Empowerment and Protection
By Rick Eastin
Here we will look at some of the trends in the care and treatment of persons with developmental disabilities. Further, we will look at the current empowerment paradigm in light of the Biblical mandate to care for “the weak.”
According to public law (101-406) the Developmental Disabilities Assistant and Bill of Rights Act of 1990: “Defines developmental disabilitiy as a severe, chronic disability of a person who is 5 years of age or older. The impairment must be: 1) attributable to a mental or physical impairment or a combination thereof; 2) manifested before the person attains age 22; 3) likely to continue indefinitely; 4) result in substantial functional limitations in three or more areas of life activity (self help, receptive and expressive language, learning, mobility, self direction, capacity for independent living, and economic self-sufficiency; and 5) reflect a person’s need for a combination of and sequence of special interdisciplinary or generic care treatments or other services that are lifelong or extended in duration and are individually planned and coordinated; except that such term, when applied to infants and young children, means individuals from birth to age 5, inclusive, who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities, if services are not provided. (Gardner and Chapman, 1 developmental disabilities 993) p.6.
There are five disabilities that are commonly grouped together and called developmental disabilities. These are: 1) autism, 2) cerebral palsy, 3) epilepsy, 4) mental retardation and 5) any other condition requiring care similar to that of a person who is mentally retarded.
Now I want to provide the reader with some accurate definitions of these disabilities:
Autism: a pervasive lack of responsiveness to other people, gross deficits in language and communication, bizarre responses to the environment, absence of delusions and hallucinations, with onset before 30 months of age.
Cerebral Palsy: a disorder dating from birth or early infancy, cannot progress, characterized by examples of aberrations of motor function (paralysis, weakness, uncoordination.) Also, often there are other manifestations of organic brain damage, such as sensory disorders, seizures, mental retardation, learning difficulties and behavioral disorders.
Epilepsy: clinical disorder characterized by single or recurring attacks of loss of consciousness, convulsive movements, or disturbances of feeling or behavior; these transient episodes are associated with excessive neuronal discharges.
Mental Retardation: significantly below average general intellectual functioning existing concurrently with deficits in adaptive behavior manifested during the developmental period.
By Rick Eastin
Here we will look at some of the trends in the care and treatment of persons with developmental disabilities. Further, we will look at the current empowerment paradigm in light of the Biblical mandate to care for “the weak.”
According to public law (101-406) the Developmental Disabilities Assistant and Bill of Rights Act of 1990: “Defines developmental disabilitiy as a severe, chronic disability of a person who is 5 years of age or older. The impairment must be: 1) attributable to a mental or physical impairment or a combination thereof; 2) manifested before the person attains age 22; 3) likely to continue indefinitely; 4) result in substantial functional limitations in three or more areas of life activity (self help, receptive and expressive language, learning, mobility, self direction, capacity for independent living, and economic self-sufficiency; and 5) reflect a person’s need for a combination of and sequence of special interdisciplinary or generic care treatments or other services that are lifelong or extended in duration and are individually planned and coordinated; except that such term, when applied to infants and young children, means individuals from birth to age 5, inclusive, who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities, if services are not provided. (Gardner and Chapman, 1 developmental disabilities 993) p.6.
There are five disabilities that are commonly grouped together and called developmental disabilities. These are: 1) autism, 2) cerebral palsy, 3) epilepsy, 4) mental retardation and 5) any other condition requiring care similar to that of a person who is mentally retarded.
Now I want to provide the reader with some accurate definitions of these disabilities:
Autism: a pervasive lack of responsiveness to other people, gross deficits in language and communication, bizarre responses to the environment, absence of delusions and hallucinations, with onset before 30 months of age.
Cerebral Palsy: a disorder dating from birth or early infancy, cannot progress, characterized by examples of aberrations of motor function (paralysis, weakness, uncoordination.) Also, often there are other manifestations of organic brain damage, such as sensory disorders, seizures, mental retardation, learning difficulties and behavioral disorders.
Epilepsy: clinical disorder characterized by single or recurring attacks of loss of consciousness, convulsive movements, or disturbances of feeling or behavior; these transient episodes are associated with excessive neuronal discharges.
Mental Retardation: significantly below average general intellectual functioning existing concurrently with deficits in adaptive behavior manifested during the developmental period.
Levels of retardation are:
Mild mental retardation: a term used to describe the degrees of retardation present when intelligence test scores are 50 to approximately 70. Many mildly retarded (able to be educated) individuals who function at this level can usually master basic academic skills whereas adults at this level may maintain themselves independently or semi-independently in community life.
Moderate Mental Retardation: a term used to describe the degree of retardation when intelligence test scores range from 35-40 to 50-55. Many trainable individuals function at this level; such individuals usually can learn self-help, communication, social and simple occupational skills (but only limited academic or vocational skills.)
Severe Mental Retardation: a term used to describe the degree of retardation when intelligence test scores range from 20-25 or 35-40. Such persons require continuing and close supervision. However, they may perform self-help tasks and simple work tasks under supervision. This level is sometimes referred to as dependent retardation.
Profound Mental Retardation: a term used to describe the degree of retardation present when intelligence test scores range from 20-25. Such persons require continuing and close supervision, but some may be able to perform simple self-help tasks. Profoundly retarded persons often have other handicaps and require an aray of support systems to maintain quality of life. (Grossman, 1983)
As a general rule, in adulthood, persons who are mentally retarded function at the following levels. Persons at the mild level of retardation reach the cognitive ability of a 8-12 year year old. Persons at moderate level, function at a cognitive ability similar to that of a typical 5-8 year old. People at the severe level, mentally function as a 3-5 year old. People at the profound level, generally function at below that of a 3 year old child. (Grossman 1983)
Based on the above definitions, it may seem that these levels can be quite limiting to both children and adults. Upon first glance, it may appear as though these developmental limitations preclude these individuals from being able to participate in numerable social roles and activities.
Now allow me to change our focus specifically onto adults with intellectual disabilities. For people of all belief systems, we view children as the means to continuing our society in the future; this value can seem to be upside-down for parents of a child with a disability. The reason for this dilemma is that parents in these circumstances often face the lifelong responsibility of having to parent their dependent child with special needs in a protective manner throughout their adult life. Whereas the parents of typical children need to parent them for approximately 20 years, as their children transform into independant and interdependent adult lifestyles.
Sometimes parents of a child with a disability actually experience the emotions of someone who has experienced the death of a loved one. (Duckworth, 1988; Wheeler, 1983) Such an event as having a child with developmental disabilities very often causes a parent to ask philosophical questions: Why do bad things happen? Who is to blame? Can my family make it through such an ordeal and have a good family life?
Another aspect that families of persons with developmental disabilities have to deal with is the need to look to others for help. Since most of the families don't have the knowledge they need to deal with a developmental disability, they look to the medical and the social services communities to aid them. It is within this context that I will examine why and how such services have developed in North America to the point where they are today.
Just as persons with developmental disabilities perplex their families, so they are also creating dilemmas for the wider culture. Our culture views persons who will never be able to assume adult social economic roles from a deficit perspective instead of an asset perspective. This is the fundamental belief that drives services for persons with developmental disabilities.
Formal care for person with mental retardation in the United States started in 1848, when the first state institution was opened for children who were mentally retarded. This started a trend that saw the establishment of institutions throughout the country. The premise behind this was that such individuals could be rehabilitated and then returned to the community as productive citizens. These developments were occurring in the context of a philosophical worldview known as "modernity." This is a perspective which believed there are no limits to progress for humankind. (Nash, 1987)
However, by the early 1900’s, this optimistic view gave way to a pessimistic one. For people functioning at the lower to moderate levels, this outlook resulted in the function of these institutions being transitioned from being rehabilitative. This was done to persons on these levels due to the fact that they did not respond well to educational programs. It was also believed that persons with mental retardation were responsible for high rates of criminality, immorality and poverty. This belief led to development of the eugenics movement, in order to prevent the destruction of nation’s gene pool (MacMillan, 1982). This belief also caused moving institutions to rural areas. These places were designed to be self contained although it did not work this way. The function of institutions changed from one of trying to educate these persons to one of using these places to protect society from people who are mentally retarded, similar to a prison. This phase of thinking reached its high point between the years of 1912-1917.
From 1917 on, different developments emerged to show that the ways people with mental retardation were being cared for was based on unfounded facts. Research started to emerge that people with these disabilities were, in fact, able to live in typical social communities. It was found that assumptions between mental retardation and anti-social behavior were based on faulty research. (Gardener and Chapman, 1993)
A transition started to occur in the years of 1930-1950 as parent groups then started to organize to advocate on behalf of their children with mental retardation. These parents became increasingly concerned after World War II because more and more children with severe mental retardation were being admitted to institutions. Before World War II most admissions were adolescents with mild retardation. In 1950 the National Association for the Retarded was formed and this organization played a key role in the movement that came to be known as deinstitutionalization; in other words, taking persons who are living in institutions and place them primarily in homes in the community. One of the primary reasons for this movement was the dehumanizing living conditions in the institutions.
