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

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.


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