Metaphor as metaphor vs. metaphor as reality

The Bible is filled with various metaphors useful in illustrating a point for Christians. Everything from the notion of God as our Father, to us as sheep, are actually metaphor for the purposes of instruction or the assistance with understanding. God is our Father as most of us have had fathers, most of them have been loving, and we can relate to the notion of Father. Apparently God wants to relate to us as a father to his children as well, or he would have chosen some other metaphor to teach us about who he is and how he wants us to relate to him.

There are other metaphors in the Bible, which when taken out of context can result in people being misunderstood and potentially ostracised. For example, the Bible will at times talk about people as being spiritually blind. It is a great metaphor as all one who is sighted needs to do is close her eyes to recognize that she would feel at a great disadvantage. The idea is, that spiritual blindness is similar to physical blindness in its effect on being able to find one's way. However, physical blindness is not spiritual blindness. A person who is physically blind is not necessarily spiritually blind. To equate the two would be a great disservice to the person who is a physically blind Christian.

At other points, people are given a disability by God for greater or lesser periods of time. Paul is blinded on the road to Damascus. Zechariah is unable to speak because of a lack of faith, Nebuchanezzar loses his mind because of his pride and vanity. However, not all who are blind are blind to catch their attention because they are persecuting the church. Not all who cannot speak are that way because of a lack of faith. Not all who deal with various forms of mental illness are that way because they were full of themselves. In fact in the overwhelming number of cases, blindness, speech or mental illness have nothing to do with an individuals behavior at all.

Unfortunately, the exceptions have resulted in Christian social constructions which make them more of the rule. As with the disciples we asked "who sinned?" when we see a person with disability. We ask, "What is God trying to teach you?" when we see a blind person, or think of the destructive lifestyle one must have lived to experience mental illness. We overgeneralize the experiences of a few people in history.

Whether it be the misapplication of a metaphor or the overgeneralization of experiences of people shared in the Bible, we must be careful in our application to people with disability. Metaphor is useful when it is taken as metaphor. The life experience of another is useful when taken within the full picture of the other person's life.

McNair
(fcbu)

Life changing interviews

This past Wednesday evening, I brought four of my friends, adults with developmental disabilities, to my class on exceptional children. My friends, Amy, Joyce, Mark and Larry, were interviewed by me and then later by the students themselves. We all had a great time laughing and learning.

It always amazes me, however, how such interactions can dramatically change people in terms of the way they think. Most or all of their lives, they have lived with the societal construction of what disability is and who people with disabilities are. They have lived with notions that they are sad, that they are discouraged about their lives, they look on people without disability thinking how unfortunate they are. However, when one meets a person with a developmental disability in particular, they learn that they are happy, they enjoy their lives, and they hardly give people without disability a second thought. I find that they largely don't even discriminate between people with or without disability in terms of friendship. Obviously my friends with disability recognize that I have a car, for example, and most of their other friends don't, but that perspective is much the same as I would have of a friend who happens to be wealthy in comparison to me. I think how it would be nice to have some of the same things she/he has, but beyond that I really don't give it much thought.

One friend of mine, has talked about how he wishes his apartment wasn't as expensive as it is, but that is mostly about having more expendable income to do other things he wishes he could do. We all feel that way at times.

As we debriefed at the end of the class session, I struck me that the friends I had brought to meet with my students had made such an effect them. I remarked to my students at the end of the class, that people like those they had met are the ones that the church is not going out of its way in bring into the church and are not being served in Christian schools. I encouraged them when they went to church this week to look around at their church to see if they saw any people like those they met at their church. If they didn't, then why not? They are definitely there in the community and would greatly benefit from church involvement.

McNair
(fcbu)

Don't buy the platitudes

A student of mine recently passed on a web link to an article she had read. On the one hand, I think she wanted me to see the article as she thought it was good, and on the other hand, she wanted my perspective on the article. Written by a profesor at Brigham Young University, it makes many good points about critical factors in the raising of a child with a disability. However, near the end, it states,

"When Nikki received her patriarchal blessing, she was told she had been given this special experience in mortality because of the greatness of her soul. She helps others learn compassion and understanding. I am grateful for all the good she has done for our family as well as for many others. Nikki teaches us that love, kindness, and charity are not just for the swift or strong, but they are for those who struggle. I have the firm hope of an eternal relationship with Nikki. I know that when she is finally healed of ther disability, I will learn yet more from the greatness of her soul."(Williams, 2004, Intellectual Reserve, Inc.)

People with disability being given a special experience in disabilty due to the greatness of their soul. I suspect that the person making this claim did so with the goal of lauding her friend Nikki through her description, however, it actually does just the opposite. Nikki is not seen as a person, she is seen as the posessor of some special greatness of her soul. Who she is, is interpreted through the lense of her disability. So she isn't my friend, or a person I know, I first see her as a disabled person, and I then make a construction of who she is to make her more acceptable to me and to those around me.

Have you ever been on a committee where each person has a particular purpose for being on the committee? This same committee looks at you and tries to figure out why you are there. It is definitely an uncomfortable feeling. You feel like you have something to prove in order to be accepted.

We do that with people with disability. We obviously see our own worth in our own eyes (we all struggle with vanity). We then look on a person with disability and wonder what their purpose might be. We exalt ourselves by seeing ourselves through our vanity, and demean others by also seeing them through our vanity. I Corinthians 1 says, "He chose the lowly things of this world and the despised things - and the things that are not - to nulify the things that are, so that no one may boast before him." The reason we are accepted is not that we have a purpose, something that necessarily sets us apart. We are accepted because we are people, so that no one can boast. But because I obviously see that I am of great value to the Lord because I am athletic or witty or smart or attractive (I am boasting), I must also find a reason for the person with disability (In my prejudice I don't think they can boast because they aren't athletic, witty, smart or attractive, so I give them something so they can also be able to boast). I say that they have a particularly great soul. But deep down we don't believe it. Mostly we don't believe it because it isn't true from a scriptural basis, but also deep down we know that we are just trying to give the other value (which isn't necessarily a bad thing). The problem is that we demean others by not telling them the truth. As Wolfensberger has indicated, we develop role perceptions rather than treating people as normally as possible.

So don't buy the platitude given by anyone, if it doesn't reflect the truth of the scripture. Besides, how can I surpass the notion that God finds each of us infinitely valuable just because we are a creation of His, because we are.

McNair
(fcbu)

Deconstructing disability: Role perceptions/holy innocent

In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following role perceptions are from Wolfensberger.

7. The deviant as a holy innocent

The notion of persons with cognitive disability as being holy innocents is a perception which permiates Christianity. We hear of people being "God's special children" or "Angels unaware." No doubt those who use such characterizations are in some way trying to elevate the perspective of persons with disability, or encourage the parents or families of these persons, however, if they are God's special children. . .

• Why do we fear them?
• Why don't we want them in our own family?
• Why aren't Christian churches working feverishly to bring them into the fellowship?
• Why aren't Christian schools looking for every possible way to serve them?

You see, those who say they are God's special children, really don't believe they are. If they actually did, their behavior would change toward them. I don't agree that they are God's special children, but if I did actually think that I would base my perspective on scripture, and it would hopefully impact the way I live. It's like saying "We are all the same in the eyes of God." Well, if you believed that, you would be as interested in bringing persons with cognitive disabilities into your church as you would business professionals.

But there are other issues with the holy innocent perspective. The holy innocent is incapable of voluntarily committing evil or doing wrong. They are simply misunderstood. By saying such things, you remove their humanity in that the Bible is crystal clear that we have all sinned and have hearts that are "desperately evil." I do no favors when I act in a paternalistic manner when I see a child doing something wrong by saying that he can't help himself.

When a friend of my son's was young, he had an anger problem. When I confronted his parents about the problem, they replied that people just get angry in their family and that he can't help himself. My response was that he will help himself when he is at my house or he won't be welcome there anymore. Can you imagine an employer of a person with a disabilty who does something innappropriate in the work environment gathering customers together and saying, don't mind him, he is a holy innocent and really either can't help himself, or is basically unable to do something wrong. They would indicate their position on his perspective by no longer frequenting the store. By holding persons with disability to the same high standard for behavior as others, we challenge them to grow and our high expectations will spur them on to do better.

A friend of mine with cognitive disability called my home once when my son was younger. He had been trying to reach me, and as we all face at times trying to reach someone, was having trouble. He became frustrated and started swearing at my son over the phone. My son was old enough to take it in stride, and told me of the interaction. My response was to contact my friend and tell him that if he ever swore at my son again he would no longer be my friend. My friend was just a man, a man who had lost his temper and needed to be called on it. Since that time, he will still get frustrated with me at times, but he won't swear at anyone in my family because I applied the same standard to interactions with him that I would with anyone.