There were three other areas that parents organized around as it related to their children: 1) education, 2) adult services, and 3)residential services. Parents put pressure on local school boards and state governments to provide educational services for their children who functioned at the moderate and/or below level. Adult services consisted of two types of programs: 1)sheltered workshops. These are places where they basically do piece work and 2) work activity centers for low functioning individuals to work in a workshop setting. Different living arrangements were started based on type of needs and level of disability. The first being "independent living." These arrangements are broadly defined. Persons living in these places are high functioning. Other arrangements offering a greater level of support provide room and meals only. Group homes provide supervision for people who are lower functioning. The third type of residential setting is called an intermediate care facility for mentally retarded and developmentally disabled persons with medical needs. (Summers, 1986)
The 1970’s were a time of great change for persons as the deinstitutionalization movement was picking up momentum. Parallel to this movement research was being done at university levels that demonstrated that people with mental retardation could learn to do things previously thought too difficult. Through the use of behavior modification persons with moderate or severe retardation were being taught to do complex assemblies. This same technology was being used to teach skills like toileting, eating and personal hygiene among others. (DuRand and Newfeldt, 1980)
Another significant development occurred and this was an ideological response to people. It was called the principle of normalization. Dr. Wolf Wolfensberger is architect behind the principle of normalization. Previously the focus was providing needed services in the community. (Heal 1988, Wolfensberger, 1980, and 1992) The focus of normalization is on providing services in the most culturally valued way possible, while getting these persons to behave in ways that are highly esteemed by the general culture. According to Dr. Wolfensberger, it is not enough to ask people without disabilities to accept persons with mental retardation; for true acceptance to occur the person without the disability must experience the encounter in a positive way. (Wolfensberger, 1983) This philosophy of Dr. Wolfensberger, though in its infancy rejected, within a short time found acceptance within the professional community. From the 1970’s many others in the field of mental retardation started to think this way. A big part of this ideology was to treat persons with mental retardation according to their chronological age rather than their mental age. This segmented the professional community into two camps: those in the value camp and those in the research camp.
For those in the values segment community, the goal of working with a person’s mental retardation is to see these people become socially integrated into the society. Dr. Thomas Haring, who represents the Association for Persons with Severe Handicaps, says “social integration is defined as the full participation in social interactions within natural environments to the ultimate extent that the people encounter within that environment and as such is a part of a stable network. (Haring, 1991) Dr. John Dattio (1991), who represents the APSH organization, said, “It is extremely important for individuals with severe disabilities to develop age appropriate, community based leisure skill repertories to facilitate successful integration into the community”.
Persons who are in the research camp are anchored in the empirical tradition and are dependent on standardized tests as tools for client assessment of persons with mental retardation. This approach is also based on pre-supposition and is known as the medical model, which views mental retardation as an objective entry. (Ziger, et al. 1990)
Now, to examine the research methodologies of each camp: those in the values' side use both quantitative and qualitative methods. For those in this camp, mental retardation is a social problem and it holds people back from having a quality life because those that work with them expect so much more from them than what they can give. (Gardner and Chapman, 1991) These persons have used the political process to help secure what they perceive to be justice for persons with mental retardation. In the mid 1980’s legislation was passed and introduced what is known as “supported employment”. This is defined as a “…pair work in a variety of settings, particularly regular work sites, especially designed for handicapped individuals, 1) for whom competitive employment at or above the minimum wage is unlikely; 2) who, because of their disability, need ongoing support to perform in a work setting”. (Federal Register September 25, 1984) They have also sought to change the whereabouts of where children and youth with mental retardation are educated and where these persons live. These persons have introduced what they call full inclusion in the area of education, and supported living for adults. Starting in the late 1980’s student with all types of disabilities started to receive education in the regular classroom. This means proving students with the extra services they need in the regular classroom. (Giangreo, Putnam, 1991) Many parents and professionals view this inclusion of children with all types of disabilities as a civil rights issue. (Kauffman and Hallan, 1995) In this realm were adults with mental retardation. The concept of supported living introduced by definition means having these persons living in their homes while providing them with the support they need to do so. Federal money has been provided for this kind of situation for persons with mental retardation since 1990. (Racino, 1993) In all three of these models the key concept is that support is provided to these people to help them do what they cannot do on their own.
Those in the values camp reject the concept of mental ages that I have previously outlined. Instead of viewing people according to "normal developmental stages" perspective; they favor teaching these people by using "behavior modification." They rely on quantified research methods to justify their ideal outlook for persons with mental retardation; this means that their research is interpretative. Persons in this camp view the scientific community as putting roadblocks in the way of having people with mental retardation live integrated lives. (Taylor and Bogdan, 1994)
Others, who operate in the scientific camp, tend to be conservative in their outlook about how much people with these "problems" tend to agree with the concept of mental ages, as I have outlined above. The people in this camp are much more open to the need for specialized services for mental retardation. These people tend to rely on quantitative research methods to substantiate their claims. The reason they reject much of ideology of the values camp is that it lacks a sound research basis. The persons in the values community look at things through the lens of those without disabilities, and then try to have people live life through that grid. From their perspective they are empowering these people to be able to make choices that will give them social acceptance in the mainstream. In contrast those in the science community lean toward viewing life through the eyes of persons with mental retardation. They would see their condition more as a cognitive difference rather than a disability.
As a person who has watched the values community over the past number of years while working and befriending persons with mental retardation, I have made the following observations: The community say they are giving them ????? However, they will not support them when they are not able to operate and function at "normal societal levels" ???? For lack of a better analogy, this is like comparing how a luxury vehicle drives to an economy car, both are valuable in their own way. One is not good and the other bad. They both have their place for different reasons. In the same way, it would be unfair to consider all persons working in the field of mental retardation as subscribing to current integrated ideology. On the other hand, the promoters of this ideology have one goal, and that is to see their vision for persons with mental retardation to be the socially accepted norm (without leaving room for other perspectives or a more ballanced approach.)
Work is a gift of God’s common grace, and because all people are made in His image, we derive satisfaction from this. See Ecclesiastes 1:31. As Chuck Colson and Jack Eckerd (1991) point out, we have an innate need to engage in meaningful work. Since the 1960’s there has been significant research from state university-affiliated programs; the programs provide research about best practices in developing community living settings for persons with mental retardation. Research that was done until the late 1970’s about working with these people was done in the context of modernity paradigm. However, in the early 1980’s research started to be derived from a postmodern/qualitative paradigm.
The people who work with persons with mental retardation are caught in between a rock and a hard place because what they are able to accomplish with them is not that impressive when measured through the lens of empiricism. Just because this is true does not mean this God-given need will go away; rather it leaves a void that longs to be filled. One of the themes in the writings of Dr. Francis Schaeffer was that people need meaning in their lives so much so that they will have an optimistic outlook on life even when there is no rational basis for holding to such a view. (Schaeffer, 1982)
In the mid 1970’s the education of persons from moderate through the profound levels of mental retardation was still being questioned by both those in regular education and special education. At this time each of these sectors doubted that disabled persons could profit from education. It was within that cultural context that those in the values camp started to formally organize in the mid 1970’s. By their own admission the reason the values community held the ideology is they wanted to see what they considered to be more meaningful outcomes for people with mental retardation (i.e. social integration).
Our culture as a whole at this time was undergoing a transition toward an ethic of self-fulfillment, thus people wanted to change things that were not pleasurable to them. It is worth noting that persons who were formulating the values perspective on this issue were from a higher educational background; the reason this is important is because this ethic of self fulfillment started at the university level and filtered its way into the common populace. (Wells, 1993)
In the mid 1970’s the term “developmental disabilities” started to be used in the way outlined above as legislation passed at the federal level. During the first part of the 1970’s two very significant pieces of legislation were passed, the first was the Rehabilitation Act of 1973. This law made it illegal for any public entity receiving public money to discriminate in any way on the basis of disability.
The next significant piece of legislation was the Education for all Handicapped Children Act of 1975. This act guaranteed that all children receive a free and appropriate education in the least restrictive environment. What the meant is that people with all kinds of disabilities, whenever possible, should be in a regular classroom. At that time mainstreaming was being practiced based on the student’s ability to perform in a regular classroom. Students who were not able to perform were provided with education in a separate self contained classroom on a public school campus.
During the late 1960’s and into the 1970’s there was also the civil rights movements among those that were physically disabled who wanted to get into the cultural mainstream. This is what is known as the “independent-living movement”. These persons wanted to take control of their own lives; the basic philosophy is that these persons could and should manage their own lives. These people rejected the concept of seeing themselves as “sick” people, but instead perceived themselves as human beings who, when given assistance could be a part of mainstream society. For these persons, independence is not defined by what people can do for them, but rather how much control they can have over how they chose to live their lives. These same people started their fight for civil rights on the same level as other minority groups who were also advocating for civil rights. (Shapiro, 1994)
These pieces of legislation, along with the independent living movement, paved the way for those in the values camp to start to lump all disability issues together. In the early 1980’s the mix of factors came together politically: we had a very conservative administration and the ideology of those persons from the values camp fit together in a strong way. This administration’s emphasis on less government was a hand-in-glove fit with the emphasis of the values camp. Both of these social sectors were able to feed off of each other – those in the value’s camp could point to the fact that having persons with mental retardation and other developmental disabilities work at real jobs and attend regular schools helped get more out of our tax dollars. Meanwhile politicians could state that by having persons with mental retardation in regular schools and real jobs they were increasing the self sufficiency of this culture.
