THE MEANING OF DISABILITY: EVOLVING CONCEPTS

By Susan M. Daniels, Ph.D.

This article is reprinted from the A.T. Quarterly, Volume 1, Number 3 (1990)

It is the rare disability professional who today does not recognize the acronym "Tech Act" as standing for the Technology-Related Assistance for Individuals with Disabilities Act of 1988, P.L. 100-407, signed by the President in August 1988. Introduced in Congress in late June of 1988, this bill became law in the unheard of speed of three months. As the Tech Act moves toward the implementation of its various programs, its less obvious meaning should not allude the policy and research communities. The Tech Act stands as nothing less than a harbinger of a paradigm shift. Paradigm "shifts" are revolutionary by their nature. This particular one is fueling an evolution of disability concepts in America and redefining the meaning of disability in the social/cultural context of the 1990s. This is a context where technology is transforming our notions of humanity, environment and action into synergistic system of mutually influencing factors. How we think about "disability "is being affected.

Disability Paradigms

In its most basic form, a paradigm is simply a mind-set, a cognitive map, a set of perceptions that structure individual observations so that theories can be developed and cause and effect can be determined. It is simply a way of organizing information so that one bit of it relates to another bit. Often, a paradigm is unconscious or is so taken for granted that its very existence is unquestioned. For example, in one paradigm (in this article called the "Individual Defect Paradigm") disability refers to the fact that some people are different from others in ways that are not desirable. Some people cannot walk, others cannot hear, some cannot see, while others see and hear what others do not. These people are seen as handicapped and thus in need of medical care, special education, vocational rehabilitation and a host of services to cure them, if possible, or to help them "adjust" to their afflictions, if recovery is not possible. Their impairments are diagnosed and evaluated, plans (for treatment, education or rehabilitation) are prescribed, and professionally directed courses of action are followed to assist these individuals in reaching some predetermined goals.

Disability, in this dominant paradigm, is a characteristic of individual people. These characteristics are negative, they are relatively easy to measure, somewhat harder to fix and are generally incurable. With very rare exceptions, publicly and privately supported programs for handicapped people (P.L. 94-142 (the Rehabilitation Act), SSDI, etc.) are logical remedies in this paradigm.

While this common sense notion of disability still pervades most of America and its social policy, the Tech Act both reflects and portends of changes in how "handicaps" are defined and viewed.

The first change is a semantic one: the term "handicapped" is dropped and the term "disability" emerges. This change is much more than cosmetic, however. The Tech Act presents a view of disability that is substantially different from previous legislation. It directs our attention to:

The Tech Act embraces an entirely new paradigm. In this paradigm disability is construed as "a lack of fit between a person's goals, his or her capacities and environmental resources" (Brita Meng, With a Little Help From My Mac, MacWorld, September 1990, pg. 181) and the way to promote productivity and independence of people with disabilities is seen as making available the technology resources and knowledge necessary to perform activities of ones choosing.

Paradigms Compared

The meaning of the this paradigm (for our discussion, we will call it Technology/Ecology paradigm) can be best illustrated when it is compared to the common sense "individual defect" paradigm (See chart at the end of this document).

Are The Paradigms Compatible?

Some regard these two paradigms as mutually compatible. From this perspective, one recognizes that disability may be a highly personal experience and that individual functional improvements are possible and even advantageous to the person involved. Efforts are directed at "overcoming" unfortunate odds through rehabilitation, education and technology. Recognition is given to the systemic and ecological barriers that must be faced and some approaches to lessening these include special transportation, assistive technology development (improving wheelchairs, designing devices), public relations campaigns ("hire the handicapped week"), to name a few.

Others view these two paradigms as fundamentally antagonistic. They assert that people with disabilities do not need to "get better" any more than the average citizen needs to improve his/her fire making skills. The priority here is to recognize technology defines, in large part, what and how people do things and that variation in individual capacities is a characteristic of all human beings. In the Technology/Ecology paradigm a broken wheel has the same impact on a person regardless of their particular physiology. A nondisabled truck driver, bus passenger who is blind and wheelchair using athlete are all similarly halted when their rolling stock technology fails. Attention diverted from the true issue (aligning goals, capacities and resources) is, more or less, a smoke screen designed to perpetuate the existing systems, professions and economic arrangements. From this perspective, the lack of substantial improvement and, in fact, the worsening economic and social status of people with disabilities in this country, is evidence that the "individual defect" model is flawed. Technological, ecological and environmental reform are necessary to attack the real problems.

