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

Tuesday, August 31, 2004

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.


Monday, August 30, 2004

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.



Friday, August 27, 2004

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.


Wednesday, August 25, 2004

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.


Tuesday, August 24, 2004

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?


Saturday, August 21, 2004

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?


Friday, August 20, 2004

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?


Monday, August 16, 2004

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.


Wednesday, August 11, 2004

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.


Monday, August 02, 2004

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.