This group points out that the limitations of a person’s mental retardation is a reason why they cannot participate in certain aspects of the mainstream life, which they claim is oppressing them. Since people in the values camp use qualitative methodology to justify their position, this means that much of their augments for social integration of people are based on their subjective view of reality. And their view of reality says one’s quality of life is determined by how well one is plugged into the social mainstream. This is a very interesting point, in my opinion.
The generation of persons who are in positions of leadership at the university level, special educators, psychologists, social workers and other fields related to mental retardation are typically baby boomers. Research on this particular group shows that these people like life to be practical, and they turn away from things that they don't view as useful. (Barna, 1990, Murren, 1990) It seems to me that the mind set of this generation in combination with emphasis on self-fulfillment is fueling this focus on self integration. Both of these mind sets are like a single coin which has two sides. The way that this plays out is that because the limitations inherent with mental retardation often preclude these persons from achieving normal developmental milestones, this makes their work with these people often impartial . As a society we have turned to the public university to help us deal with our social needs and problems. The aim of this is based on an assumption that we can find practical solutions to the dilemmas that confront us as a society through the universities. Although this is their intended function, this simply is not the case. There is no such thing as objective truth at the university level. Given this cultural reality, what gets past as a solution is whatever seems to works at the time (i.e. pragmatism).
I will now examine how the ideology of the values camp is impacting families of persons with mental retardation. Having a child who is mentally retarded may mean the death of some common parental dreams for that child; it means having to readjust one’s expectations for that child. Both parents and professionals agree that this is a source of grieving for parents, and for some parents it never stops having an effect because they have not internally accepted it. (Hawley, 1981) Based on my research, parents generally have two different modes of response to having a child who is mentally retarded: one is what I call “reality based thinking” and the other is what I call “misplaced opposite”. Parents who have a realistic view are the parents who, as a general rule, go through the same stages of grieving as do persons who experience the death of a loved one. To their credit, persons in the values camp are right to point out that grieving is often treated as a pathological response and therefore, something to get over. The ability to grieve is a gift from God. Jesus modeled this for us in his response to the death of Lazarus; this is a very profound verse, for it tells what our response to tragedy should be, therefore, that grieving is to be viewed as pathological.
Parents of persons with mental retardation and other developmental disabilities who embrace the “ideology values” want to downplay the grieving aspect of having a child with these kind of disabilities (Strully, 1994) One of the reasons for the difference in reactions may be that many parents and professionals have gone on to be trained in the university level in different disciplines related to mental retardation. Modernity has been the prevailing worldview on the university campus. That outlook taught us that we do not have to accept limitations and we can find ways to overcome our problems: no longer are “problems, as such, but they are called “challenges” to be overcome. Some of these parents are in positions of leadership with local agencies that serve people with mental retardation and other developmental disabilities. As a result, these agencies are under pressure to change meaning, to embrace the ideology of the values camp.
Another major difference between these two groups of parents is that those who hold to a reality based perspective tend to accept the limitations of their children. On the other hand, parents in the values camp want to continually push the boundries of what their children accomplish. As people who bear God’s image, we are designed to respond to tragedy in a way that admits the pain. I believe response to tradgedy is one aspect that is included when scripture teaches about doing things by nature in Romans 2:14. In the life of Jesus we read how he showed emotions in different contexts and some of these were in the face of tragedy. I believe it fair to say persons who are in the values camp are denying a part of their humanity.
Often parents who hold a reality-based view of their children are seen as putting up roadblocks to their progress because they do not have high expectations for them. Another aspect of what it means to be made in the image of God has to do with how we respond to those who are weak; I believe it is fair to say because we are partakers of general revelation, parents in general have a tendency to view their adult children in a protective manner. Not all, but a good number of people who are not Christians still have within them a sense of protecting and looking out for those who are weak: this is a product of God’s common grace. I also believe it is fair to say that the reason so many parents in the reality based camp reject much of values camp ideology is that it violates what is best for their children. In Romans 1:18 we find that people suppress the truth in uprightness; it seems to me these persons in the values camp are doing so because they are unwilling to accept the limitations that are part of the condition known as mental retardation. The reason these parents have been brought into this line of thinking is that as a society we have been drifting away from any sense of transcendent moral order; instead truth is found in one’s personal experience. As noted before, some parents have sought a higher education from many different sources and concur that there is no such thing as truth at this level of our society, but only that which we perceive as true for us. In 1976 Francis Schaeffer said that we as a culture have bought into the impoverished values of a person’s space and audience. I think this portrays the outlook of these parents. (Schaeffer, 1981) This group of parents have been greatly broken by having a child who is mental retarded; however they often refuse to accept what has been given to them by the hand of God. Because many of the advocates of this ideology have gone through secular universities, where for the most part, there is no such thing as objective truth, but rather truth is seen as a matter of personal preference. This has opened the way for people to start experimenting with ways to provide services for persons with mental retardation. Another reason for this type of thinking is that we as a society do not view persons as uniquely created by God, but rather we view them simply from a materialistic perspective.
Now I want to look at how mental retardation relates to being made in the image of God. This is important because all that we do is related to the use of our intellect and almost all that we express is a facet of our being created in the image of God. One could say that all uses of our intellectual, emotional and aesthetic functions are an expression of the image of God.
From a Biblical perspective, mental retardation is considered a sickness, because it hinders the degree to which one can participate in the cultural mandate. On the other hand, all persons participate in the curator mandate to one degree or another. We can counter this for the following reason: 1) Acts 10:34 God is no respecter of persons. 2) ?????????? 3) every life is a wanted life, see Acts 17:26. People in the church today tend to take extreme positions concerning the subject of divine healing. On one side (the side where those say without exception it is always God’s will to heal at all times); and then those who claim God does not work that way today. (According to Ken Blue and Wayne Grudem, we only have to look at how Jesus responded toward sickness to understand God’s perspective toward sickness: he hates it because it is part of the fall. We are confronted, however, with a dualism in scripture because it states that although God hates sin and all its results, he permits evil to be a part of our experience in this world. In the books of Amos 3:6, Isaiah 45:7, and Psalms 115:3 we find that God uses evil to serve his own purposes. So when confronted with affliction such as mental retardation we should ask in faith for healing, but if it does not happen we need to know that he will work through the affliction to bring glory unto himself. When we see this happening we are seeing the cornerstone principle which is that He uses the very affliction itself to defeat sin and Satan. This is what happened through the cross. It was meant by Satan to destroy Jesus, however, it is through the cross that victory was won. The cross became the foundation for our salvation. Colossians 1:16 tells us that Jesus holds all things together and that they exists because he has permitted them to exist. This would include the different stages of development that persons with mental retardation reach.
One of the major ways we learn about the world is through creation. Through the study of the world about us we draw conclusions because we are free under the Lordship of Jesus. The scope of our inquiry covers every facet of exploration that humans are capable of. Because this is true, this would also include our inquiries about the nature and ramifications of what we call “mental retardation” . There are those in the values community who consider mental retardation to be a social construction. In contrast to the advocates of this view I argue that there is something objectively known as “mental retardation”. (Biklen and Duchan, 1994) The reason we are able to make this distinction is that there are persons whose intellectual abilities are very limited and this condition hinders the degree to which they can participate in different aspects of the cultural mandate. Notice I said “limited”, not unable to participate in the cultural mandate. I believe because God is no respecter of persons we are starting to participate in the cultural mandate from the moment we are born. We tend to think of children as getting ready for adulthood; however, because God is no respecter of persons, this means that each stage of human development is of equal value to him. This also means that children and/or persons with mental retardation are able to be players in the cultural mandate no matter where they are developmentally. We are to view every developmental stage as a treasure in and of itself and not simply as a means to an end… (i.e. as opposed to treating the "normal" stage as the only treasure)
I will now examine the concept of empowerment as it relates to persons with mental retardation from a Biblical perspective. First of all, there are degrees of empowerment. Scripture talks about this in Genesis when God says “for this reason a man should leave his father and mother”: I understand that it is talking about marriage, it is also implied in this statement is that a person starts to leave home long before the person actually does. As the person moves through the normal progression of developmental states, they become less dependent on others for meeting their needs and are able to assume more complex personal and social roles. As they take on these different roles, they are becoming more empowered in the sense that they are gaining more control of their lives. This is what I call proportional empowerment, as the degree of ability grows the level of control is expanded. Jesus talks about this kind of empowerment in Matthew 25:15, when he talks about giving talents according to the ability of the servants. Because there are many different levels of mental retardation, these persons obtain different levels of empowerment according to their abilities. This scripture shows us that God is a God of reason, and reason dictates. He does not ask more of us than what we are capable of. Also, there are many other cases that speak of the importance of reason, (see Isaiah 1:18, Romans 12:2, James 3:17-18.) Although these passages do not specifically mention reason, the thought is definitely implied: our ability to reason is fundamental to what it means to be made in the image of God. The ability to reason is also a product of our human development. So that although our reasoning ability is very important, what makes us human is that God gave all persons the breath of life (Acts 17:26). However, to the degree that we are able to develop intellectually, we are able to take on different social responsibilities.