The holy innocent also has about it an infantilizing aspect. When preschool children do something wrong, although we correct them, we tend to smile inwardly. At times their misbehavior is almost cute. That same perspective is often applied to adults with developmental disabilities. But we do them no favors if we treat such behavior as cute. A general public which has little tolerance will not look on the behaviors as cute. In fact the behaviors might actually support the societal construction they have assimilated from the environment (using Tylers words see 10/1 blog).

Last evening in a class I am teaching at California Baptist University, a student commented to me that persons with disability, specifically cognitive disability have a "special relationship with the Lord." My first response was to tell her that so did she and so did I, however, I then went on to ask where in the Bible does it indicate that persons with disability have a special relationship with God? She mentioned several verses which have been cited in this blog which indicate that God is particularly interested in the "things that are not." But once again, when it was all boiled down, we ended with the position that somehow simply because a person has a disability, they become a holy innocent, a special child of God.

Even though those who use this phrase mean well, we have to get them to either, 1) stop using it, 2) justify it from scripture, or at the very least 3) get them to act as if they really believe it is true.

McNair

(fcbu)

Deconstructing disability: Role perceptions/eternal child

In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following role perceptions are from Wolfensberger.

6. The deviant as an eternal child
Unfortunately, much work in psychology has led to the perpetuation of this role perception. We have measures of intelligence translated into "mental age" apparently because such a measure will help professionals in programming. So we hear people say that Johnny has a mental age of 12 or the mental age of 11 months. Even people who are not professionals talk about a person as having the mind of a 6 year old.

We see people as never growing up. Therefore, we place them in childish enviornments with decorations unfitting for their age. At times we even see adults with disability housed with children, the obvious thinking being that they are functioning at the same age level.

As a reaction to this, beginning around the 1970's, professionals have developed the term "chronologically age appropriate" as a description of programs, interactions, environments, etc. for persons with disability. We want these aspects of their lives to reflect their chronological age, not their supposed mental age. There are a variety of reasons why we would want to do this.

Persons with disability simply by virtue of the fact that they have a disability are often stigmatized. Disability is not seen simply as a characteristic of these individuals, it is a negative characteristic which limits typical positive interactions which might be enjoyed between people. This of course depends upon the mindset of the person without disability, however, at the very least, stigmatizing factors may at least cause one to pause. They cause one to wonder, thinking that something is not quite right. These stigmatizing factors may be overt, or discovered through further interaction. In order to facilitate normalization in interactions, we do well to not add stigmatizing factors to people who may already be devalued by societal constructions.

Back in the early 80's (before I knew better) I once worked at a camp for adults with cognitive disabilities. The theme of the camp was "cowboys and indians." We rode horses, shot guns, made bows with arrows, indian jewelry and headresses, and barbecued. The problem with this was that the persons with disability who attended the camp were adults, some in their 50's with cognitive disability. They had a great time at the camp, but the following week, some were walking around Pasadena California with headresses on carrying a bow and arrow. Now they wouldn't be a danger to anyone (as hard as we tried, we weren't very good bow makers), however, what we did in holding a camp that was not age appropriate was to send them into the community with artifacts that they carried around which did little more than stigmatize them. Can you imagine walking down the street and seeing a fifty year old guy with a bow and arrow and a headress (made out of construction paper no less) walking toward you on the street in Pasadena? I suspect your response wouldn't be to think, "I gotta get me one of those head dresses" but rather "What is wrong with that person?" By engaging in activities which were not age appropriate, particularly those which produced artifacts that the people carried around for the next 3 weeks, we hurt their potential for positive interactions with the general public by stigmatizing them.

By contrast, there is a fellow who attends my church. Lets call him Chuck (not his real name). Now I have know Chuck for probably 10 years now. He is a good looking young man who dresses well. He regularly attends church with his mother, and I believe he works in some sort of sheltered setting. The point is, you would never pick this guy out of a crowd as being someone with a cognitive disability. So in every first interaction, he has the opportunity to sell himself to you (if he cares to) as the great person that he is. In discussion you would quickly learn that he has a disability, however, you would also learn that he is a great guy. Contrast that with the people I helped to stigmatize with the construction paper head dresses. Certainly your approach to them would be different. You would approach thinking these persons have cognitive disabilities.

But the typically reply is, "But they enjoy the juvenile activities." Well, there may be juvenile activities that I enjoy as well, but I am careful to whom I share that interest of mine, or at the least, I have competence in other areas to overcome the deviance of my preoccupation with some juvenile activity.

The poster child for the competency/deviancy hypothesis (I first heard described by Dr. Marc Gold) was Dennis Rodman, the outstanding NBA player. As long as Rodman got 17 rebounds a game, he could behave poorly and act crazy. He really was an outstanding rebounder and defender. But as he aged, his competence (rebounding) began to wane, while his "deviance" (acting crazy) remained the same. Ultimatley, he was unable to play any more in the NBA. It is arguable, however, if he had been a better "citizen" he might have lasted longer as there would have been less deviance to be overcome by competence.

Persons with disability, at times due to their disability and at times due to the societal construction of their disability, carry around "deviance" which must be compensated for with competence. Age inappropriateness on the part of the person with disability only adds to their perceived deviance, requiring more competence of some type to overcome it. If the captain of the football team starts carrying a Spongebob Squarepants back pack, it will be cool. However, if the person with cognitive disability who attends the same school tries to initiate the style, he will be devalued because of the lack of competence he has to counterbalance the deviance.

So by way of instruction, when you interact with a person with cognitive disability, independent of the severity of their condition, the way you interact, as much as possibile the content of your interactions, the enviornment for your interactions, etc. should be as age appropriate as is possible. Your language might be simple in style and content, however, it is not age inappropriate or demeaning, and reflects a respect for the person's age.

McNair
(fcbu)

Attitude development

In the classic book on curriculum theory, Basic Principles of Curriculum and Instruction (1949) Tyler discusses four chief means by which attitudes "commonly develop." He states the following.

"The most frequent method is through assimilation from the environment. The things that are taken for granted by the people round about us, the points of view that are commonly held by our friends and acquaintances are illustrations of environmental attitudes which are frequently assimilated without our having been conscious of them.
A second and perhaps the next most common method of acquiring attitudes arises from emotional effects of certain kinds of experiences. In general if one has had satisfying experiences in a particular connection, he develops an attitude favorable to some content or aspect of that experience while if he has had an unsatisfying effect from the experience, his attitude may become antagonistic.
The third most frequent method of developing attitudes is through traumatic experiences, that is, experiences which have had a deep emotional effect. Thus, a youngster may develop overnight a great fear of dogs from one experience in having been bitten by a dog.
Finally, a fourth method of developing attitudes is through direct intellectual processes. In some cases when we see the implication of a particular object or process, we are led to develop an attitude favorable or unfavorable to it from the knowledge which we gain from this intellectual analysis". . . Unfortunately, attitudes formed through definite intellectual processes are not so frequent as those obtained in other ways. Of these four methods of developing attitudes, the third is not likely to be useful to the school. Traumatic experiences involving the intense emotional reactions are too hard to control to be used systematically in an educational program. Hence, schools will have to lean heavily upon the use of a process of assimilation from the environment, of developing attitudes through emotional effects of particular experiences, and through direct intellectual processes" (p. 76).

Once again, attitudes develop through

• a process of assimilation from the environment
• emotional effects of particular experiences
• direct intellectual processes

In thinking about societal attitudes toward persons with disability as reflected in societal constructions, the attitudes developed in different people in different ways. Traumatic experiences must also be factored into the mix, although we cannot use them necessarily to develop attitudes. I would suspect that by and large, most attitudes are developed through assimilation from the environment. Among some informed groups, direct intellectual process has probably had some impact. Some people might have had emotional effects from experiences, but using myself as an example, experiences might cause negative effects, or might cause one to devote his life to these persons with disability (in their inclusion, education, etc.).

"Several generalizations may be suggested regarding learning experiences for developing attitudes. In the first place, the school and community environment should, so far as possible, be modified and controlled so as to promote desirable attitudes. In many modern communities there is disjunction between the school and the home, the school and the church, the school and the rest of the community with regard to the attitudes that are developed. The environments are inconsistent; values, points of view are taken for granted in the press that are denounced in the pulpit, the values emphasized in the motion pictures are in conflict with those which the school seeks to develop. There is a great need for seeking to modify the environment of the youngster throughout his experience in order to help him develop desirable social attitudes. This means increasing the degree of consistency of the environment and helping to reinforce the emphasis upon social rather than selfish attitudes" (p. 76-77).

