The 1980s: A Growing Emphasis on Capacity. Understanding the Impact of the Environment.
In the 1980s, there were four critical developments in the definitions of developmental disabilities:
- The full legitimization of the view that the social and physical environment (what we do to people) disables them.
- The crumbling of limited understandings of what people with severe disabilities can do.
- The needs of people with developmental disabilities require individually planned and coordinated supports and services.
- The developmental period is extended back to conception and forward to age 22.
In 1980, the World Health Organization (WHO) underscored the role and impact of access to opportunities and support. The WHO acknowledged that people with disabilities experience disadvantage when they encounter barriers and lack of opportunities to take part in the life of the community on an equal level with others. The WHO emphasized the importance of shortcomings in the environment and in many organized activities in society which prevent persons with disabilities from participating on equal terms.
World Health Organization
The Power of the Environment
By providing opportunities and supports, and by removing barriers, people become less disadvantaged and more able to participate. Social supports and technological assistance can support an individual to overcome a disability, perform activities, and fulfill valued social roles.
This perspective became more widely understood during the 1980s as the impact of physical, social, and attitudinal barriers gained greater recognition. Increasingly, the absence of accommodating facilities, existence of segregated programs, and lowered expectations were seen as limiting people from living full and meaningful lives.
The Presidentially-appointed National Council on the Handicapped, in 1986 said, "man-made obstacles" result in limits greater than those caused "by any specific physical or mental disability."
Last year [1987], Mr. Justice William Brennan, speaking for the U.S. Supreme Court, in School Board of Nassau County v Arline wrote, "Congress acknowledged that society's accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment." (Gartner and Lipsky, 1988)
Justice Brennan
John McKnight has been very instrumental in helping us understand the power of the environment. In the 1980s, McKnight often reported on the research of Nora Groce and deafness in West Tisbury on Martha's Vineyard. Because of a high level of hereditary deafness in Martha's Vineyard from the 17th through the early 20th century, the community adapted to deafness. Hearing people and deaf people alike spoke sign language. If there is no community barrier to communication, then where is the disability?
In 1989 McKnight wrote a story called, "Why Servanthood is Bad" and it opens with Nora Groce's study of this population.
John McKnight
In 1990, Martha Minow offered an example of how "inclusive education" could really work, if we only took the Martha's Vineyard example to heart. Minow described the case of Amy Rowley and her parents' fight to get the school board to provide her with a qualified sign-language interpreter in all her classes.
In the course of the litigation, a number of alternative ways to ensure Amy's right to a free, appropriate education could be respected. The school argued that Amy should receive instruction from a tutor and the services of a speech therapist. Amy's parents argued that Amy should be provided with a qualified sign-language interpreter in all her classes.
The school countered that Amy only needed supplementary instruction from a tutor and the services of a speech therapist. With that level of support, she was succeeding academically and socially. In the end, the court supported the school.
In many ways, the two sides of the argument agreed more than they differed. Both sides assumed that the problem was Amy's: because she was different from other students, the solution must focus on her. Both sides deployed from the unstated norm of the hearing student who receives educational input from a teacher, rather than imagining a different norm around which the entire classroom might be constructed… Both conceive of equal treatment as treating this child the same as other children, while making unimpaired students – and the classroom designed for them – the norm used in this comparison.
Martha Minow
Minow suggests another alternative that was based on different norms:
A different stance would treat the problem of difference as embedded in the relationships among all the students, making all of them part of the problem. The individual teacher would need to use an approach that would work to the educational benefit of every student in the classroom, resisting the temptation to treat the problem as belonging to the "different" child….In this light, what if the teacher instructed all the students in sign language and ran the class in both spoken and sign language simultaneously? This approach conceives of the problem as a problem for all the students. After all, if Amy cannot communicate with her classmates, they cannot communicate with her, and all lose the benefit of exchange.
