“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Saturday, October 23, 2004

"Make the little children suffer," I mean, "Suffer the little children"

I was talking to a Catholic friend today. She told me how her priest didn't want kids with disability to come to catechism because they were too noisy.

"The little children were brought to Jesus for him to place his hands on them and pray for them. But the disciples rebuked those who brought them. Jesus said, "Let the little children who are quiet come to me and do not hinder them" (sorry, strike that) "Let the little chidren come to me and do not hinder them unless they are disabled" (sorry, my bad again) "'Let the little children come to me and do not hinder them, for the kingdom of heaven belongs to such as these.' When he had placed his hands on them, he went on from there." (some old texts say, "Suffer the little children to come to me")(Matthew 19:13-15)

I suspect the children in this case were perfect little angels, bright eyed and intelligent, without a blemish of any kind, and quiet, wonderfully quiet. They were also probably clean and dressed well, oh yeah, and with good social skills. You see a lot of children like that running around in third world countries, particularly 2000 years ago.

If it weren't for how wrong it is it could be laughable. "The kids are too noisy." I would love to go toe to toe with such a person and have him name 15 children with disability that he knows, and how much time he has spent with them which gives him the experience to make such claims to those under him. Have Christian leaders never heard the story of the little children and Jesus? And what was the point of them coming to him? So that he could place his hands on them, one would assume to give them a blessing.

Our response today is not only do we not want to bless them, we may actually want to curse them. "They are too noisy" or "They have bad social skills" or "They are a black hole for service" or "They will disrupt the other children." In contrast, imagine a catechism class where the teacher says, "Jesus allowed all children to come to him, and so will we. We all need to learn to accept and love all children, so as long as I am the Catechist, these children will be given access."

An accepting situation such as this truly will reflect that "the kingdom of heaven belongs to such as these."

No retreat.


Friday, October 22, 2004

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.


Friday, October 15, 2004

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.


Tuesday, October 12, 2004

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.


Thursday, October 07, 2004

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.



Monday, October 04, 2004

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.


Friday, October 01, 2004

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.