As I think through the various environments from which attitudes might be generated, I am not sure which one I would choose as the model I would want to proliferate. School, community, home, church, press, pulpit, to some degree each of these attitudinal repositories beg for the modification and control Tyler alludes to. The church distrusts the public school which distrusts the community and so on. Teacher training becomes more rigorous because the community distrusts the school as it is the teachers' fault children aren't performing as they should. Schools point to homes. Once the appropriate attitude is found, the job is to try to align everyone to that attitude.

Sometimes that alignment can be orchestrated through law, at least aspects can. I can force integration with the hopes that when people are together, attitudes will change to reflect what they learn through the integration experience. Forced integration might be thought about in a variety of ways, but I am thinking about integrating persons with and without disability. As far as the church is concerned, I must rely on the good will of the people. If my church has too much of something different, I will simply go to another church which has more of the same that I am used to. People who are willing to take the risk of having their attitudes changed can often be the ones to lead the way in altering social constructions, however, that doesn't always work as they are typically marked as being different (meaning open minded) and not all open mindedness is good.

Even within families, the experiences you might think would soften attitudes toward or at least cause dissonance with the societal construction aren't always perceived that way. Rather than seeing the construction as unreflective of reality, they define the situation with the construction until they are beaten into submission by the dissonance between the construction and reality. A price was paid for the information gained from that experience. As long as the experience of disability is deselected or remote, the societal construction is employed unchallenged. The saddest thing, however, is when the construction is embraced by parents and significant others and fed to the person with disability. The negative self-perception the person with disability gains becomes the filter through which they define themselves, their social interactions, their ambitions, and the world.

McNair

Deconstructing disability: Role perceptions/object of ridicule

In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following role perceptions are from Wolfensberger.

5. The deviant as an object of ridicule
Elsewhere in this blog, we have discussed the film Freaks. This film used sideshow performers as the actors. It was taking these individuals who for whatever reason chose this means of livelihood and put them on the big screen. The reaction of the "normal" people attending the side show in the film provide the true indication of how these persons were portrayed. One woman screams and faints. Hardly the response one would have when visiting other parts of the circus.

The "freak show," however, was not something new even in the 1930's. Wolfensberger speaks of medieval society, or the court of Montezuma as being populated with persons with characteristics different from the norm, with these same individuals "housed after the manner of a modern park z00" (p 23).

I can remember when imbecile, moron and idiot, terms I had come to laugh at when uttered by Moe, Larry or Curly, took on a different meaning. They were actually the labels for persons with mental retardation at the time the Three Stooges films were made. Now I still love the Three Stooges, but I tend to cringe when one calls another an imbecile as I consider the use of the term in the time that those films were made. It would be like me saying, "You profoundly mentally retarded person" to someone I was upset with. Wolfensberger speaks of the "moron" jokes that were prevalent around the time of the writing of Normalization. Take your most offensive racial slur and come up with a series of jokes using that term, and you get a feel for the inappropriateness of that term to those experiencing cognitive disability.

I can remember a time when I read a newspaper article to the group of cognitively disabled friends I meet with each Sunday. We call our group the "Light and Power Company." Anyway, the article spoke of how someone referred to a member of our group (that was why I was reading the article, to help them through the offensive nature of the article) as a "retard." I was struck by how the person to whom the label was referring, said, "They shouldn't use that kind of language in the newspaper."

So chide someone if they say someone else is retarded, or is a retard. That word takes a group of wonderful people and stigmatizes them indirectly. It supports negative aspects of the social construction of who persons with disability are.

McNair
(fcbu)

Christian societal constructions of disability

Christian societal constructions of disability . . . what the heck could that mean? Well, it has to do with the way that the concept of disability has come to be understood within Christian environments.

What does it mean for a Christian family to have a child with a disability?
What do people think when they see this family with a disabled family member?
What have Christians come to understand is the reason a particular family has a family member with a disability?
What does it mean to a person to have a disabilty, whether they acquired it or were born with it?
Are there common perceptions which have been taught or at least sufficiently supported that they have become a part of the way Christians think about disabilty?
What is mental retardation, from a Christian perspective?
What societal constructions, that is, what commonly accepted notions accompany disability in Christian settings?
Why does a person have a disability?
Where did the disability come from?
What does disability imply about God?
Does God cause disability?
What does disability imply about people?
What is the responsibility of people in the etiology of disability?
What is the responsibility of people in the life of a person, either for a Christian or a non-Christian with a disability?
What does disability imply about the church?
What is the responsibility of the church in the life of a person, either for a Christian or a non-Christian with a disability?
Does the Bible have anything to say about disability?

The way these kinds questions would typically be answered by an average Christian would give an indication of what the Christian societal construction of disability is. the answers would indicate how Christians understand disabilty, and the degree to which a Christian perception might be similar or different from the perception of a non-Christian.

For example, in some societies, the societal construction of women is that they are below men. In some societies, the societal construction is that some ethnic groups are below others. People might give reasons for the societal constructions they have come to accept, overtly or otherwise. If I perceive persons of a different ethnicity as somehow less than myself, I provide a glimpse into my belief system, and depending upon the basis for my perceptions, I will be considered rational or irrational.

The Christian societal construction of disability provides a glimpse into the Christian belief system for those inside or outside of the faith, and the basis for Christian perceptions will also come under scrutiny to determine whether they are rational or not. I have experienced aspects of the Christian societal construction which leave me wanting and wondering. As a lifelong Christian, I see people with disability, people without disability and the Christian scriptures and want to find some consistency in it all. I want the practice of people to reflect the consistency of the scriptures, but somehow along the way, the Christian societal construction has strayed, almost into some form of fairytale fabrication. It has enough truth to feign believability, but little enough falacy that you could overlook it (if you didn't know any better) and begin the walk down a path leading to nonsense. Nonsense projected upon people with disability is what I often see in people, in churches, in Christians even. It is the Christian imagination gotten lost.

McNair

Wolfensberger on social integration

One of my favorite books on social integration, is "Normalization, social integration, and community sevices" edited by Robert Flynn and Kathleen Nitsch (1980). In an article by Wolfensberger (The definition of normalization: Update, problems, disagreements, and misunderstandings), he makes the following comments.

" . . . in the long run, no good can come of any program, including normalization, that is not based on intimate, positive one-to-one relationships between ordinary (unpaid) citizens and those who are handicapped and who would otherwise be devalued."

One on one contact is reminiscent of the idea of matching families in churches with persons with disability within churches in a life partner kind of arrangement.

"Indeed, there is little within the implication of the Wolfensberger definition of normalization that is not empirically supportable, and one would almost have to go to metaphysical systems for more broadly applicable concepts. One such system might be radical Christianity, which would subsume much of normalization, but which would also reject some(not many) of its implications."

Interesting that Wolfensberger suggests "radical Christianity." I am unsure what he means by the term radical, but I suspect the implication is something other than what is typically observed in churches.

In a second article in the same book (Research, empiricism, and the principle of normalization), Wolfensberger states
"Thus, when devalued people are served in valued settings, where familiar and valued methods are used, and together with other valued people (i.e., associated with positive images), their social desirability in the eyes of others (i.e., the potential assimilators) will be increased.
The findings also imply that the development of highly valued personal traits, such as courtesy, friendliness, generosity, hospitality, sociability, and attractive appearance, in devalued persons is extremely important in moving them toward acceptance by members of society and therefore toward the integration onto the community."

This is similar to Berger and Neuhaus' 1977 article, "To empower people: The role of mediating structures in public policy" who define the concept "mediating structures." Mediating structures being people who help a devalued group by introducing them to those who can help them, or by helping them themselves. This is the track the church should be on. By our involvement, our service, our work, we validate the lives of persons with disability and in some ways make it "cool" to serve them. The more we embrace this notion as the church the better for persons with disability and the church.

McNair
(fcbu)

Broaden your mind, Malcolm, broaden your mind!

I was reading C.S. Lewis', Letters to Malcolm, chiefly on prayer and was struck with something Lewis wrote. Although the comment was made in reference to liturgy/worship, I thought about it in terms of disability. Lewis says,

"Broaden your mind, Malcolm, broaden your mind! It takes all sorts to make a world; or a church. This may be even truer of a church. If grace perfects nature it must expand all our natures into the full richness of the diversity which God intended when He made them, and heaven will display far more variety than hell. "

Grace perfects nature. That is an interesting concept. More perfection needed, more grace dispensed. God shows grace to all people, sometimes I think me above all. God shows grace to perfect our nature. The church is God's agent on Earth. How does the church fare in dispensing grace for the perfection of nature? In order to include me, God needs to dispense grace. I accept His grace but he gives it.

