Sunday, February 1, 2009

Social integration - A Differerent View by Rick Eastin

Social Integration – A Different View
By Rick Eastin

Here we will examine the topic of social integration of persons who are developmentally disabled/mentally retarded into mainstream American society. I will first look at the concept of integration and segregation of people in general in our society. The second area I will examine is the definition of mental retardation, and the treatment and care of persons with developmental disabilities in America from 1950 to 1970. The third area I will consider is the current social integration movement. I will conclude with a look at the ethics of the current movement as it relates to values of self determination and informed consent that are fundamental to social work practice.

Segregation is the result of prejudice. As a society, America has a history of the practice of prejudice based on sex, race, age and disability. “Prejudice is a negative attitude of prejudgment tinged with unreasonable suspicion, fear, or hatred.” (Coon, 1984, p. 579) This type of behavior occurs because people believe that certain groups of individuals, who share a similar, trait are somehow inferior. When people are viewed as inferior, they are devalued or even dehumanized by the surrounding culture. The reason this perception occurs is because deviancy is “a) being different from others, b) one or more dimensions of identity, which c) are viewed as significant by others, and d) these differences must be negatively valued.” (Wolfensberger, 1980, p. 8)

As a nation we have used our U.S. constitution and our court system to help correct the injustices of prejudice. Our constitution states very clearly that all persons are created equal; therefore, prejudice and its outcome, segregation, are unlawful.

Now let's look at the definition of mental retardation along with the care and treatment of persons who are mentally retarded from 1950 to 1970:
“Mental retardation refers to significantly sub-average general intellectual functioning existing concurrently with deficits in adaptive behavior and manifested during the developmental period.” (Grossman, 1983, p. 1) Adaptive Behavior: “the effectiveness or degree with which individuals meet the standards of personal independence and social responsibility expected of their age and cultural group. The aspects of this behavior are maturation, learning, and/or social adjustment.” (Grossman, 1983, p. 157)

The 1950’s were a very important time in our country for the care and treatment of persons who are mentally retarded. However, in order to understand what was happening during this period we have to look further back into the past. Looking now at the beginning of the establishment of institutions in America and their intended function, the original purpose of institutions was to educate mentally retarded individuals so they could be returned back to the community. “…on October 1, 1848, the first institution for the mentally retarded was opened with ten children.” (Kirk and Gallagher, 1979, p. 137)

However, according to Elmer Towns and Roberta Groff, at the end of the nineteenth century a wave of pessimism swept the country. No longer were residential schools viewed as training institutions for the habilitation of the mentally retarded. Instead, they were viewed as custodial facilities for children and adults who were hopelessly dependent. (Towns and Groff, 1971, p. 120)

Then in the 1950’s there was a resurgence of interest in the care and treatment of mentally retarded persons. The primary reason for the resurgence of interest was the formation of the National Association of Retarded Children, according to the Executive Director of the Fresno Association of Retarded Citizens, Gloria McQustion. “In 1952 we were a group of concerned parents who wanted an alternative to an institutional life for our children.” Parents also sought to get their children into the public schools.

According to Kirk and Gallagher, “organized parent groups also placed great pressure on local school boards and state legislatures to provide help for their children. They succeeded in most instances, in getting their trainable children included under the special education provisions of the state laws”. (Kirk and Gallagher, 1979, p. 140)

During the 1960’s there was a movement to depopulate institutions. This trend came to be known as deinstitionalization.
…the movement was given great impetus by the many horror stories and exposures regarding institutions conditions. Public outrage at the dehumanizing nature of such facilities lead to immediate calls for reform including such drastic action as closing all such institutional ‘warehouses’. (Maloney and Ward, 1979, p.295)

As a result of the deinstitionalization movement two types of community programs were developed for the care and treatment of retarded persons.
Group homes:
One alternative to the institution was provided by group homes. In some communities, small units have been established that operate as much on the family concept as possible. The purpose of the group home is to create an environment for the mentally retarded adult that is more home-like than that of a large institution, and a setting in which a variety of skills necessary for effective living can be mastered. (Kirk and Gallagher, 1979, p. 165)

The second type of community program to be developed for mentally retarded individuals was the sheltered workshop. A sheltered workshop is “a facility which provides occupational training and/or protective employment for mentally retarded persons and or persons with other handicapping conditions.” (Kirk and Gallagher, 1979, P 166) These were the major developments of the 1950’s and 1960’s concerning the care and treatment of mentally retarded individuals.

