is particularly burdensome. This model has been associated with shame on the entire family with a member with a disability. Families have hidden away the disabled family member, keeping them out of school and excluded from any chance at having a meaningful role in society. Even in less extreme circumstances, this model has resulted in general social ostracism and self-hatred.
THE MEDICAL MODEL came about as "modern" medicine began to develop in the 19th Century, along with the enhanced role of the physician in society. Since many disabilities have medical origins, people with disabilities were expected to benefit from coming under the direction of the medical profession. Under this model, the problems that are associated with disability are deemed to reside within the individual. In other words, if the individual is "cured" then these problems will not exist. Society has no underlying responsibility to make a "place" for persons with disabilities, since they live in an outsider role waiting to be cured.
The individual with a disability is in the sick role under the medical model. When people are sick, they are excused from the normal obligations of society: going to school, getting a job, taking on family responsibilities, etc. They are also expected to come under the authority of the medical profession in order to get better. Thus, until recently, most disability policy issues have been regarded as health issues, and physicians have been regarded as the primary authorities in this policy area.
One can see the influence of the medical model in disability public policy today, most notably in the Social Security system, in which disability is defined as the inability to work. This is consistent with the role of the person with a disability as sick. It is also the source of enormous problems for persons with disabilities who want to work but who would risk losing all related public benefits, such as health care coverage or access to Personal Assistance Services (for in-home chores and personal functioning), since a person loses one's disability status by going to work.Reference 2.
THE REHABILITATION MODEL is similar to the medical model; it regards the person with a disability as in need of services from a rehabilitation professional who can provide training, therapy, counseling or other services to make up for the deficiency caused by the disability. Historically, it gained acceptance after World War II when many disabled veterans needed to be re-introduced into society. The current Vocational Rehabilitation system is designed according to this model.
Persons with disabilities have been very critical of both the medical model and the rehabilitation model. While medical intervention can be required by the individual at times, it is naive and simplistic to regard the medical system as the appropriate locus for disability related policy matters. Many disabilities and chronic medical conditions will never be cured. Persons with disabilities are quite capable of participating in society, and the practices of confinement and institutionalization that accompany the sick role are simply not acceptable.
THE DISABILITY MODEL has taken hold as the disability rights and independent living movements have gained strength. This model regards disability as a normal aspect of life, not as a deviance and rejects the notion that persons with disabilities are in some inherent way "defective". As Professor David Pfeiffer has put it, "...paralyzed limbs may not particularly limit a person's mobility as much as attitudinal and physical barriers. The question centers on 'normality'. What, it is asked, is the normal way to be mobile over a distance of a mile? Is it to walk, drive one's own car, take a taxicab, ride a bicycle, use a wheelchair, roller skate, or use a skate board, or some other means? What is the normal way to earn a living?"Reference 3.. Most people will experience some form of disability, either permanent or temporary, over the course of their lives. Given this reality, if disability were more commonly recognized and expected in the way that we design our environments or our systems, it would not seem so abnormal.
The disability model recognizes social discrimination as the most significant problem experienced by persons with disabilities and as the cause of many of the problems that are regarded as intrinsic to the disability under the other models.
The cultural habit of regarding the condition of the person, not the built environment or the social organization of activities, as the source of the problem, runs deep. For example, it took me several years of struggling with the heavy door to my building, sometimes having to wait until a person stronger came along, to realize that the door was an accessibility problem, not only for me, but for others as well. And I did not notice, until one of my students pointed it out, that the lack of signs that could be read from a distance at my university forced people with mobility impairments to expend a lot of energy unnecessarily, searching for rooms and offices. Although I have encountered this difficulty myself on days when walking was exhausting to me, I interpreted it, automatically, as a problem arising from my illness (as I did with the door), rather than as a problem arising from the built environment having been created for too narrow a range of people and situations.Reference 4.
The United Nations uses a definition of disability that is different from the ADA:
Impairment: Any loss of abnormality of psychological, 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.
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.Reference 5.
This definition reflects the idea that to a large extent, disability is a social construct. Most people believe they know what is and is not a 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. 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 following examples further illustrate the difficulty of defining disability without consideration of social factors:
* A person who has a cochlear implant ;
* A person who has a digestive disorder that requires following a very restrictive diet and following a strict regime of taking medications, and could result in serious illness if such regime is not adhered to;
* A person with serious carpal tunnel syndrome;
* A person who is very short.
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 U.N. Any of the above traits could become a "handicap" if the individual were considered disabled and also received disparate treatment as a result.
Another example of the social construction of disability is when society discriminates against an individual who may have an "impairment" (in the sense of the U.N. definition) without a corresponding functional limitation. "The power of culture alone to construct a disability is revealed when we consider bodily differences - deviations from a society's conception of a "normal" or acceptable body - that, although they cause little or no functional or physical difficulty for the person who has them, constitute major social disabilities. An important example is facial scarring, which is a disability of appearance only, a disability constructed totally by stigma and cultural meanings. Stigma, stereotypes, and cultural meanings are also the primary components of other disabilities, such as mild epilepsy and not having a 'normal' or acceptable body size."Reference 6.
The definition of disability in the ADA reflects a recognition of the social construction of disability, especially 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:
1. The individual may have an impairment which is not substantially limiting, but is treated by the employer as having such an impairment.
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 am 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...
Last edited by antiquity; 04-11-2009 at 01:20 PM.