There are those who need grace from the church. It is their role to receive it, however, it is the church's, our role, to dispense it such that we can perfect their nature insofar as we connect them with God, with the Body of Christ.

Later in the same letter, he writes,

"My grandfather, I'm told, used to say that he 'looked foward to having some very interesting conversations with St. Paul when he got to heaven.' Two clerical gentlemen talking at ease in a club! It never seemed to cross his mind that an ecnounter with St. Paul might be rather an overwhelming experience even for an Evangelical clergyman of good family. But when Dante saw the great apostles in heaven they affected him like mountains. There's lots to be said against devotions to saints; but at least they keep on reminding us that we are very small people compared with them. How much smaller before their Master."

I, like C.S. Lewis' grandfather, in my pride and vanity tend to have an inflated view of who I am, and therefore of my arrival in heaven. Do I actually think everything will stop and St. Paul will be looking for me to have a cup of coffee and discuss some fine point that I think I have a handle on. This is the same Saul who met Jesus and became Paul who has been with the Lord for a couple thousand years. I agree with Lewis in agreeing with Dante, that encountering the greats of the faith will be like encountering mountains, and how does one interact with a mountain.

Actually I think I might have more of a chance of coffee with my mentally handicapped friends, assuming the elect do such things like coffee in heaven. If God allows us to keep memories of life in heaven (some He couldn't I would suspect in order to make heaven truly blissful), but if He does, I would love to have a conversation reminiscent of what one finds in Keyes' Flowers for Algernon.

McNair

Deconstructing disability: Role perceptions/sick

In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following role perceptions are from Wolfensberger.

4. The deviant as sick
Another role perception described by Wolfensberger, is the disabled person as "sick." They are a diseased organism. As stated previously, that is why a medical model was adopted to treat them. People with disability are patients, not students or residents. Decisions are often made by medical personnel. It is true that there are many areas in which medical personnel are the best to make a particular decision, however, often they are not.

I once had the opportunity to work with Dr. Richard Koch. Dr. Koch at that time, was the director of the national collaborative PKU study(phenylketonuria, an inborn error of metabolism which without treatment can result in severe mental retardation). Even in the midst of the powerful research he was doing which ultimately affected the lives of thousands of persons experiencing this genetic disorder, his perspective was that the medical profession had very little to offer most people with disability. They could provide a diagnosis most of the time, but beyond that, it was the job of educators to improve the lives of the persons with disability.

Educators have at times adopted this same perspective, referring to their services not as education, but as "educational therapy."

The take home lesson of this particular role perception is that people with cerebral palsy are not contagious and neither are persons with down syndrome. The appearance of having a cold has to do with aspects of their disabilities (although I guess they could at times also have a cold). People do not "suffer" from down syndrome in the same way that someone suffers from the flu.
Additonally, there isn't a medication, for persons with down syndrome or cerebral palsy or most other forms of disability that makes it go away.

The life experience as persons with down syndrome is their life experience. How could a person with down syndrome, a congenital genetic syndrome, know an existence other than that which they were born with? Those who are less disabled cognitively, might realize they are different, but I suspect such thoughts are atypical.

Personally, I can imagine what it might be like to be blind or regularly use a wheel chair, but I really don't know. I do have some experience of feeling different because of a lack of math ability. Such a problem is hardly comparable to blindness or other disabilities, however, it can be used for a point of discussion. I am amazed at people around who understand things which I don't, but I really don't know what it is like to understand those things. My son, for example, was doing advanced calculus as a high school senior. I don't know what it is like to have that level of math ability. I guess I can imagine being able to understand something that I don't understand, but that is about the limit for me. As a medical student, I could imagine being able to take in all of the information provided, commit it to memory, and then retrieve it as necessary to answer questions on a test or from an instructor. However, the fact that I flunked out of medical school indicates that I was in a place that was beyond my ability to do those things. I know that I largely only think of myself as different when the environment that I am in makes me feel that way (e.g. medical school). In other environments, I appear to have a level of understanding beyond many of those who are in the environment with me. In those environments, I have the ability to either accentuate my strengths in comparison to another's weaknesses, or attempt to integrate them with myself and myself with them. I have a notion of what it is like to be them and they have a notion of what it is like to be me, but we really don't know.

I can remember my father used to talk with frustration about a comment my grandmother would make when she was feeling depressed. She would say, "Nobody knows how I feel." My father, a person with severe diabetes, chafed at that statement, saying, "Well, nobody knows how I feel." Which really didn't help my grandmother.

I believe this is the same for most persons with cognitive disability. They don't know how I feel and I don't know how they feel.

One thing I have to get through my head, however, is that their disability is their life experience. They are not sick, they have a different life experience. If I treat them as if they are sick, I project on them something which they are not feeling and I illustrate my own ignorance about what their life experience actually is.

McNair
(fcbu)

Deconstructing disability: Role perceptions/object of pity

In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following role perceptions are from Wolfensberger.

3. The deviant as an object of pity
Once it was understood that persons with cognitive disability were not actually a menace, their perception largely changed from a menace to an object of pity. They needed to be placed in environments where they might be protected. A medical model replaced the educational model. So health became the primary concern, not education.

I can remember working at an intermediate care facility for kids with severe to profound mental retardation, where one of the children was given a new pair of tennis shoes. As with anyone, after a few hours, the student developed a blister on his heal, which then began to bleed a bit. Once this came to the attention of the nursing staff, all educational programming was canceled for that student indefinitely into the future till the blister healed. After all, you couldn't expect the poor child who has already experienced so much to have to endure going to school.

This experience illustrates this perception. There are few demands for growth, no "risks" are taken, and the person is infantilized. This is a demeaning position for one to be in. Later in the development of the disability movement, one of the rallying cries was that people need to be afforded the "dignity of risk." That is, that if someone is constantly protected, he will never grow. Risk is not ambraced in a cavalier fashion, like life is some extreme sport, however, dignity does come with risk. It's like the first time your parents gave you the car keys. Risk was involved but it was a calculated risk, an informed risk which moved you to a new level of responsibility. Imagine if you were 25 and were still waiting for your parents to trust you with the car keys. You would feel angry and humiliated at the paternalistic protective environment you would have to endure.

Christians often will, with the best intentions, make comments which illustrate this perspective. We see a person with disability acting in an inappropriate fashion, and someone says, "He can't help the way he is." Well, nine times out of ten he probably can help the way he is, and needs to be told to "cut it the heck out!" I remember a great scene in the movie "Almost an Angel" where a guy in a wheel chair, upset about the fact that he is disabled, acts obnoxioulsy in a bar. A character played by Paul Hogan (Crocodile Dundee) tells him to quit acting like a jerk. The guy doesn't act right, so Paul Hogan sits in a chair, so he is at the guy's level, and punches him in the nose. That is so refreshing in that Hogan sees the man in the chair as a man, not as a disabled man, and treats him like a man.

Another comment sometimes made is that the person with disability is "suffering from his condition." Now there are people who actually suffer from disabling conditions, and I would in no way belittle that. However, to many persons with disability, their condition is the only experience they have in life, so they don't suffer from the loss of some capacity as a person who might have acquired a disability later in life would. If I project suffering on another person, I will either inappropriately see him as some sort of hero, or an object of pity. Neither of these characterizations apply to the average person born with a disability and do little to normalize them to the general society.

And then my personal unfavorite, "There but for the grace of God go I." So, the obvious conclusion is that you have experienced the grace of God, she didn't. The sentiment I understand. Yes, perhaps I should be grateful that my life experience is what it is. But I do little for the person with disability or myself for that matter in just celebrating that I am not disabled. A better reaction would be to celebrate the grace of God to you by doing something to help, befriend, support, or do something positive with the life you have received.

It is also interesting to contrast this statement, however, with the response which Paul relates when he asks God to take away his "thorn." Paul says that God relates to him that, "My grace is sufficient for you." If that is indeed the case, Paul might be able to say, "Here by the grace of God go I" as he carries his disability.

Somehow there is something which is not entirely negative about disability that we as people just don't appear to get.

McNair
(fcbu)

Deconstructing disability: role perceptions/menace

In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following are from Wolfensberger.