Emerging Understandings of Capacity
As it became clear that the environment can limit people, it also became clearer that people with severe disabilities had far more potential and capabilities than many imagined. In the 1970s and into the early 1980s people like Marc Gold clearly demonstrated that people with severe mental retardation could, indeed, learn to do complex tasks.
In that context, Gold defined mental retardation as "the level of power needed in the training process required for [the individual] to learn, and not by limitations in what he or she can learn". Gold further stated: "The height of a retarded person's level of functioning is determined by the availability of training technology and the amount of resources society is willing to allocate and not by significant limitations in biological potential."
The Gold definition placed the onus of responsibility on society to advocate for individuals with severe mental retardation and to ensure their quality of life, rather than on the individual. The commitment of resources and the interventions that society can and must provide empower people.
In other words, teaching strategies, adaptive technology, and the commitment or resources can remove the disadvantages in the environment.
The competency/deviancy hypothesis states that "the more competence an individual has, the more deviance will be tolerated in that person by others". The implication of the hypothesis is that even when sophisticated technology is not available or has not been developed to increase or change a person's behavior, the focus of that person's intervention should be on teaching him or her competencies.
Marc Gold's work on training in the 1970s helped develop the technology to empower people. It laid the groundwork for an ever increasing emphasis on competency and capacity from the 1980s on.
Marc Gold
Labels as Self Fulfilling Prophecies
All of these trends did not mean that there was not still a very heavy emphasis on labeling and limiting people. Limited and limiting expectations remained inherent in the definition of disability for many.
For instance, in the May 1982 issue of Pediatric Annals there appeared a table: Prognosis and Expected Functional Level based on degree of retardation. For each "level of mental retardation" expected outcomes were described in terms of academic potential, activities of daily living, travel capability, and vocational ability.
For instance, under "vocational ability" it was said that for those who are "severe" the prognosis is "sheltered employment only, special training required". On the one hand, we were beginning to learn how to support people labeled "severely, profoundly and multiply disabled" to engage in supported employment.
On the other hand, pediatricians were being given information that would lead parents not to expect that kind of outcome for their children, and then quite possibly not to seek it out. [Pediatric Annals 11:5/May 1982 page 425]
Sheltered Employment
The 1971 Report of the President's Committee
This was a slight improvement over the prognosis outlined in a 1971 report of the President's Committee on Mental Retardation. In 1971, the belief was that the individual "may contribute partially to self-maintenance under complete supervision; can develop self-protection skills to a minimal useful level in controlled environment". There was no mention of vocational, let alone employment, potential.
People with disabilities continued to be defined by the lack of capability and the "expected outcome" and therefore denied opportunities to move beyond conservative expectations. People defined as incapable of working in the real world are not likely to be offered opportunities to work in the real world.
In this way, these charts describing the developmental characteristics or functioning levels of individuals became self fulfilling prophecies. Similarly, the belief was that if we could develop better tests to better predict functioning level, then we could do a better job in planning for the future.
If we could only document "need" in these ways, then we could estimate in advance how many beds were needed, how many sheltered workshop slots were needed, how many behavior beds, how many respite beds, and so on. We could forecast service levels, building programs and budgets.
President's Committee on
Mental Retardation
Individual Planning Becomes an Inherent Part of the Definition of "Developmental Disability"
The Developmental Disabilities Act of 1984 recognized the importance of linking service delivery to individual planning and coordination. P.L. 98-527 stated that "a developmental disability is a severe, chronic disability which… reflects the person's need for a combination and sequence of special interdisciplinary or generic care, treatment or other services which are of lifelong or extended duration and are individually planned and coordinated."
This definition was linked to the requirement that each person receiving services under the Act must have an individual habilitation plan.
Developmental Disabilities Office
Broadening of the "Developmental Period"
In 1983 the AAMR expanded the definition of the developmental period from conception to age 18 (Grossman 1983 cited by Smith 382). This meant that persons with mental retardation resulting from prenatal factors were made eligible for services.
In the 1984 amendments to the Developmental Disabilities Act extended the upper age of onset to 22 years.
Looking Ahead Booklet