From a Christian perspective the topic of empowerment needs to be examined within the context of one’s ability to assume responsibility. Carl Henry points out that human rights cannot be separated from human responsibility. He points out that human rights and human responsibility are like two sides of the same coin (Henry, 1988). As we have seen, there is something that we can rightfully call mental retardation (meaning limited intellectual ability.) From a Biblical perspective it is right for parents of a child to restrict their child’s participation in activities they know the child does not have the ability to succeed in (or even be safe in.) Making informed decisions regarding their involvement in certain activities may be well beyond that child's ability discern. Within the context of the Bible, regarding human rights, parents have to do this for two reasons: one is simply to ensure social order, and the other is for moral reasons. If parents did not restrict children in this way we would have social chaos, and on a moral level this is a violation of general revelation. The advocates of the values camp talk about giving persons with mental retardation choices, yet deny the fact of how these persons perceive the world because of their limited abilities.
The methods these persons use are quite questionable from a Christian perspective. These persons rely very strongly on “behaviorism” for teaching persons with mental retardation. Many Christian thinkers have pointed out serious problems with this worldview. (Geisler, 1983; Jones & Butman, 1991; Noebel, 1991; Schaeffer, 1981) There is a delicate balance that needs to be maintained here. We have to use some of this philosophy with very young children. An example of the right use of this teaching method would be a child that learns by route to go to the next door, or a person who functions at a 2-3 year old level as an adult and has to learn to put their dirty clothes in the hamper. However, there is a great difference between teaching someone how to perform a task and the denying fact that how we perceive the world is in a large measure based upon our intellectual development. The topic of choice is also related to one’s level of intellectual development. Also, the understanding of choice is directly related to our being made in the image of God. When we make choices this is an expression of the image of God. We see this very clearly when God told Adam to give names to the animals. He was telling Adam to exercise his power of choice.
From a Biblical perspective, the understanding of choice is also proportional to one’s ability to understand. Just as we saw, parents must restrict the activities when their child has a lack of ability to understand those activities. So, we must restrict activities of a person with mental retardation when they do not understand the activity or are unable to process its ramifications to themselves and others. It is quite common to hear persons that work in the field say things like, “label jars, not people”, however the ability to classify and discriminate is a God given ability. These are vital skills to provide a stable social order. We see in the creation account that he divided the night from the day. In the New Testament Paul uses discriminating terms. There he talks about stronger and weaker (i.e. we need each other, but he acknowledges the differences between the weak and the strong. (see 1 Corinthians 12:12-26)
In the parable of the Good Samaritan we see that those persons had to have skills to determine what course of action needed in that situation. First, the Samaritan had to access the situation to determine what needed to be done. This meant doing some things as opposed to choosing to do others. This ability to discriminate in a healthy manner is part of what it means to be made in the image of God. We have already seen that from a Biblical viewpoint mental retardation would be considered a sickness. We have also seen that parents have to restrict the activities of their children when they are too young to understand the consequences of their actions.
So, we understand that from both a moral perspective and from a pragmatic viewpoint, it is necessary to restrict the rights of persons with mental retardation. For, to not do so would be a violation of general revelation and would lead to social chaos. From a Biblical perspective, we need to help persons with mental retardation in accordance with their abilities. We need to help them become empowered according to their level of understanding. Persons holding to the values position, no matter how well intentioned they may be, are pushing an ideology that isn't based on fact. Scripture clearly teaches that every good and perfect gift is given to us by our Heavenly Father (this includes the study of human development.)
Through interactions with persons, we discover that there is a great variation in the abilities of persons with mental retardation. Therefore, the needs are very diverse. We are designed to respond to certain situations in particular ways. When we do not, we violate general revelation. For the most part, people respond to persons who for whatever reasons do not act as adults with a sense of care and protection, and so we are acting in accordance with the way we were designed to function. Persons in the value camp want to change the behavior of persons with mental retardation so that people without disabilities will want to interact with them. Their reasoning is that persons with mental retardation are being treated by others with distain because of their abherent (or different) behavior. These condescending attitudes are held up as the "norms" of our "society." The sole solution in this "unacceptable" situation is to drive those with disabilities to disguise their disabilities in order to placate the arrogant "norms" of society at large. They do not want those with mental retardation to be seen as weak and needy. Rather, while they admit that these persons have needs that others with don’t have, the important thing in their mind is the socially valued roles that these people can attain. It is unreasonable to ask and/or think that people should respond to mental retardation in this fasion. The reason for this is that as we’ve seen from a Biblical perspective mental retardation is considered a sickness. Because we are created in God’s image, we were designed to respond to the “abnormal” with empathy, sorrow and compassion. We see when Jesus was at Lazarus’ tomb, he wept. The reason he did this was because it was His response to that which was abnormal. In their effort to view mental retardation through rose colored glasses, those in the values camp are asking people to deny their God given response to tragedy.
Children are gifts from God. They are meant to be a blessing to their families and others. Core scriptural truth applies to all children no matter how disabled they may be. Considering how perplexing it is for parents to have a child with mental retardation, one can see why parents would want to hold to the view that the values camp embraces. However, as Christians, we need to help these children develop according to their God given potential and also accept the limitations that are part of mental retardation. The reason the church needs to concern itself with this topic is threefold: 1) the family, 2) care of the weak, and 3) dissemination of correct knowledge.
It is often in times like these that a family will turn to the church for direction. The church needs to be a knowledgeable resource to them and/or know where to point these families for further help. The fundamental need is to help each parent see that child from a Biblical paradigm (no matter how old or disabled the child is.) God told Abraham I have blessed you so that you will be a blessing to others. This truth applies to parents with a child who is afflicted with mental retardation. These parents need to know that the way their child ends up being a blessing to others will probably be different than they had previously expected. However, the fact that their child will be a blessing to others is without a doubt!
We are living in a society that doesn't want to discriminate against anyone in any way. However, as we have seen, it is an aspect of expressing God’s image to make intellegent discriminations. Although I believe strongly that all people are created equal, we are not equal in our abilities. It is right for us to draw conclusions based upon our empirical observations that follow from persons being mentally retarded. To the degree that we understand mental retardation, we can help them be all God intends for them to be. Persons in the values camp are going against general revelation. For to simply interact with persons who are mentally retarded is to know that these persons have limitations. At the very highest level, they may function at about that of a 12-13 year old child. We would be hard pressed (even at this level) the abilty to assume the total responsibilities of adult roles. Yet this is the kind of unrealistic burden that often gets placed upon persons with mental retardation.
There is a need for the people of God to struggle with these issues and speak up for those who the Bible has no problem calling “weak”. If people are not willing to speak truth concerning the treatment and care of persons with mental retardation, this creates a vacuum that is filled with the values camp ideology. To let these people be treated in a way that does not reflect God’s best for them, is not what the Bible has in mind.
References
Barna, George, (1990) The Frog in the Kettle: What Christians Need to Know About Life in the Year 2000. Ventura: Regal Books.
Biklen, D. & Duchan, J.F. (1994) I Am Intelligent. The Social Construction of Mental Retardation. The Journal of the Association for Persons with Severe Handicaps. 19, 173-184
Colson, C., & Eckerd, J (1991) Why America Doesn’t Work. Dallas: Word Publishing.
Dattilo, J. (1991) Recreation and Leisure: A Review of the Literature and Recommendations for Directions. In L. H. Myer, C. A. Peck & Lou Brown, (Eds.) Critical Issues in the Care of Persons with Severe Disabilities. Baltimore: Paul Brooks Company 171-194
Dick Marion, (1988) Families of Handicap Children. Elgin: David C. Cook Publishing.
Gardner, James F., & Chapman, Michael S. Developing Staff Competencies for Supporting People with Developmental Disabilities: An Orientation Handbook, Second Edition. Baltimore: Paul H. Brooks Company.
Geisler, Norman L. (1983) Is Man the Measure: An Evaluation of Contemporary Humanism. Grand Rapids, Baker Books.
Grossman, Herman J. (1983) Classification in Mental Retardation. Washington, DC: American Association on Mental Deficiency.
Grudem, Wayne A. Systematic Theology: An Introduction to Biblical Doctrine, Grand Rapids: Zondervan.
Haring, Thomas G. (1991) Social Relationships. In L. H. Myer, C A. Peck & L. Brown (Eds.) Critical Issues in the Lives of Persons with Severe Disabilities, Baltimore: Paul H. Brooks Company.
Hawley, Gloria (1981) Families and Friends of the Handicapped. Joni and Friends, Joy in Caring Seminar.
Henry, Carl, F.H. (1988) Twilight of a Great Civilization. Westchester: Crossway Books.
Jones, Stanton L., & Butman, Richard E. (1991) Modern Psychotherapies. Downers Grove: InterVarsity Press.
Murren, Doug. (1990) The Baby Boomerang: Catching Baby Boomers as They Return to Church. Ventura: Regal Books.