2. The deviant as a menace
At the turn of the 18th to 19th century, a variety of things happened relative to persons with disability. The birth of institutions 50 years prior (a very positive thing at that time) caused parents to come forward with their children with disability so they might be served by these, "palaces . . . for the indigent and infirm, the chosen friends of our Lord Jesus Christ" (Edouard Seguin, 1854). People at the time began to wonder at all those who came forward. Then there was the urbanization of America where persons who were successful in an agrarian society were not in the cities. The IQ test identified even more with low IQ's. Although these people had always been in the community, they were somewhat hidden. However, this growth in the numbers of persons with disability appeard to be a real growth, an epidemic. At that time, the public was aroused to fear.

Persons with disability became associated with the social problems of the day (crime, degeneracy, poverty, etc.). and were vilified. The insitituions changed becoming places of segregation from the community, for protection of the community, and segregation of the sexes of those with disability, to stop their out of control reproduction.

It is important to note that there is often evil perceived in what is not understood. Evil has been perceived in persons with disability through the centuries. Earlier in this blog, we noted how the disciples of Christ asked who sinned that a particular child was born with disability. Jesus refutes this notion, however, sins of parents or of the disabled individuals themselves as the cause of disability is a wrong notion which lingers in the church today. If I feel that a person who is dysmorphic in appearance is that way as a result of sin/evil, to some degree I will treat that person as a menace.

The proof that these attitudes pervade can be seen when someone attempts to place a group home for adults with mental retardation in the community. Although these homes tend to be better maintained than the community average, fears of violence or sexual perversion on the part of the persons with mental retardation enrage the community and people attempt to keep the homes out. The thing that always amazes me, is how these perceptions of persons with disability as menace, are so close to the surface in society's thinking, and how quickly they are verbalized with little evidence to support them. People suspect that this is the way these different looking people are, and when someone mentions their irrational fear, they just pile on.

People truly do see evil in what they do not understand.

McNair
(fcbu)

Freaks (continued)

Five years before the release of the movie "Freaks," Supreme Court Justice Holmes stated the following in relation to imposed sterilization of persons with severe disability.

"We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetents. It is better for the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover the cutting of Fallopian tubes . . .Three generations of idiots are enough"(May 2, 1927).

This is just an example of the ignorance and fear that swirled around persons with disability at that time. The thinking was that they were breeding almost uncontrollably, and the only way to stop their growth in numbers was through their sterilization. But needless to day, sterilization would have had little or no effect as most persons with disability are born to nondisabled parents.

The above quote, which I shared last night in a Cal Baptist class I am teaching, illustrates how "Freaks" took people who were misunderstood and feared (when in reality they were just people, and in some cases cogntiviely disabled people) and via a horror movie biased an already discriminatory public towards them. A modern equivalent does not come to mind. But you have a somewhat helpless group, many of whom cannot even understand the most basic of things occurring around themselves, who are hated and feared for totally irrational reasons, and a film maker plays on those stereotypical attitudes by portraying them in a manner which supports the destructive perceptions. Now I am sure that as a result of the film people didn't go out and kill masses of disabled people (at least not in the US, as part of the eugenic movement it did occur in Germany, although I suspect the film had little to do with that), but it surely supported the attitudes under the surface which were governing the inappropriate treatment of those persons which continued on for another 30 years. Vestiges of those attitudes persist today.

McNair
(fcbu)

Deconstructing disability: role perceptions/subhuman animal

In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following are from Wolfensberger.

1. The deviant as sub-human animal
Considering the perceptions of persons wtih disability in the past, particularly during the time when institutionalization was prevalent, persons with severe disability appeared to be being perceived as animals. Some of the evidence included abuse resistant environments, easily cleaned environments (even to the point of being hosed down), extensive soundproofing, objects placed out of reach, and many locked areas. The types of foods served seemed to imply a lack of discrimination in those who were eating them. Similarly, rooms were without windows or windows were highly placed and those living in the institutions would be unable to see out of them.

People spoke of keeping clients, rather than interacting with people. We see protected nurses' stations reminescent of a scene out of "One Flew Over the Cuckoo's Nest." Residents are not expected to learn or develop appreciably. People also spoke of "garden variety mental retardation" or even referred to a person who was profoundly disabled as a "vegetable."

There was the abrogation of human emotions or sensibilities such as shame, or modesty. Even as late as the 1970's severe aversive stimulation was used as a "training" technique, in particular with people with autism. The implication was that such severe aversives were necessary as the trainees had no feeling of pain or sensations were diminished in comparison with non disabled persons.

How do these perceptions persist today? I honestly think that the situation has improved for persons with more mild disability. However, this perception lingers in the perceptions of persons with more severe types of disability. I have been in situations where a young woman with profound retardation had her diaper changed by an open door during the passing period at a junior high school (that is, untill I shouted at the teacher to "Shut the door!"). I have been in other situations were private student information was posted on the wall of the classroom, or the students' privacy was not protected in other ways. I have heard teachers speak about students in negative ways in front of the students because "he can't understand what I am saying anyway."

One of the first things one should do in visiting an environment populated with persons with disability is to look carefully at that environment. The appearance of the environment will provide an indication of what those who are managing the environment think of those who populate it. You will learn whether those in charge think those in the environment are safe or dangerous, are in control or out of control, should be treated according to their age, are learning or are being maintained, are sick or healthy, are people or otherwise.

McNair
(fcbu)

Freaks

I had been reading the reviews of the release to DVD of a film made in 1932 entitled Freaks. The critics have acclaimed the picture as one which places people with physical disabilities (mostly) in a positive light in comparison to the evil of those who are not disabled. The first day that the DVD was available I bought one, but hadn't had the opportunity to watch it till last evening.

My first impression is as a historical piece which provides insight into perceptions of persons with disability at that time in American history. Many of the stereotypes are supported in the film.

I must state that the film by design is a horror film, and the disabled actors (at least those with normal intelligence, there were some who were severely cognitively disabled), must have been aware of how they were being portrayed. In spite of this, additional material provided on the DVD indicates only one actor appears to have felt the experience was a positive one. The film's disabled actors were largely carnival side show "performers" so the opportunity to appear in a film was likely seen as a positive carreer move. Several of the "little people" or actors with short stature disabilities appeared in other films including "The Wizard of Oz" and apparently had relativly successful careers.

In the additional material, each of the actors in the film, disabled or otherwise, are discussed briefly. It is noteworthy to consider the careers of the disabled actors. To the DVD's credit, side show performance is treated with some degree of respect, but the comparison made between a singer with an unusually good voice and a person with a particularly aberrant disability is a stretch. Still each actor's career was discussed, including films and other work performed as well as some information about their personal life.

It is true that in the film itself, the beautiful trapeze artist and the handsome strong man are the evil characters who attempt to take advantage of one of the "disabled" members of the side show. In the climactic scene the side show performers are going after the two. The side show performers are portrayed as a disabled gang on an evil hunt. Even the character with no arms or legs attempts to move across the muddy ground with a knife in his mouth. But the thing which really disturbed me, was the poor severely mentally handicapped fellow (a "performer" who most of his working life wore a dress), who was also crawling across the muddy ground with a knife in his mouth. This idea of persons with mental and other disability as being evil was actually pervasive in the early 1900's and even today might cause someone who doesn't know better to pause and wonder if such people are really capable of such violence .

At the time of its release, the film took an already devalued group who were feared for no reason other then that they were misunderstood (largely on the basis of appearance), and puts afinger on this irrational fear, not to squelch it, but rather to inflame it. The film was probably deserving of censorship in received at the time of its release (in hindsight) although the issues causing it to receive the thorough examination it did, were probably unrelated to my concerns.

It provides some insight as a historical piece, but not for the average viewer. One wonders how much actual change has occured in the minds of the regular viewers of the 1930's as compared with those today. Many stereotypes still persist, 72 years later.

McNair

Deconstructing disability: New feet

As I was driving into work today, I heard a commercial for a place called "New feet." Apparently at New feet, you can have a model of your foot made, and they then design foot supports that you can put into your shoes that according to their claims cure just about any back or leg problem you might have (by the way, the supports can fit in any shoe!). Anyway it brought me back once again to the notion of prefall versus postfall in relation to disability. Did feet naturally degrade over time before the fall? To ask in another way, did feet degrade (fallen arches, etc,) as a result of the fall, or were they degradable prior to the fall. This is important as it once again gives an indication of how disability fits into the scheme of God's creative design. Would people have foot problems prior to the fall or did our feet undergo a change as a result of the fall.