I now want to turn your attention to the current social integration movement. A major philosophical shift started to occur in the early 1970’s from simply providing services in the community for persons who are mentally retarded to the social integration of them into mainstream society. In 1972 Wolf Wolfensberger wrote a book entitled The Principle of Normalization in Human Services. This book represents the ideology of the current social integration movement. In this now classic text, Wolfensberger formulates and articulates a case for improving the lives of persons with developmental disabilities. He states A) since persons with development disabilities have characteristics that the dominant culture does not always applaud, it is our task to help eliminate these characteristics so that these people will be seen as socially valued members of society. B) So this means, that we should do away with all principles of helping the developmentally disabled, when the means of helping these people are not highly esteemed by the mainstream culture. This implies doing away with special schools, sheltered workshops, group homes, and Special Olympics. (Brown et al, 1984, Brown 1991, Wolfensberger, 1980) The principle of normalization is rooted in the sociological understanding of deviancy. (Flynn and Nitsch, 1980) Marc Gold, another supporter of the current social integration movement said, “The more competence an individual has, the more deviance will be tolerated in that person by others. (Gold, 1975)

From a normal human developmental perspective persons who are mentally retarded are placed into four categories/levels. These are: profound, severe, moderate and mild. Comparing the level of intellectual functioning reached by persons who are mentally retarded as adults, based on the Piaget’s theory of cognitive development, the break down is as follows: persons who are profoundly retarded reach a mental age of up to 2 years of age, persons who are severely retarded have a mental age between 3-5 years of age, persons who are moderately retarded have a mental age of between 5.5 to just under 8 years of age, persons who are mildly retarded have a mental age between 8-12 years of age. (Grossman, 1983)
There are two different types of mental retardation. One is cultural familial retardation. Persons with this type of retardation have no physical stigma and no central nervous pathology. These persons tend to come from a lower social economic background. Persons in the second group are organically damaged in that they do have central nervous pathology, physical stigma, and come from all economic backgrounds. Generally persons in the first group are mildly retarded and able to live on their own as adults and also tend to be able to develop a normal adult self concept. (Zigler et al, 1984) However, those in the second group generally are moderately to profoundly retarded and are not likely to be able to develop an adult self concept. These individuals tend to be childlike in their overall understanding as adults. (Heal, 1988) These persons in the second group are not likely to be able to live on their own as adults. (Ziegler et al, 1984) There is some overlapping between the groups in that there are those at or below the moderate level with no pathology. In most cases, pathology is the determining factor as to whether a person is able to develop a normal adult self concept and be able to live independently as adults. (Ziegler et al, 1984) My focus is on those persons with pathology.

The promoters of the current social integration movement are advocating for the abandonment of the normal human developmental model of learning.
In sum, all children, including those with severe intellectual disabilities, should get opportunities to progress through normal human development stages and phases. They should also be given opportunities to function as independently and as productively as possible in an array of habilitative integrated environments and activities at age 21. Sometimes, these opportunities are incompatible. That is, if they are required to progress through the same stages and phases through which non-disabled students presumably progress, probabilities are great that students with disabilities, at the age of 21, will not be as independent or as productive as they could have been if alternative routes to adulthood had been taken. Thus, Normal Development Curricular Strategies must be respected, but carefully scrutinized, modified, or abandoned whenever appropriate, and replaced with instructional strategies designed to minimize rather than maximize differences in adults in this condition. (Brown et al, 1988, p. 70)