Nash, Ronald H. (1987) Evangelicals in America: Who They Are and What They Believe. Nashville: Abingdon.
Nobel, David A. (1991) Understanding the Times. Manitou Springs.
Pomerantz, David J. & Martholin, David, II (1980) Vocational Habilitation, a Time for Change. In R. J. Flynn & k.E. Nitsch (Eds), Normalization Social Integration and Community Sevices. Austin: Pro-ed, pp. 259-282.
Racino, Julie A. (1993) Opening the Doors: The State Role in Housing and Support. In J. A. Racino, P. Walker, S. O. Connor and S. J. Taylor, Housing Support and Community: Choices and Strategies for Adults with Disabilities. Baltimore: Paul H. Brooks.
Schaeffer, Francis (1987) The Complete Works of Francis Schaeffer: A Christian Worldview. Westchester Crossway Books.
Shapiro, Joseph P. (1994) No Pity: People with Disabilities Forging a New Civil Rights Movement, New York.
Strully, Jeffrey, (1994) Video presentation given in Fresno, California.
Taylor, Steven J. & Bogdan (1994) Qualative Research Methods and Community Living. In Mary F. Hayden & Brian H. Avery (Eds.) Challenges for a Services System in Transistion: Ensuring Quality Community Experiences for Persons with Developmental Disabilities. Baltimore: Paul H. Brooks.
Wheeler, Bonnie (1983) Challenged parenting: A Practical Handbook for Parents of Children with Handicaps. Venture: Regal Books.
Wells, David F. (1993) No place for Truth: Or Whatever Happened to Evangelical Theology. Grand Rapids: William B. Eerdmans.
Wolfensberger, Wolf (1980) The Definition of Normalization Update, Problems, Disagreements and Misunderstandings. In R. J. Flynn and K. E. Nitch (Eds.) Normalization and Social Integration and Community Services, pp.71-116.
Wolfensberger, Wolf (1992) A Brief Introduction to Socaial Role Valorization: As a Higher Order Concept for Structuring Human Services. 2nd revised. Syracuse, N.Y.: Training Instittue for Human Services, Planning, Leadership and Change Agency.
Ziger, E. Hodapp, R.M. & Edison, M. R. (1990) From Theory to Practice in the Care and Education of Mentally Retarded Individuals. American Journal of Mental Retardation, 95, 1-12.
Moderate Mental Retardation: a term used to describe the degree of retardation when intelligence test scores range from 35-40 to 50-55. Many trainable individuals function at this level; such individuals usually can learn self-help, communication, social and simple occupational skills (but only limited academic or vocational skills.)
Severe Mental Retardation: a term used to describe the degree of retardation when intelligence test scores range from 20-25 or 35-40. Such persons require continuing and close supervision. However, they may perform self-help tasks and simple work tasks under supervision. This level is sometimes referred to as dependent retardation.
Profound Mental Retardation: a term used to describe the degree of retardation present when intelligence test scores range from 20-25. Such persons require continuing and close supervision, but some may be able to perform simple self-help tasks. Profoundly retarded persons often have other handicaps and require an aray of support systems to maintain quality of life. (Grossman, 1983)
As a general rule, in adulthood, persons who are mentally retarded function at the following levels. Persons at the mild level of retardation reach the cognitive ability of a 8-12 year year old. Persons at moderate level, function at a cognitive ability similar to that of a typical 5-8 year old. People at the severe level, mentally function as a 3-5 year old. People at the profound level, generally function at below that of a 3 year old child. (Grossman 1983)
Based on the above definitions, it may seem that these levels can be quite limiting to both children and adults. Upon first glance, it may appear as though these developmental limitations preclude these individuals from being able to participate in numerable social roles and activities.
Now allow me to change our focus specifically onto adults with intellectual disabilities. For people of all belief systems, we view children as the means to continuing our society in the future; this value can seem to be upside-down for parents of a child with a disability. The reason for this dilemma is that parents in these circumstances often face the lifelong responsibility of having to parent their dependent child with special needs in a protective manner throughout their adult life. Whereas the parents of typical children need to parent them for approximately 20 years, as their children transform into independant and interdependent adult lifestyles.
Sometimes parents of a child with a disability actually experience the emotions of someone who has experienced the death of a loved one. (Duckworth, 1988; Wheeler, 1983) Such an event as having a child with developmental disabilities very often causes a parent to ask philosophical questions: Why do bad things happen? Who is to blame? Can my family make it through such an ordeal and have a good family life?
Another aspect that families of persons with developmental disabilities have to deal with is the need to look to others for help. Since most of the families don't have the knowledge they need to deal with a developmental disability, they look to the medical and the social services communities to aid them. It is within this context that I will examine why and how such services have developed in North America to the point where they are today.
Just as persons with developmental disabilities perplex their families, so they are also creating dilemmas for the wider culture. Our culture views persons who will never be able to assume adult social economic roles from a deficit perspective instead of an asset perspective. This is the fundamental belief that drives services for persons with developmental disabilities.
Formal care for person with mental retardation in the United States started in 1848, when the first state institution was opened for children who were mentally retarded. This started a trend that saw the establishment of institutions throughout the country. The premise behind this was that such individuals could be rehabilitated and then returned to the community as productive citizens. These developments were occurring in the context of a philosophical worldview known as "modernity." This is a perspective which believed there are no limits to progress for humankind. (Nash, 1987)
However, by the early 1900’s, this optimistic view gave way to a pessimistic one. For people functioning at the lower to moderate levels, this outlook resulted in the function of these institutions being transitioned from being rehabilitative. This was done to persons on these levels due to the fact that they did not respond well to educational programs. It was also believed that persons with mental retardation were responsible for high rates of criminality, immorality and poverty. This belief led to development of the eugenics movement, in order to prevent the destruction of nation’s gene pool (MacMillan, 1982). This belief also caused moving institutions to rural areas. These places were designed to be self contained although it did not work this way. The function of institutions changed from one of trying to educate these persons to one of using these places to protect society from people who are mentally retarded, similar to a prison. This phase of thinking reached its high point between the years of 1912-1917.
From 1917 on, different developments emerged to show that the ways people with mental retardation were being cared for was based on unfounded facts. Research started to emerge that people with these disabilities were, in fact, able to live in typical social communities. It was found that assumptions between mental retardation and anti-social behavior were based on faulty research. (Gardener and Chapman, 1993)
A transition started to occur in the years of 1930-1950 as parent groups then started to organize to advocate on behalf of their children with mental retardation. These parents became increasingly concerned after World War II because more and more children with severe mental retardation were being admitted to institutions. Before World War II most admissions were adolescents with mild retardation. In 1950 the National Association for the Retarded was formed and this organization played a key role in the movement that came to be known as deinstitutionalization; in other words, taking persons who are living in institutions and place them primarily in homes in the community. One of the primary reasons for this movement was the dehumanizing living conditions in the institutions.
There were three other areas that parents organized around as it related to their children: 1) education, 2) adult services, and 3)residential services. Parents put pressure on local school boards and state governments to provide educational services for their children who functioned at the moderate and/or below level. Adult services consisted of two types of programs: 1)sheltered workshops. These are places where they basically do piece work and 2) work activity centers for low functioning individuals to work in a workshop setting. Different living arrangements were started based on type of needs and level of disability. The first being "independent living." These arrangements are broadly defined. Persons living in these places are high functioning. Other arrangements offering a greater level of support provide room and meals only. Group homes provide supervision for people who are lower functioning. The third type of residential setting is called an intermediate care facility for mentally retarded and developmentally disabled persons with medical needs. (Summers, 1986)
The 1970’s were a time of great change for persons as the deinstitutionalization movement was picking up momentum. Parallel to this movement research was being done at university levels that demonstrated that people with mental retardation could learn to do things previously thought too difficult. Through the use of behavior modification persons with moderate or severe retardation were being taught to do complex assemblies. This same technology was being used to teach skills like toileting, eating and personal hygiene among others. (DuRand and Newfeldt, 1980)
Another significant development occurred and this was an ideological response to people. It was called the principle of normalization. Dr. Wolf Wolfensberger is architect behind the principle of normalization. Previously the focus was providing needed services in the community. (Heal 1988, Wolfensberger, 1980, and 1992) The focus of normalization is on providing services in the most culturally valued way possible, while getting these persons to behave in ways that are highly esteemed by the general culture. According to Dr. Wolfensberger, it is not enough to ask people without disabilities to accept persons with mental retardation; for true acceptance to occur the person without the disability must experience the encounter in a positive way. (Wolfensberger, 1983) This philosophy of Dr. Wolfensberger, though in its infancy rejected, within a short time found acceptance within the professional community. From the 1970’s many others in the field of mental retardation started to think this way. A big part of this ideology was to treat persons with mental retardation according to their chronological age rather than their mental age. This segmented the professional community into two camps: those in the value camp and those in the research camp.
For those in the values segment community, the goal of working with a person’s mental retardation is to see these people become socially integrated into the society. Dr. Thomas Haring, who represents the Association for Persons with Severe Handicaps, says “social integration is defined as the full participation in social interactions within natural environments to the ultimate extent that the people encounter within that environment and as such is a part of a stable network. (Haring, 1991) Dr. John Dattio (1991), who represents the APSH organization, said, “It is extremely important for individuals with severe disabilities to develop age appropriate, community based leisure skill repertories to facilitate successful integration into the community”.