It is a principle that creation is degrading, as the Bible says, it's groaning.
"For the earnest expectation of the creation eagerly awaits the revelation of the sons of God. For the creation was not willingly subjected to vanity, but through Him subjecting it, on hope: that also the creation will be freed from the slavery of corruption to the freedom of the glory of the children of God. For we know that all the creation groans together and travails together until now. And not only so, but also we ourselves having the firstfruit of the Spirit, also we ourselves groan within ourselves, eagerly expecting adoption, the redemption of our body. . ." (Romans 8: 19-23). Clearly the degredation of all creation could include the degredation of our bodies in the form of genetic changes, engineered obsolesence, etc. The degredation of of our bodies could include aspects of physical degredation, the kinds of things which could use "new feet." Yet at the same time we must factor in the body's built in means of correcting the results of infection and injury. These processes might have been the gift of God to deal with bodily degredation and injury at the time of the fall, or might reflect the creation prior to the fall.

McNair
(fcbu)

Deconstructing disability: the tragedy of disability (continued)

If you have been reading this blog, you might think that I live in some kind of a dream world in relation to understanding many of the hardships involved in having a family member, particularly a child with disability. I have spoken of the societal construction of disability and have tried to break that down. It is true that many of the problems which people face relative to disability are related to the perceptions of those individuals and their families by the community. The community has a misinformed notion of what disability is, what it means, etc. However, many of the difficulties which accompany disability are hard reality, they are not constructions of society.

The research literature indicates that a child with a disability is a significant stressor on a marriage. Siblings are changed as a result of growing up with a disabled brother or sister. Some forms of disability are accompanied with severe, bizarre behavior problems difficult to understand let alone manage. The difficulty of finding and managing psychotropic drug regimens, which can create another whole range of behavioral and other issues, is a significant problem. So there are many realities associated with being a person with a disability or parenting a person with a disability which can be quite difficult.

What does the Bible say about these difficulties?

Paul describes how a "thorn in the flesh was given to me" (2 Corinthians12:7-9). Some speculate that he might have had epilepsy. So, Paul himself actually had the thorn, not a son or daughter. Paul says, "I entreated the Lord three times that it depart from me." This would be the typical reaction of anyone with a "thorn in the flesh" but God didn't remove the thorn/provide healing. Rather, he says that "He said to me, My grace is sufficient for you, for My power is perfected in weakness." He goes on to say, "Because of this, I am pleased in weaknesses, in insults, in dire needs, in persecutions, in distresses, for the sake of Christ. For when I am weak, then I am powerful."

The research literature describes one of the most common questions of parents at the birth of a disabled child is "Why God?" But verses like Proverbs 3:5 remind us to "trust in the Lord with all our hearts and not lean on our own understanding." This was further illustrated in the book of Job. Job is beset with terrible catastrophies which have taken his family from him, taken his livelihood from him, and left him covered with boils and a nagging wife. After much questioning and accusations on Job's part, he finally meets the Lord. After some tough questions from God, Job responds (Job 42: 1 and following) "I know that you can do all and no purpose is withheld from you. Who is hiding counsel without knowledge? So I declared, but did not understand things too wonderful for me; yea I did not know. . .I have heard of You by hearing of the ear, but now my eye has seen You; Therefore I despise myself, and I have repented in dust and ashes." It is interesting that although the story relates the difficult questions Job asks of God, he doesn't ultimately condemn him for asking questions. In fact, he condemns his friends for condemning him. But the point here is that the Bible speaks of how God is in control. Our key response might be to repent as described in yesterday's blog, but the take home lesson is that God is in control.

Paul also says in Romans 8:18, "For I calculate that the sufferings of the present time are not worthy to compare to the coming glory to be revealed in us." That is hopeful, but it doesn't help a lot when I wake up to my son having smeared his feces on the wall. It excites me to think the future will be better beyond my comprehension, but the present may still suck. I need God's presence to get me through the present as I in faith look toward the future.

The fact that God's grace is sufficient and that He is in control are a great comfort to Christians with disabilities or Christian families with a disabled family member.

McNair
(fcbu)

Deconstructing disability: the tragedy of disability

In the following passage, Jesus seems to worry less about the tragedy which befalls the victims, and more about repentence.

Luke 13:1-5 And some were present at the same time reporting to Him about the Galileans, whose blook Pilate mixed with their sacrifices. And answering, Jesus said to them, "Do you think that these Galileans were sinners beyond all the Galileans because they suffered such things? No I say to you, But if you do not repent you will all perish likewise. Or those eighteen on whom the tower in Siloam fell, and killed them, do you think that these were sinners beyond all men who lived in Jerusalem? No, I say to you, But if you do not repent, you will all perish likewise.

This passage has always impressed me as it gives an insight into Jesus' thinking about people suffering "things." In this case, death, but arguably the principles evidenced here might be applied to other areas of suffering. The principle seems to be that bad things happen to people indedpendent of whether or not they have committed particular sins in a particular area. Bad things happen to good people. The Gallileans were murdered, it appears, and the 18 happened to be in the wrong place at the wrong time and died as a result of the tower falling. Jesus' response is that these things happen, but the question is repentence. If you don't repent, you will experience a similar result. It appears that the similar result is that you will come into God's presence via death in an unprepared manner: you haven't repented.

So it appears that the response to tragedy is preparation before it occurs and some level of acceptance when it does occur.

What about the "tragedy" of disability? Earlier in this blog, we discussed the difference between congenital and adventitious disability. In some ways, it is the adventitious disabilty which is the most tragic. If I have been able to see and now cannot, I mourn the loss of my vision. However, if I have never had vision, I really don't know what I am missing. If I develop Alzheimer's disease, I lament the loss of my faculties. However, if I have never had the faculties in the first place, I once again, don't know what I am missing.

The congenital disability might be tragic to family members, but in many ways they are reflecting their impression of the unknown, the "death" of the normal child who was not born or the mistreatment the individual might expect from society, not the perceptions of the actual child born. He will never be a doctor (assuming he would have wanted to be one anyhow), or he will never be a football player (assuming he wouldn't have rather have been a musician). The fear of the future born out of ignorance (in a positive sense) cause the suffering. There is the 'chronic sorrow" described in the literature when persons with some forms of disability do not progress through the normal life changes that people typically move through (graduation, marriage, child bearing, etc.), and these notions might also impact the suffering of family members. But the picture isn't typically a bleak as anticipated. People with cognitive disability do live on their own, or with supervision or in group homes. They do have jobs which they are proud of, and they do make contributions to the community through their work and tax paying. So knowledge about the future life of persons with disability does provide positive expectations to counteract the negative.

The impressions of the child born about himself, his world, are that he is who he is. I personally dream about what it would be like to be a great musician. I see pianists and hear guitarists and think it would be fun to be that good. But I don't lament not being able to play the guitar or piano. I don't know what it is like to be a musician, let alone a great one. The child born with disability has nothing with which to compare his experience. It will take many years before he understands that he is "different" if he ever does. Typically these understandings of differentness come from the manner in which he is treated, they are societal constructions reflected in behavior, they are not necessarily due to anything specifically about him. They are caused only indirectly by his disability, and need not be the result of disability at all.

Friends of mine who are cogntively disabled, I would suspect, do not feel mentally retarded when they are with me, because we just have the same kinds of interactions I would have with anyone else. We talk about their work, their joys or frustrations with life, we joke and are serious. It really isn't any different than conversations generally that I would have with any other person. However, they relate that there are people who interact with them differently because of their disability. Those people talk down to them, or treat them like they are stupid. But that is more of a reflection of those people than it is a reflection of the person with cogntive disability.

Most forms of disability should be treated as irrelevant characteristics of the individual in most social situations. Do I act differently with people on the basis of their skin color? I shouldn't. Of course I am careful in taking them into situations where people will act with hostility toward them on the basis of predjudice based on skin color. But that has no impact on my interactions 99% of the time. The same is true of persons with cogntive disability.

As I look at any person, I see them as a collection of strengths and weaknesses. I support them in areas of weakness (assuming I have the ability myself to do so) and leave them alone in areas of strength. I don't look at a person and on the basis of something I see with my eyes, assume that they are disqualified in a particular area of life. This perception influences the manner in which I characterize disability. That is, do I see it as a tragedy or as an aspect of human diversity which like any other human difference has positive and negative aspects associated with it?

If I see persons with disability as evidences of diversity, I become more focused on their repentance than I am on their tragedy. As a result, I see them as more like me than different from me.

McNair

(fcbu)

Deconstructing disability:aging

A colleague of mine, Dr. Nancy Contrucci and I met briefly today to discuss common research interests. In the midst of that discussion, we began talking about prefall/postfall notions of disability. She brought up the issue of aging.