Evolutions and Revolutions

For all of us connected to the disability community, a formidable challenge awaits. As paradigms change, they call for new insights, deeper courage and honest appraisal of our actions. Intellectual understanding comes easy; internalized value changes and new patterns of behavior are more difficult. Those of us who are experiencing the dramatic impact of our technological revolution are questioning what we do, how we do it and why do we do it.

Reconsideration of our long held beliefs must follow. Backlash is to be expected and, perhaps, is inevitable.

The Tech Act was a first excursion into redefining disability. Now this year the Americans with Disabilities Act (P.L. 101-336) takes us even farther. The ADA paints a picture of disability that is radically different from previous legislation. ADA depicts the problem of disability as a problem of flagrant, systemic, pernicious discrimination by the majority against a minority. The ADA reflects the current disability paradigm among disability advocates. The ADA articulates a new message: the way to promote productivity and independence of people with disabilities is to remove the barriers that our society has created and restore the rights of citizens with disabilities to partake of the opportunities available to Americans.

"Disability" in America is an evolving concept. We will have to think hard and change fast to keep up. Rollerblades, anyone?


                                  Disability Paradigms Compared
Issues                Individual Defect Paradigm            Technology/Ecology Paradigm
Focus of              The patient, the client, the          The systems of resources for 
the Paradigm          student, the individual with a        assistive technology; information,
                      disability                            financing, availability and
                                                            development of assistive technology
Nature of the         Failure of individuals to perform     Lack of access to appropriate 
Problem               major life activities such as         resources: tools, information and
                      walking, seeing, working, learning,   training
                      self-care
Source of the         A physical, mental or emotional       Lack of fit between a person's goals,
Problem               malfunction of an individual          capabilities and environmental
                                                            resources, the "medicalization" of
                                                            resource problems
Evidence That a       The indisputable observation of       Consistent, wide spread reports of
Problem Exists        impairments in individuals and the    failure to acquire appropriate
                      confirmation by medical diagnosis;    assistive technology from people
                      dependency on welfare, medical        with disabilities; extensive levels
                      assistance, support or other          of poverty, unemployment and
                      services                              segregation among people with
                                                            disabilities; meager gains in 
                                                            ameliorating the problem even after
                                                            enormous expenditures of resources
Consequences of       Internalization of a deviance role    Internalization of "consumer/customer"
the Problem for       and acceptance of a lesser status     role status and externalization of 
the Individual                                              action to acquire resources   
Solutions Sought      Restoration of function, if           Access to assistive technology that
                      possible or adaptation to defects,    supports achievement of economic,
                      e.g. using crutches or an             social, educational and community
                      artificial limb                       goals
Strategies Employed   Medical evaluation and treatment      Development of technology and
                      rehabilitation, special education,    integrated delivery systems that are
                      rehabilitation technology; services   responsive to consumer expectations
                      designed for and used exclusively     and need; a market driven system
                      by people with disabilities
Consequences of the   Individual gains in functional        The removal od systemic and
Strategies            abilities (e.g., ability to walk,     structural barriers, regarding oneself
                      acquired trade skill), acceptance of  and being regarded as an equally 
                      and reliance on service systems,      capable person, greater reliance on
                      internalizations of the role          the economic, environmental, legal,
                      behaviors associated with being a     and social tools used and valued
                      "patient" or "client"                 by mainstream America
Desired Outcomes      Improved functional capacity,         Equal opportunity, freedom of choice,
                      return to work, improved personal     achievement of personal goals
                      adjustment, less use of support
                      services
(Thank you, Gerben Dejong for this fine chart concept.)  

The A.T. Quarterly was a newsletter developed by the RESNA TA Project under a contract with the National Institute on Disability and Rehabilitation Research (NIDRR), U.S. Department of Education (ED). The content, however, does not necessarily reflect the position or policy of NIDRR/ED and no official endorsement of the material should be inferred.


RESNA TA Project
1700 North Moore Street, Suite 1540
Arlington, VA 22209-1903
Phone: 703-524-6686 | Fax: 703-524-6630 | TTY: 703-524-6639