Persons who are in the research camp are anchored in the empirical tradition and are dependent on standardized tests as tools for client assessment of persons with mental retardation. This approach is also based on pre-supposition and is known as the medical model, which views mental retardation as an objective entry. (Ziger, et al. 1990)
Now, to examine the research methodologies of each camp: those in the values' side use both quantitative and qualitative methods. For those in this camp, mental retardation is a social problem and it holds people back from having a quality life because those that work with them expect so much more from them than what they can give. (Gardner and Chapman, 1991) These persons have used the political process to help secure what they perceive to be justice for persons with mental retardation. In the mid 1980’s legislation was passed and introduced what is known as “supported employment”. This is defined as a “…pair work in a variety of settings, particularly regular work sites, especially designed for handicapped individuals, 1) for whom competitive employment at or above the minimum wage is unlikely; 2) who, because of their disability, need ongoing support to perform in a work setting”. (Federal Register September 25, 1984) They have also sought to change the whereabouts of where children and youth with mental retardation are educated and where these persons live. These persons have introduced what they call full inclusion in the area of education, and supported living for adults. Starting in the late 1980’s student with all types of disabilities started to receive education in the regular classroom. This means proving students with the extra services they need in the regular classroom. (Giangreo, Putnam, 1991) Many parents and professionals view this inclusion of children with all types of disabilities as a civil rights issue. (Kauffman and Hallan, 1995) In this realm were adults with mental retardation. The concept of supported living introduced by definition means having these persons living in their homes while providing them with the support they need to do so. Federal money has been provided for this kind of situation for persons with mental retardation since 1990. (Racino, 1993) In all three of these models the key concept is that support is provided to these people to help them do what they cannot do on their own.
Those in the values camp reject the concept of mental ages that I have previously outlined. Instead of viewing people according to "normal developmental stages" perspective; they favor teaching these people by using "behavior modification." They rely on quantified research methods to justify their ideal outlook for persons with mental retardation; this means that their research is interpretative. Persons in this camp view the scientific community as putting roadblocks in the way of having people with mental retardation live integrated lives. (Taylor and Bogdan, 1994)
Others, who operate in the scientific camp, tend to be conservative in their outlook about how much people with these "problems" tend to agree with the concept of mental ages, as I have outlined above. The people in this camp are much more open to the need for specialized services for mental retardation. These people tend to rely on quantitative research methods to substantiate their claims. The reason they reject much of ideology of the values camp is that it lacks a sound research basis. The persons in the values community look at things through the lens of those without disabilities, and then try to have people live life through that grid. From their perspective they are empowering these people to be able to make choices that will give them social acceptance in the mainstream. In contrast those in the science community lean toward viewing life through the eyes of persons with mental retardation. They would see their condition more as a cognitive difference rather than a disability.
As a person who has watched the values community over the past number of years while working and befriending persons with mental retardation, I have made the following observations: The community say they are giving them ????? However, they will not support them when they are not able to operate and function at "normal societal levels" ???? For lack of a better analogy, this is like comparing how a luxury vehicle drives to an economy car, both are valuable in their own way. One is not good and the other bad. They both have their place for different reasons. In the same way, it would be unfair to consider all persons working in the field of mental retardation as subscribing to current integrated ideology. On the other hand, the promoters of this ideology have one goal, and that is to see their vision for persons with mental retardation to be the socially accepted norm (without leaving room for other perspectives or a more ballanced approach.)
Work is a gift of God’s common grace, and because all people are made in His image, we derive satisfaction from this. See Ecclesiastes 1:31. As Chuck Colson and Jack Eckerd (1991) point out, we have an innate need to engage in meaningful work. Since the 1960’s there has been significant research from state university-affiliated programs; the programs provide research about best practices in developing community living settings for persons with mental retardation. Research that was done until the late 1970’s about working with these people was done in the context of modernity paradigm. However, in the early 1980’s research started to be derived from a postmodern/qualitative paradigm.
The people who work with persons with mental retardation are caught in between a rock and a hard place because what they are able to accomplish with them is not that impressive when measured through the lens of empiricism. Just because this is true does not mean this God-given need will go away; rather it leaves a void that longs to be filled. One of the themes in the writings of Dr. Francis Schaeffer was that people need meaning in their lives so much so that they will have an optimistic outlook on life even when there is no rational basis for holding to such a view. (Schaeffer, 1982)
In the mid 1970’s the education of persons from moderate through the profound levels of mental retardation was still being questioned by both those in regular education and special education. At this time each of these sectors doubted that disabled persons could profit from education. It was within that cultural context that those in the values camp started to formally organize in the mid 1970’s. By their own admission the reason the values community held the ideology is they wanted to see what they considered to be more meaningful outcomes for people with mental retardation (i.e. social integration).
Our culture as a whole at this time was undergoing a transition toward an ethic of self-fulfillment, thus people wanted to change things that were not pleasurable to them. It is worth noting that persons who were formulating the values perspective on this issue were from a higher educational background; the reason this is important is because this ethic of self fulfillment started at the university level and filtered its way into the common populace. (Wells, 1993)
In the mid 1970’s the term “developmental disabilities” started to be used in the way outlined above as legislation passed at the federal level. During the first part of the 1970’s two very significant pieces of legislation were passed, the first was the Rehabilitation Act of 1973. This law made it illegal for any public entity receiving public money to discriminate in any way on the basis of disability.
The next significant piece of legislation was the Education for all Handicapped Children Act of 1975. This act guaranteed that all children receive a free and appropriate education in the least restrictive environment. What the meant is that people with all kinds of disabilities, whenever possible, should be in a regular classroom. At that time mainstreaming was being practiced based on the student’s ability to perform in a regular classroom. Students who were not able to perform were provided with education in a separate self contained classroom on a public school campus.
During the late 1960’s and into the 1970’s there was also the civil rights movements among those that were physically disabled who wanted to get into the cultural mainstream. This is what is known as the “independent-living movement”. These persons wanted to take control of their own lives; the basic philosophy is that these persons could and should manage their own lives. These people rejected the concept of seeing themselves as “sick” people, but instead perceived themselves as human beings who, when given assistance could be a part of mainstream society. For these persons, independence is not defined by what people can do for them, but rather how much control they can have over how they chose to live their lives. These same people started their fight for civil rights on the same level as other minority groups who were also advocating for civil rights. (Shapiro, 1994)
These pieces of legislation, along with the independent living movement, paved the way for those in the values camp to start to lump all disability issues together. In the early 1980’s the mix of factors came together politically: we had a very conservative administration and the ideology of those persons from the values camp fit together in a strong way. This administration’s emphasis on less government was a hand-in-glove fit with the emphasis of the values camp. Both of these social sectors were able to feed off of each other – those in the value’s camp could point to the fact that having persons with mental retardation and other developmental disabilities work at real jobs and attend regular schools helped get more out of our tax dollars. Meanwhile politicians could state that by having persons with mental retardation in regular schools and real jobs they were increasing the self sufficiency of this culture.
This group points out that the limitations of a person’s mental retardation is a reason why they cannot participate in certain aspects of the mainstream life, which they claim is oppressing them. Since people in the values camp use qualitative methodology to justify their position, this means that much of their augments for social integration of people are based on their subjective view of reality. And their view of reality says one’s quality of life is determined by how well one is plugged into the social mainstream. This is a very interesting point, in my opinion.
The generation of persons who are in positions of leadership at the university level, special educators, psychologists, social workers and other fields related to mental retardation are typically baby boomers. Research on this particular group shows that these people like life to be practical, and they turn away from things that they don't view as useful. (Barna, 1990, Murren, 1990) It seems to me that the mind set of this generation in combination with emphasis on self-fulfillment is fueling this focus on self integration. Both of these mind sets are like a single coin which has two sides. The way that this plays out is that because the limitations inherent with mental retardation often preclude these persons from achieving normal developmental milestones, this makes their work with these people often impartial . As a society we have turned to the public university to help us deal with our social needs and problems. The aim of this is based on an assumption that we can find practical solutions to the dilemmas that confront us as a society through the universities. Although this is their intended function, this simply is not the case. There is no such thing as objective truth at the university level. Given this cultural reality, what gets past as a solution is whatever seems to works at the time (i.e. pragmatism).
I will now examine how the ideology of the values camp is impacting families of persons with mental retardation. Having a child who is mentally retarded may mean the death of some common parental dreams for that child; it means having to readjust one’s expectations for that child. Both parents and professionals agree that this is a source of grieving for parents, and for some parents it never stops having an effect because they have not internally accepted it. (Hawley, 1981) Based on my research, parents generally have two different modes of response to having a child who is mentally retarded: one is what I call “reality based thinking” and the other is what I call “misplaced opposite”. Parents who have a realistic view are the parents who, as a general rule, go through the same stages of grieving as do persons who experience the death of a loved one. To their credit, persons in the values camp are right to point out that grieving is often treated as a pathological response and therefore, something to get over. The ability to grieve is a gift from God. Jesus modeled this for us in his response to the death of Lazarus; this is a very profound verse, for it tells what our response to tragedy should be, therefore, that grieving is to be viewed as pathological.