In the post fall condition, aging carries with it the idea of diminishing faculties (trust me, I know) be they physical or mental. The question is what were the prefall conditions associated with aging? One must assume that many of the reasons which can result in diminishing faculties were present pre fall. I can still fall and hurt my knee, or bang my head and hurt my head. Obviously there was the possibility that I could make decisions which could be detrimental to me even though they might not have caused death as did the decision toward disobedience. Pain receptors were pre fall, I would assume, in order to teach us safety. Bleeding and clotting I would assume, were pre fall to heal injuries the body received in life. Redundant bodily systems were present to compensate for loss. New fingernails could be grown should one be injured and fall off, and baby teeth were shed when adult teeth came in.

Yet, I would assume only one set of adult teeth came with any adult, and nerve damage was irreparable. You probably couldn't inadvertantly get a stick in your eye and hope to grow another.

Obviously there was a dramatic difference before and after the fall in innumerable ways. However, did the immune systems which are built into people to fight disease only arise after the fall when disease could kill? Was blood clotting only necessary after the fall as no one was ever injured before? Did no one ever stub their toe and loose a toenail before the fall?

These are important questions because they speak to the role that human differences, expressed by societal construction as "disabilities" may have in God's design of human beings.

We must always keep in mind that an omnipotent God is not surprised by anything in his creation, so the notion of disability, whether congenital or adventitious (the result of aging or disease, injury, etc.), is not something that took him by surprise, and bodily correction of injury appears to be planned for to a significant degree as evidenced by the systems for repair observable in our bodies. We experience repair when our systems return us to a place of normalcy as compared with the rest of people. If our systems cannot bring repair, we might be characterized as experiencing disability or in more severe cases death. This disability might be short term, like a broken arm, or last indefinitely as in cognitive disability. We know for sure that death came as a result of the fall, so someone severely injured prior to the fall must have either experienced healing, or was maintained in a living state while continuing to experience the injury, which hardly sounds like paradise.

McNair

Deconstructing cognitive disability: etiology and societal constructions

The etiology of disability can basically be categorized in three different general areas. There are disabilities caused by genetics, disabilities caused by trauma and disabilities caused by the environment. Questions related to the cause of disability can dovetail with the understanding of the why of disability.

The notion of disability caused by genetics may seem to be the most "God caused" notion as the cause of the disability is built into the makeup of the parents of the child who has the disability. Often, these disabilities seem to arise "out of the blue." Although the biological basis of such disability is as predictable any other cause effect sequence, they don't seem to be so, particularly if the disability is the first appearance within a family.

A geneticist/professor of mine used to state that each of us carry about 11% of out genetic make-up which if paired with a spouse who also has that same 11% genetic component will result in disability or death in the offspring. I suspect this percentage was an estimate on the basis if his experience, however, it causes one to pause in thinking about the various factors which would result in the pairing with another person (how a couple met, etc.) and the coming together to have a child with that other person. The take home lesson, is that each of us carry the potential to produce offspring with disability, genetically, if the conditions are "right." The reason why this potential is carried around in our genetic complement is a question for theologians. We will be discussing this question, however, for a moment, lets be clear on who we are talking about when we speak of persons experiencing disability.

Elsewhere in this blog, we have discussed the notion of the range of variability within the population. That is, the "normal" variation within the population. We note that Jesus, for example, was intelligent and physically strong, however, we also note that he was not necessarily remarkable in his physical appearance. Jesus himself reflected the range of normal. The question remains, however, what is the normal range? That is a difficult notion to nail down as normal, above normal or below normal is often environment specific.

I remember as a high school student, I was able to make the high school basketball team. That to some degree indicated that I was in the upper echelon of boys playing basketball at that particular school. When I went on to college, I found that the players on the basketball team were better than those at my high school. My skill level was suddenly much more average (and that was at a division 3 school). Should I attempt to play at a division 1 school, or for the sake of discussion at the professional level, I would not only be unable to compete, I would probably appear "disabled" by comparison with the athletes at those levels. So depending upon what particular portion of the population, within which particular environment, I can appear disabled, average or even above average.

Within our society we do a variety of assessments to attempt to determine what is the average for persons having particular characteristics (age, ethnicity, even urban or rural life experience among others). Depending upon what the characteristic is that we are assessing, we then develop interventions to take those who are below a particular level up to or above that desired level in order to facilitate life success. Now in our society we do not do basketball assessments, however, if we did, such assessments would identify those who are in the gifted range, those in the above average range, those in the average range, those in the below average range and those in the "disabled" range in their basketball ability. The fact that people are not being labeled as having a "basketball disability" is a reflection of what our society values in terms of assessing in all individuals. It’s nice if you are good in basketball, however, it is in no way required. When we meet someone who is good at basketball we celebrate that in the same manner that we would celebrate any strength in an individual. However, we don't commiserate with families who find that their child does not have basketball ability as such ability is not valued by all people in society.

For people with disability, particularly cognitive disability, one of the issues where they often evidence of weakness is social skill. Obviously social skill is something which is wildly divergent across groups and cultures. Social skill is perhaps the most difficult of skills to master particularly as a person’s range of accessed environments increases. Using the same range of ability level that we used with basketball, we will find that there are those who are gifted in the area of social skills, there are those above average and so on. However, in contrast to basketball ability, social skills are valued by society and one is personally included or excluded on the basis of their social skills. Society is very unforgiving in the social skill arena.

One way to increase the range of normal is to change the environment. In some ways the notion of disability changes as the environment changes. I suspect there are actually families for whom basketball is life to whom a family member who lacks basketball skill would be considered tantamount to having a disability. Unfortunately, individual Christians and churches often reflect society in a negative way. At times, churches can be more disability regarding than the secular world. This should never be the case. If disability can largely be a social construct, then the environment reflecting the social construct can change.

We have seen this occur for a segment of American society. In my lifetime, homosexuality has gone from psychological disorder to mainstream. It has been changed as a societal construct among some groups of people.

But what of areas of disability which are not socially constructed? The question is whether disability is part of the design of humanity or an aspect of the fall into sin. For a moment lets move away from the "gray" areas of disability which may be the result of a social construction. So we are talking about perhaps the most severe of disabilities, including more severe areas of mental retardation, or severe physical or sensory related disability. However, even these forms of disability must be segregated. The societal construction of deafness has developed to the point of becoming tantamount to a cultural difference rather than a disability. Blindness has not developed in this manner, however, people who are blind are finding their way into the mainstream on the basis of their own significant efforts, those who have advocated on their behalf, and technological advances. Even those with severe physical disability are making significant progress in deconstructing severe physical disability as a societal construction. Yet you only need to go to IHOP with your friend with severe physical disabilities to find out that if physical disability is a societal construction, it is still firmly entrenched. However, if the example of blindness is any indication, there is the potential for greater inclusion and acceptance in the future. The Americans with Disabilities Act has help in the deconstuction of physical disability, however, there is still a long way to go.

So the remaining area of disability to be considered is severe cognitive disability which once again is caused by genetics, trauma and the environment and is the focus of this blog.

McNair

Deconstructing cognitive disability: an intro

In a recent issue of World magazine, Andree Seu has an editorial entitled, "House of mourning: Funerals are opportunities to hear the best, and worst, of theology." He states, "A collective spiritual insight almost breaks through, then is submerged again . . .But I am not here to desconstruct funerals." Probably all of us have had this same experience. If you haven't, you probably need to study up on your theology a bit. But people's ideas of death are not unlike their ideas about disability. It's like, they heard something somewhere before, can't really recall when, but they are sure it is in the Bible or something, and whatever the sentiment, it kinda makes them feel better about the situation. So we have people looking down on us from heaven, we have spirits still with us, we have people who haven't really died, we have people being reincarnated, and so it goes on.

But the same kind of rediculous ideas pervade in spiritual discussions of disability. Children with disability are special children from God. Funny how nobody wants them if they have the choice and often will choose to abort special children from God. If they were actually special children from God, perhaps the church would be more interested in serving them.

Or parents are told that they are special in that they were "chosen" to have a child with a disability. It would seem that chosen parents would be valued more than they are. It seems too often that "chosen" in reference to parents means "You are on your own, baby." That is, you were chosen, I wasn't so it is up to you to figure out how to help, integrate, educate, etc. you child.

Lets work through some of these misguided issues from a theological perspective. We will attempt to take on each one (that I can find) and address them. Lets see where we end up?

McNair
(fcbu)

1 Corinthians 1: 18-30

From the New International Version, 1 Corinthians 1: 18-30.

