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

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.



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