They want to replace the normal development model with a top down skills model of learning which is based on behavior modification/applied behavior analysis. (Hanley-Maxwell, 1986, Matson and Rush, 1986)
According to advocates of this model, all persons who are mentally retarded/developmentally disabled should be placed in regular schools, jobs in the real world, and be part of non-disabled groups in regards to every aspect of their lives. (Brown 1991) The advocates of this movement understand that these people will need ongoing support to participate in integrated settings. (Myer, Peck, and Brown 1991) They also strongly reject the concept of mental ages as I have outlined. They stress that all persons regardless of the severity of intellectual impairment should be viewed and treated as adults. (Gardner and O’Brien, 1990, Brown et al, 1980) This movement is also based on the principle of equalitarianism, which says that all persons should be treated as equal. (Heal, 1988, Peck 1991)

Now I want to consider the current social integration in the context of the values of self-determination and informed consent. As professional social workers uphold the right of their clients to be self determining and this right is supported on the basis of the client’s ability to understand what they are doing – informed consent. However, the social integration movement does not teach these persons according to their understanding, but rather it conditions them to respond to stimuli. There is a difference between learning based on conditioning and learning that is based on understanding. (Beehick 1982, Coon 1984)

This approach often created problems for persons who are mentally retarded/developmentally disabled. Consider the topic of employment according to the supporters of social integration, “our uncompromising position is that sheltered work environments are indefensible on a number of dimensions”. (McLoughlin, 1987 p.17) However, research done with persons who are mentally retarded in the form of interviews, shows that many of these individuals prefer sheltered workshops over employment in mainstream society. (Turner 1983, Turner 1984)

…in the growing enthusiasm for programs for supported work, many clients have been more or less forced to leave sheltered workshops to accept work placements in the competitive economy. Because many of these people left all of their friends at their workplaces, it is common place for them to express great unhappiness about their new and improved lives. Some clients who resist their counselor’s pressure to enter supported work are openly threatened all in the service of improving the quality of their lives, but not it seems, their sense of well-being. (Edgerton, 1990 p.152)

Often times the advocates of this movement ignore the desires of the person with a disability in regards to the recreation and leisure activities these individuals find enjoyable. (Riddle and Riddle, 1982)

This material shows that the reason integration has not successfully taken place, is that the demands that are being placed on these individuals are beyond their understanding. Whenever people in general are placed in conditions they do not understand this creates stress in their lives and this often creates problems in their social adjustment to their environment. (Carson, Butcher, and Coleman, 1988)

As we saw, this movement is based on two different ideologies: social deviancy and equalitarianism. However, these ideologies are incompatible with each other; for with the first, one must change to be acceptable, whereas the second one says that all people are to be accepted as equal. The goals of the social integration movement are noble in that these people want the lives of individuals with mental retardation/developmental disabilities to be improved. They want them to be able to live lives of dignity and respect; however, they do not respect the felt needs, desires, and perceptions of the people they aim to serve. (Rowtiz and Stoneman, 1990)
If the human service community is to maintain its commitment to the values of self-determination and informed consent, we must acknowledge the felt needs, desires, and comprehendability of those who are mentally retarded/developmentally disabled. When their needs and desires are not what we consider to be in accord with the current social integration ideology, we need to be advocates for this group in that we uphold and respect their choices. We also need to realize that although the normal development model has been rejected by advocates of the social integration model, this does not change the fact that people with this condition understand the world according to their mental ability. There is a need to help the general public understand these individuals in the context of their mental abilities. When they do, I believe this helps eliminate what I view as an injustice. Rather than seeing these persons as deviants they will see them in a different light. If the human service community does not respect the needs and desires of this group, we are not treating them with dignity, thus we are not treating them in an ethical manner.

References:
Perspective and Issues, Washington DC: American Association on Mental Retardation, pp. 149-160.

Flynn, R.J., and Nitsch, K.E., (1980) Normalization Accomplishments to Date and Future Priorities. In R.J. Flynn and K.E. Nitsch, (Eds.) Normalization Social Integration and Community Services. Austin: Pro-ed, pp. 363-393.