"For the message of the cross is foolishness to those who are perishing, but to us who are being saved it is the power of God. For it is written,

'I will destroy the wisdom of the wise; the intelligence of the intelligent I will frustrate'

Where is the wise man? Where is the scholar? Where is the philosopher of this age? Has not God made foolish the wisdom of the world? For since in the wisdom of God the world through its wisdom did not know him, God was pleased through the foolishness of what was preached to save those who believe. Jews demand miraculous signs and Greeks look for wisdom, but we preach Christ crucified: a stumbling block to the Jews and foolishness to Gentiles, but to those whom God has called, both Jews and Greeks, Christ the power of God and the wisdom of God. For the foolishness of God is wiser thn man's wisdom, and the weakness of god is stronger than man's strength.

Brothers, think of what you were when you were called. Not many of you were wise by human standards; not many were influential; not many were of noble birth. But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to same the strong. He chose the lowly things of this world and the despised things - the things that are not- to nullify the things that are, so that no one may boast before him. It is because of him that you are in Christ Jesus, who has become for us wisdom from God - that is, our righteousness, holiness and redemption. Therefore, as it is written; 'Let him who boasts boast in the lord."

The passage says, "not many of you were wise by human standards." This implies that there is at least one other standard by which one might be considered wise. And those who are not considered wise by human standards might be considered wise by that other standard. How might this other standard be applied?

"It is because of him that you are in Christ Jesus..." It is not because of anything about you, other than the fact that you have acknowledged him as your Lord. People with cognitive disability will also acknowledge him as Lord if given the opportunity. There is nothing about them which should prohibit that opportunity. Remember, "God chose the foolish things of the world," "the weak things of the world," "the lowly things of the world," in a nutshell, "the things that are not."

What/Who has your church chosen?

McNair

Church caused suffering

I have recently taken a position as professor of special education at California Baptist University. In the midst of meeting other "new" faculty, we had a discussion about the suffering church. That is, those who as a result of their Christian faith are experiencing persecution around the world.

I mean in no way to minimize the suffering of any Christian, however, the church is causing some "suffering" itself. At those same new faculty meetings, we were each asked to share our interests. I shared my interest in opening up the church to persons with disability. As often occurs when I share my passion in a public forum, another faculty member, also the parent of a child with disability told me of how his heart was moved to hear of my passion. He was another of the many parents who cannot bring his child to church as they are not welcome. They are sometimes not welcome overtly, in that the church will tell parents their child is not welcome. They are also sometimes not welcome by default, in that the child is exclusively the parents' responsibility when on church property. The Sunday school will accept the child only if the parent accompanies him (not just for a short time, but forever), but otherwise, there is no place for the child.

Because of the stories I have heard and the things I have read, I can't help but believe that there are many churches where overt exclusion is occurring, and exponentially more where the exclusion by default is happening, even though those in leadership in the church must know that there are families with a child with disability who would chose to attend the church if some form of program were available.

However, the exclusion of persons with disabilities is so pervasive that it is common practice, and it really takes someone up in the face of the church, to rattle their cage to get something going. As I write this, I sit here shaking my head at the implication such exclusion gives to any who observe it about who the church is and worse yet, who their god is.

If it is too much trouble to include persons with severe disability in our churches, what does that shout out to those around us about the God we serve?

McNair

Refreshing disbelief

This past week I was teaching a lesson from the book of Acts to our class which includes adults with developmental disabilities. We were discussing Acts chapter 9, and the notion of persecution or discrimination. That is, the manner in which Paul was persecuting Christians at that time. By the way, it is interesting to compare Paul holding the cloaks of those who stoned Stephen, thinking they were doing something in the name of their god, to the beheadings in Iraq. I pray that God will turn those misguided fanatics around in the same manner he turned the misguided fanatic, Saul around. Anyway, in trying to illustrate the idea of persecution or discrimination, I mentioned how there used to be terrible discrimination against people on the basis of their skin color in the United States, and how there still is in some places.

The exact words from some of the members of the class (remember these are people with cognitive disabilities) was, "That doesn't make any sense!" "That (the color of your skin) doesn't make any difference!" "Why would they do that?" The indignant disbelief of the people in the group was so refreshing.

McNair

Facilitating community

I am back from vacation. Had a great time thanks to a friend of mine, Stan Swartz. Thanks Stan!

Community is a critical factor in the lives of individuals with disabilities. One can hardly consider the spiritual life and development of these individuals without being aware of the role of community. Specifically, community plays a role in the spiritual development of these individuals. Fowler (1981) describes stage two of his "stages of faith" as being the connectedness one feels upon recognizing a world that includes more than one's self. Fowler recognizes that the first step of growth occurs through belongingness. The relationships which comprise a community can a) facilitate spiritual growth, b) be an evidence of spiritual growth and c) define the parameters by which spiritual growth is described for these individuals. This is true for all people, but perhaps in particular in relation to individuals with disability.

It also appears that community is the goal for those endeavoring to serve persons with disabilities, whether they approach work with these individuals from a secular or religious perspective (or at least should be). But what exactly is it that we are after when we say we desire community, and why do we desire it?

We could simply reply with the three areas listed above. However, such a reply doesn't provide the specifics we require to determine whether or not the goals of our community efforts have been achieved.

The state attempts to require community through enforced physical integration (as in the Americans with Disabilities Act, inclusion in schools, and programs to facilitate less restrictive settings at work and in independent living). However, the state also recognizes that although physical integration may lead to social integration, there are no guarantees that the former will lead to the latter. In fact, the supports necessary to facilitate the former often preclude the latter from occurring. The state in its efforts to facilitate community life, in the end often frustrates the development of community by getting in the way. For example, job coaches may move into a work environment to provide "supports" with no notion of the types of supports that exist naturally in that work environment (McNair & Rusch, 1991). A thorough knowledge of the environment should lead to the "light touch" that is required.

The church, however, needs to find its uniqueness in the world in relation to a variety of roles, including involvement in the lives of individuals with disabilities. As Clapp (1996) states, "For centuries, most Christians have been eager to adapt to the world and tell it that it is right. So doing, we make ourselves redundant" (p 23).

Yet even when we aren't redundant, we can often be perceived as such because of the increasingly irreligious experience of people and the debased standard of human interaction embraced by the multitudes. The church's redundancy might be perceived in two ways. First the church may actually be redundant in offering many of the same things (supports, services, programs, etc.) as secular society, or the state. Secondly, the church may be simply perceived as redundant because of the lack of experience, particularly among direct care workers, with the church. Now related to the former, if a natural setting like a church and a contrived setting orchestrated by a state agency both provide the same service to the same individual, it is arguable that the state is being redundant because the church is natural. A majority of people do not rely on the state for services although a significant percentage of people do rely on religious settings. The state, in spite of efforts to attempt to develop or find natural supports, does not often see itself as redundant, as it cannot imagine the kind of community represented by the church as actually being in existence, as unchurched caseworkers or other professionals do not have such church experience.

McNair

How would things be different? The community

For the last part of this discussion, I wanted to briefly discuss how the community would be different if the church truly was obedient in the area of disability ministry. First of all, the church would be "the church," not separate churches. It is true that it is easier to talk ecumenically than it is to live it because each denomination has a slightly different perception of what is the truth. We often find ourselves distancing from each other over arguably lesser matters of theology even though we agree on the kernel of the truth; that is who Jesus is and was. Perhaps this will always be an insurmountable hurdle in community collaboration among "the church" for ministry purposes. In my mind, however, this is an important first step.

If you take the city where I live, for example, the City of Redlands, California, Christian churches are a pervasive presence. If the churches in Redlands could somehow become "the church" in Redlands, the impact would be incredible. But as is stated in the Lord of the Rings, the power of the enemy is seen in the disarray of those who oppose him. If "the church" in Redlands made ministry to persons with disability a peculiar focus (it would be peculiar in comparison to the church worldwide) families of persons with disabilities would flock to Redlands to receive the support and compassion of "the church" there. Secular community agencies would speak of the powerful impact of "the church" in the community and the lives of persons with disabilities and their families. Even the most radically secular of individuals would have to admit, "I'm no Christian, but 'the church' in Redlands surely would make me give Christianity a good look." "The church" in Redlands truly being "the church" would be a model for the entire world.

You know when I write this blog, I come with ideas in mind, and try to expand on them in a cogent fashion. It is a discipline to get me to try to think through ideas relative to disability and Christianity. Sometimes I come up with novel ideas, novel to me at least.

This morning, I think the Lord has given me a new vision for what I can do.

McNair