Parents of persons with mental retardation and other developmental disabilities who embrace the “ideology values” want to downplay the grieving aspect of having a child with these kind of disabilities (Strully, 1994) One of the reasons for the difference in reactions may be that many parents and professionals have gone on to be trained in the university level in different disciplines related to mental retardation. Modernity has been the prevailing worldview on the university campus. That outlook taught us that we do not have to accept limitations and we can find ways to overcome our problems: no longer are “problems, as such, but they are called “challenges” to be overcome. Some of these parents are in positions of leadership with local agencies that serve people with mental retardation and other developmental disabilities. As a result, these agencies are under pressure to change meaning, to embrace the ideology of the values camp.
Another major difference between these two groups of parents is that those who hold to a reality based perspective tend to accept the limitations of their children. On the other hand, parents in the values camp want to continually push the boundries of what their children accomplish. As people who bear God’s image, we are designed to respond to tragedy in a way that admits the pain. I believe response to tradgedy is one aspect that is included when scripture teaches about doing things by nature in Romans 2:14. In the life of Jesus we read how he showed emotions in different contexts and some of these were in the face of tragedy. I believe it fair to say persons who are in the values camp are denying a part of their humanity.
Often parents who hold a reality-based view of their children are seen as putting up roadblocks to their progress because they do not have high expectations for them. Another aspect of what it means to be made in the image of God has to do with how we respond to those who are weak; I believe it is fair to say because we are partakers of general revelation, parents in general have a tendency to view their adult children in a protective manner. Not all, but a good number of people who are not Christians still have within them a sense of protecting and looking out for those who are weak: this is a product of God’s common grace. I also believe it is fair to say that the reason so many parents in the reality based camp reject much of values camp ideology is that it violates what is best for their children. In Romans 1:18 we find that people suppress the truth in uprightness; it seems to me these persons in the values camp are doing so because they are unwilling to accept the limitations that are part of the condition known as mental retardation. The reason these parents have been brought into this line of thinking is that as a society we have been drifting away from any sense of transcendent moral order; instead truth is found in one’s personal experience. As noted before, some parents have sought a higher education from many different sources and concur that there is no such thing as truth at this level of our society, but only that which we perceive as true for us. In 1976 Francis Schaeffer said that we as a culture have bought into the impoverished values of a person’s space and audience. I think this portrays the outlook of these parents. (Schaeffer, 1981) This group of parents have been greatly broken by having a child who is mental retarded; however they often refuse to accept what has been given to them by the hand of God. Because many of the advocates of this ideology have gone through secular universities, where for the most part, there is no such thing as objective truth, but rather truth is seen as a matter of personal preference. This has opened the way for people to start experimenting with ways to provide services for persons with mental retardation. Another reason for this type of thinking is that we as a society do not view persons as uniquely created by God, but rather we view them simply from a materialistic perspective.
Now I want to look at how mental retardation relates to being made in the image of God. This is important because all that we do is related to the use of our intellect and almost all that we express is a facet of our being created in the image of God. One could say that all uses of our intellectual, emotional and aesthetic functions are an expression of the image of God.
From a Biblical perspective, mental retardation is considered a sickness, because it hinders the degree to which one can participate in the cultural mandate. On the other hand, all persons participate in the curator mandate to one degree or another. We can counter this for the following reason: 1) Acts 10:34 God is no respecter of persons. 2) ?????????? 3) every life is a wanted life, see Acts 17:26. People in the church today tend to take extreme positions concerning the subject of divine healing. On one side (the side where those say without exception it is always God’s will to heal at all times); and then those who claim God does not work that way today. (According to Ken Blue and Wayne Grudem, we only have to look at how Jesus responded toward sickness to understand God’s perspective toward sickness: he hates it because it is part of the fall. We are confronted, however, with a dualism in scripture because it states that although God hates sin and all its results, he permits evil to be a part of our experience in this world. In the books of Amos 3:6, Isaiah 45:7, and Psalms 115:3 we find that God uses evil to serve his own purposes. So when confronted with affliction such as mental retardation we should ask in faith for healing, but if it does not happen we need to know that he will work through the affliction to bring glory unto himself. When we see this happening we are seeing the cornerstone principle which is that He uses the very affliction itself to defeat sin and Satan. This is what happened through the cross. It was meant by Satan to destroy Jesus, however, it is through the cross that victory was won. The cross became the foundation for our salvation. Colossians 1:16 tells us that Jesus holds all things together and that they exists because he has permitted them to exist. This would include the different stages of development that persons with mental retardation reach.
One of the major ways we learn about the world is through creation. Through the study of the world about us we draw conclusions because we are free under the Lordship of Jesus. The scope of our inquiry covers every facet of exploration that humans are capable of. Because this is true, this would also include our inquiries about the nature and ramifications of what we call “mental retardation” . There are those in the values community who consider mental retardation to be a social construction. In contrast to the advocates of this view I argue that there is something objectively known as “mental retardation”. (Biklen and Duchan, 1994) The reason we are able to make this distinction is that there are persons whose intellectual abilities are very limited and this condition hinders the degree to which they can participate in different aspects of the cultural mandate. Notice I said “limited”, not unable to participate in the cultural mandate. I believe because God is no respecter of persons we are starting to participate in the cultural mandate from the moment we are born. We tend to think of children as getting ready for adulthood; however, because God is no respecter of persons, this means that each stage of human development is of equal value to him. This also means that children and/or persons with mental retardation are able to be players in the cultural mandate no matter where they are developmentally. We are to view every developmental stage as a treasure in and of itself and not simply as a means to an end… (i.e. as opposed to treating the "normal" stage as the only treasure)
I will now examine the concept of empowerment as it relates to persons with mental retardation from a Biblical perspective. First of all, there are degrees of empowerment. Scripture talks about this in Genesis when God says “for this reason a man should leave his father and mother”: I understand that it is talking about marriage, it is also implied in this statement is that a person starts to leave home long before the person actually does. As the person moves through the normal progression of developmental states, they become less dependent on others for meeting their needs and are able to assume more complex personal and social roles. As they take on these different roles, they are becoming more empowered in the sense that they are gaining more control of their lives. This is what I call proportional empowerment, as the degree of ability grows the level of control is expanded. Jesus talks about this kind of empowerment in Matthew 25:15, when he talks about giving talents according to the ability of the servants. Because there are many different levels of mental retardation, these persons obtain different levels of empowerment according to their abilities. This scripture shows us that God is a God of reason, and reason dictates. He does not ask more of us than what we are capable of. Also, there are many other cases that speak of the importance of reason, (see Isaiah 1:18, Romans 12:2, James 3:17-18.) Although these passages do not specifically mention reason, the thought is definitely implied: our ability to reason is fundamental to what it means to be made in the image of God. The ability to reason is also a product of our human development. So that although our reasoning ability is very important, what makes us human is that God gave all persons the breath of life (Acts 17:26). However, to the degree that we are able to develop intellectually, we are able to take on different social responsibilities.
From a Christian perspective the topic of empowerment needs to be examined within the context of one’s ability to assume responsibility. Carl Henry points out that human rights cannot be separated from human responsibility. He points out that human rights and human responsibility are like two sides of the same coin (Henry, 1988). As we have seen, there is something that we can rightfully call mental retardation (meaning limited intellectual ability.) From a Biblical perspective it is right for parents of a child to restrict their child’s participation in activities they know the child does not have the ability to succeed in (or even be safe in.) Making informed decisions regarding their involvement in certain activities may be well beyond that child's ability discern. Within the context of the Bible, regarding human rights, parents have to do this for two reasons: one is simply to ensure social order, and the other is for moral reasons. If parents did not restrict children in this way we would have social chaos, and on a moral level this is a violation of general revelation. The advocates of the values camp talk about giving persons with mental retardation choices, yet deny the fact of how these persons perceive the world because of their limited abilities.
The methods these persons use are quite questionable from a Christian perspective. These persons rely very strongly on “behaviorism” for teaching persons with mental retardation. Many Christian thinkers have pointed out serious problems with this worldview. (Geisler, 1983; Jones & Butman, 1991; Noebel, 1991; Schaeffer, 1981) There is a delicate balance that needs to be maintained here. We have to use some of this philosophy with very young children. An example of the right use of this teaching method would be a child that learns by route to go to the next door, or a person who functions at a 2-3 year old level as an adult and has to learn to put their dirty clothes in the hamper. However, there is a great difference between teaching someone how to perform a task and the denying fact that how we perceive the world is in a large measure based upon our intellectual development. The topic of choice is also related to one’s level of intellectual development. Also, the understanding of choice is directly related to our being made in the image of God. When we make choices this is an expression of the image of God. We see this very clearly when God told Adam to give names to the animals. He was telling Adam to exercise his power of choice.