Gardner, J.F., & O’Brien, Jr., (1990) The Principle of Normalization. In J.F. Gardner & M.S. Chapman, (Eds.), Program Issues in Development Disabilities. Second Edition, Baltimore, MD: Paul H. Brooks Company, pp. 39-57.

Gold, M. (1975) Vocational Training. In J. Wortis (Ed.), Mental Retardation and Developmental Disabilities: An annual review (Vol. 7) New York: Brunner/Mazel

Grossman, Herbert J., (1983) Classification in Mental Retardation. Washington DC: American Association on Mental Deficiency.

Heal, W.L. (1988) The Ideological Responses of Society to its Handicapped Members. In W.L Heal, J.L. Haney & A.R. Novack Amado, (Eds.) Integration of Developmentally Disabled Individuals Into the Community. Second Edition, Baltimore: Paul H. Books Company pp. 59-67.

Hanley-Maxwell, C., (1986) Curriculum Development. In F. R. Rusch (Ed.), Competitive Employment Issues and Strategies. Baltimore: Paul H. Brooks Publishing Company, pp. 187-189.

Krik, S.A., and Gallagher, J.J., (1979). Educating Exceptional Children, Third Edition, Boston: Houghton Mifflin.

Maloney, M.P. & Ward, M.P., (1979). Mental Retardation and Modern Society, New York: Oxford University Press.

Matson, J.L. and Rusch, F.R., (1986) Quality of Life: Does Competitive Employment Make a Difference? In F.R. Rusch (Ed.), Competitive Employment Issues and Strategies. Baltimore: Paul H. Brooks Company.

McLoughlin, C.S. Garner, J.R. Callahan, M., (1987). Getting Employed, Staying Employed. Baltimore: Paul H. Brooks Publishing Company.

McQustion, Gloria, Literature from the Fresno Association for Retarded Citizens.

Meyer, L.H., Peck, C.A., & Brown, L., (1991). Definition of the People TASH Serves (originally adopted December 1985: revised November 1986). In L.A. Meyer, C.A. Peck, & L. Brown, (Eds.), Critical Issues in the Lives of People with Severe Disabilities. Baltimore: Paul H. Brooks Company, p. 19.

Peck, C.A., (1991) Linking Values and Science in Social Policy Decisions Affecting Citizens with Severe Disabilities. In L.A. Meyer, C.A. Peck, & Lou Brown, (Eds.) Critical Issues in the Lives of Persons with Severe Disabilities. Baltimore: Paul H. Brooks Company, pp. 1-15.

Riddle, J.I., & Riddle, H.C., (1982) The “Joy Quotient”: Observations on our need to prioritize pleasure in the lives of the severely handicapped. An occasional paper of the National Association of Public Institutions for the Mentally Retarded, #20, January, 1983.

Rowitz, L. & Stoneman, Z., (1990) Community First. Mental Retardation, 28, iii-iv.

Towns, E.L., & Grott, R.L., (1972) Successful Ministry to the Retarded. Chicago, Moody Press.

Turner, J.L. (1983) Workshop Society: Ethnographic observations in a work setting for retarded adults. In K.T. Kerman, M.J. Begab, & R.B. Edgerton (Eds.), Environments and Behavior: The Adaptation of Mentally Retarded Persons. Baltimore: University Park Press pp.147-171.

Turner, J.L., Kerman, K.T., & Gelphman, S., (1984) Speech etiquette in a sheltered workshop. In R.B. Edgerton (Ed.), Lives in Process: Mentally Retarded Adults in a Large City. Washington, DC: American Association on Mental Deficiency pp. 43-71.

Wolfensberger, W. (1980) A Brief Overview of the Principle of Normalization. In R.J. Flynn and K.E. Nitsch (Eds.), Normalization Social Integration and Community Services. Austin: Pro-ed, pp. 7-31.

Ziegler, E., Balla, D., & Hodapp, R. (1984) On the definition and classification of mental retardation. American Journal of Mental Deficiency, pp. 89, 215-230.

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