From a Biblical perspective, the understanding of choice is also proportional to one’s ability to understand. Just as we saw, parents must restrict the activities when their child has a lack of ability to understand those activities. So, we must restrict activities of a person with mental retardation when they do not understand the activity or are unable to process its ramifications to themselves and others. It is quite common to hear persons that work in the field say things like, “label jars, not people”, however the ability to classify and discriminate is a God given ability. These are vital skills to provide a stable social order. We see in the creation account that he divided the night from the day. In the New Testament Paul uses discriminating terms. There he talks about stronger and weaker (i.e. we need each other, but he acknowledges the differences between the weak and the strong. (see 1 Corinthians 12:12-26)
In the parable of the Good Samaritan we see that those persons had to have skills to determine what course of action needed in that situation. First, the Samaritan had to access the situation to determine what needed to be done. This meant doing some things as opposed to choosing to do others. This ability to discriminate in a healthy manner is part of what it means to be made in the image of God. We have already seen that from a Biblical viewpoint mental retardation would be considered a sickness. We have also seen that parents have to restrict the activities of their children when they are too young to understand the consequences of their actions.
So, we understand that from both a moral perspective and from a pragmatic viewpoint, it is necessary to restrict the rights of persons with mental retardation. For, to not do so would be a violation of general revelation and would lead to social chaos. From a Biblical perspective, we need to help persons with mental retardation in accordance with their abilities. We need to help them become empowered according to their level of understanding. Persons holding to the values position, no matter how well intentioned they may be, are pushing an ideology that isn't based on fact. Scripture clearly teaches that every good and perfect gift is given to us by our Heavenly Father (this includes the study of human development.)
Through interactions with persons, we discover that there is a great variation in the abilities of persons with mental retardation. Therefore, the needs are very diverse. We are designed to respond to certain situations in particular ways. When we do not, we violate general revelation. For the most part, people respond to persons who for whatever reasons do not act as adults with a sense of care and protection, and so we are acting in accordance with the way we were designed to function. Persons in the value camp want to change the behavior of persons with mental retardation so that people without disabilities will want to interact with them. Their reasoning is that persons with mental retardation are being treated by others with distain because of their abherent (or different) behavior. These condescending attitudes are held up as the "norms" of our "society." The sole solution in this "unacceptable" situation is to drive those with disabilities to disguise their disabilities in order to placate the arrogant "norms" of society at large. They do not want those with mental retardation to be seen as weak and needy. Rather, while they admit that these persons have needs that others with don’t have, the important thing in their mind is the socially valued roles that these people can attain. It is unreasonable to ask and/or think that people should respond to mental retardation in this fasion. The reason for this is that as we’ve seen from a Biblical perspective mental retardation is considered a sickness. Because we are created in God’s image, we were designed to respond to the “abnormal” with empathy, sorrow and compassion. We see when Jesus was at Lazarus’ tomb, he wept. The reason he did this was because it was His response to that which was abnormal. In their effort to view mental retardation through rose colored glasses, those in the values camp are asking people to deny their God given response to tragedy.
Children are gifts from God. They are meant to be a blessing to their families and others. Core scriptural truth applies to all children no matter how disabled they may be. Considering how perplexing it is for parents to have a child with mental retardation, one can see why parents would want to hold to the view that the values camp embraces. However, as Christians, we need to help these children develop according to their God given potential and also accept the limitations that are part of mental retardation. The reason the church needs to concern itself with this topic is threefold: 1) the family, 2) care of the weak, and 3) dissemination of correct knowledge.
It is often in times like these that a family will turn to the church for direction. The church needs to be a knowledgeable resource to them and/or know where to point these families for further help. The fundamental need is to help each parent see that child from a Biblical paradigm (no matter how old or disabled the child is.) God told Abraham I have blessed you so that you will be a blessing to others. This truth applies to parents with a child who is afflicted with mental retardation. These parents need to know that the way their child ends up being a blessing to others will probably be different than they had previously expected. However, the fact that their child will be a blessing to others is without a doubt!
We are living in a society that doesn't want to discriminate against anyone in any way. However, as we have seen, it is an aspect of expressing God’s image to make intellegent discriminations. Although I believe strongly that all people are created equal, we are not equal in our abilities. It is right for us to draw conclusions based upon our empirical observations that follow from persons being mentally retarded. To the degree that we understand mental retardation, we can help them be all God intends for them to be. Persons in the values camp are going against general revelation. For to simply interact with persons who are mentally retarded is to know that these persons have limitations. At the very highest level, they may function at about that of a 12-13 year old child. We would be hard pressed (even at this level) the abilty to assume the total responsibilities of adult roles. Yet this is the kind of unrealistic burden that often gets placed upon persons with mental retardation.
There is a need for the people of God to struggle with these issues and speak up for those who the Bible has no problem calling “weak”. If people are not willing to speak truth concerning the treatment and care of persons with mental retardation, this creates a vacuum that is filled with the values camp ideology. To let these people be treated in a way that does not reflect God’s best for them, is not what the Bible has in mind.
References
Barna, George, (1990) The Frog in the Kettle: What Christians Need to Know About Life in the Year 2000. Ventura: Regal Books.
Biklen, D. & Duchan, J.F. (1994) I Am Intelligent. The Social Construction of Mental Retardation. The Journal of the Association for Persons with Severe Handicaps. 19, 173-184
Colson, C., & Eckerd, J (1991) Why America Doesn’t Work. Dallas: Word Publishing.
Dattilo, J. (1991) Recreation and Leisure: A Review of the Literature and Recommendations for Directions. In L. H. Myer, C. A. Peck & Lou Brown, (Eds.) Critical Issues in the Care of Persons with Severe Disabilities. Baltimore: Paul Brooks Company 171-194
Dick Marion, (1988) Families of Handicap Children. Elgin: David C. Cook Publishing.
Gardner, James F., & Chapman, Michael S. Developing Staff Competencies for Supporting People with Developmental Disabilities: An Orientation Handbook, Second Edition. Baltimore: Paul H. Brooks Company.
Geisler, Norman L. (1983) Is Man the Measure: An Evaluation of Contemporary Humanism. Grand Rapids, Baker Books.
Grossman, Herman J. (1983) Classification in Mental Retardation. Washington, DC: American Association on Mental Deficiency.
Grudem, Wayne A. Systematic Theology: An Introduction to Biblical Doctrine, Grand Rapids: Zondervan.
Haring, Thomas G. (1991) Social Relationships. In L. H. Myer, C A. Peck & L. Brown (Eds.) Critical Issues in the Lives of Persons with Severe Disabilities, Baltimore: Paul H. Brooks Company.
Hawley, Gloria (1981) Families and Friends of the Handicapped. Joni and Friends, Joy in Caring Seminar.
Henry, Carl, F.H. (1988) Twilight of a Great Civilization. Westchester: Crossway Books.
Jones, Stanton L., & Butman, Richard E. (1991) Modern Psychotherapies. Downers Grove: InterVarsity Press.
Murren, Doug. (1990) The Baby Boomerang: Catching Baby Boomers as They Return to Church. Ventura: Regal Books.
Nash, Ronald H. (1987) Evangelicals in America: Who They Are and What They Believe. Nashville: Abingdon.
Nobel, David A. (1991) Understanding the Times. Manitou Springs.
Pomerantz, David J. & Martholin, David, II (1980) Vocational Habilitation, a Time for Change. In R. J. Flynn & k.E. Nitsch (Eds), Normalization Social Integration and Community Sevices. Austin: Pro-ed, pp. 259-282.
Racino, Julie A. (1993) Opening the Doors: The State Role in Housing and Support. In J. A. Racino, P. Walker, S. O. Connor and S. J. Taylor, Housing Support and Community: Choices and Strategies for Adults with Disabilities. Baltimore: Paul H. Brooks.
Schaeffer, Francis (1987) The Complete Works of Francis Schaeffer: A Christian Worldview. Westchester Crossway Books.
Shapiro, Joseph P. (1994) No Pity: People with Disabilities Forging a New Civil Rights Movement, New York.
Strully, Jeffrey, (1994) Video presentation given in Fresno, California.
Taylor, Steven J. & Bogdan (1994) Qualative Research Methods and Community Living. In Mary F. Hayden & Brian H. Avery (Eds.) Challenges for a Services System in Transistion: Ensuring Quality Community Experiences for Persons with Developmental Disabilities. Baltimore: Paul H. Brooks.
Wheeler, Bonnie (1983) Challenged parenting: A Practical Handbook for Parents of Children with Handicaps. Venture: Regal Books.
Wells, David F. (1993) No place for Truth: Or Whatever Happened to Evangelical Theology. Grand Rapids: William B. Eerdmans.
Wolfensberger, Wolf (1980) The Definition of Normalization Update, Problems, Disagreements and Misunderstandings. In R. J. Flynn and K. E. Nitch (Eds.) Normalization and Social Integration and Community Services, pp.71-116.
Wolfensberger, Wolf (1992) A Brief Introduction to Socaial Role Valorization: As a Higher Order Concept for Structuring Human Services. 2nd revised. Syracuse, N.Y.: Training Instittue for Human Services, Planning, Leadership and Change Agency.
Ziger, E. Hodapp, R.M. & Edison, M. R. (1990) From Theory to Practice in the Care and Education of Mentally Retarded Individuals. American Journal of Mental Retardation, 95, 1-12.
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