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

Sunday, July 31, 2005

The Truman Show

I was watching the movie The Truman Show tonight. I have always found the movie very interesting. Anyway, one of the main characters in the movie,Kristoff, the guy who created the reality television program called "The Truman Show" makes the following statement.
We accept the reality of the world with which we're presented.
An interesting statement. In terms of the real world, I agree and I disagree with the statement.

I agree in that I don't think that I have abilities and deficits other than the ones I have come to know after nearly 50 years of being me (although I do think higher and lower of myself then I should at times). I also recognize that the world I live in is a dangerous place, and there is such a thing as evil. For me to think otherwise is a fantasy.

I also cannot project my life experience on another, or compare my life experience with another's and have any notion that how I view his life is how he will view his life. My life experience is reality to me in the same way that another's life experience is reality to him. I will at times look at others and imagine how they might feel about a particular life experience, but I really don't know the process they have gone through to understand their life and am therefore very limited in my understanding.

I disagree in that I don't have to accept the reality of the world with which I am presented if I have the fortitude to change it. The "reality of the world" for persons with disability, for example, does not reflect the reality of who they are. They may finally give in and submit themselves to the reality thrust upon them. They can also fight them with the assistance of others who also reject the reality of the presented world because it needs to be changed.


Friday, July 22, 2005

The Kallikak Family

I have been gradually collecting old and pivotal books in the field of special education. I recently purchased The Kallikak family: A study in the heredity of feeble-mindedness, by Henry H. Goddard. The book traces the offspring of one Martin Kallikak (not his real name) over many generations. Apparently Martin had a sexual encounter with a New Jersey barmaid during the revolutionary war, and then later married a "respectable" woman. The offspring of Martin and the two women are compared over time.

Published in 1912, the book embraces notions of eugenics as they relate to "morons" the term used for persons with mild to moderate learning disabilities at the time. It also predates World War 2, so we see eugenics as it relates to disability, without the memory or lessons of Nazi Germany in the background. Here are a few quotes from Goddard.
A great majority, however, having no such interested or capable relatives, become at once a direct burden upon society. These divide according to temperament into two groups. Those who are phlegmatic, sluggish, indolent, simply lie down and would starve to death, if some one did not help them. When they come to the attention of our charitable organizations, they are picked up and sent to the almshouse, if they cannot be made to work. The other type is of the nervous, excitable, irritable kind who try to make a living and not being able to do it by a fair day's work and honest wages, attempt to succeed through dishonest methods.

From all of this the one caution follows. At best, sterilization is not likely to be a final solution of this problem. We may, and indeed I believe must, use it as a help, as something that will contribute toward the solution, until we can get segregation thoroughly established.

In considering the question of care, segregation through colonization seems in the present state of our knowledge to be the ideal and perfectly satisfactory method. Sterilization may be accepted as a makeshift, as a help to solve this problem because the conditions have become so intolerable. But this must at present be regarded only as a makeshift and temporary, for before it can be extensively practiced, a great deal must be learned about the effects of the operation and about the laws of human inheritance.

I would like to think these types of attitudes do not still exist. We do have the backdrop of the horrors of the 1940's. But the attitudes which justify abortion of persons with down syndrome in the name of "quality of life" are at best misinformed and at worst evil.


Thursday, July 14, 2005

Mark 7/Isaiah 29

This people honors me only with lip-service
while their hearts are far from me.
The worship they offer me is worthless,
the doctrines they teach are only human regulations.

That is how Jesus' quoting of a passage from Isaiah 29 is reported in the Jerusalem Bible. Jesus goes on to say, "You put aside the commandment of God to cling to human traditions. How ingeniously you get around the commmandment of God in order to preserve your own tradition."

I recently visited a church where they were celebrating work done with orphans in Africa. This church has been instrumental in building and supporting this orphanage. As the slides of beautiful African children were shown in the background, the comment was made, "We are all the same in God's sight. We need to care for these children because we are all the same in God's sight." I couldn't agree more. The work this church is doing is wonderful. They are making a great impact on the lives of children a half a world away.

But what about the people in need in their own back yard? As I looked around the congregation, I saw one man who appeared to have a form of cerebral palsy. But beyond that, he was the only person in the room that I could detect as having any form of disability.

It seems that we get around the commandment of God to preserve our own traditions. In this case, the tradition is to be involved in overseas ministry which is an ourstanding tradition. But the commandment of God says we should also touch our neighbor. Our traditions of overseas ministry may have given us the perspective of less responsibility at home, particularly towards underserved people in our community.

The work I observed that the church was doing with the African orphans was beautiful! But I still wondered why that church could not see the people with disability in their own community.

The traditions of the church really do need to be shaken up because they are getting around the commandment of God. All people are created in God's image and are loved by God. But the "difficult" ones are not in churches. Why are the supposedly easier people to serve the ones who are in church if we really do believe that the commandment of God is to love everyone in the same manner that He loves us. Why are the supposedly easier people to serve the only ones that I could really prove are created in God's image by their presence in a church? I must argue too, that persons with cognitive disabilities are not really harder to serve. Someday the church will discover that.

I am reminded of the passage in Matthew 23, where Jesus is putting the hammer down on the scribes and Pharisees. In regards to tithing, he says in vers 23, "These you should have practiced without neglecting the others." I don't think it is too far out of context to say that without negelcting the important work with African orphans, we should also be working to include persons with disabilities in our communities in our own churches.

You want to buck tradition? Start bringing the retarded people to church.


Wednesday, July 13, 2005

A movement of lay professionals

This past week I had the opportunity to meet a woman who was applying for a position at the university where I work. I asked her how she as a school psychologist at a large school district was able to integrate her faith with her professional position. She related a variety of things she was doing, but then spoke of how she started a support group for parents of persons with disabilties at her church. The group met about once a month and discussed successes and failures, resources and battles with various human service agencies. She also related that her church had begun to infuse special education best practices into the Sunday school classes for students with disabilities.

I walked away from that conversation feeling that what she is doing is exactly what professionals need to be doing at their local churches. We need to bring our expertise to the church, but not for the reason you might think. You see, I believe that
it does not take special training to be involved in disability ministry
it does not take special training to be involved in disability ministry
it does not take special training to be involved in disability ministry
it does not take special training to be involved in disability ministry

Now don't get me wrong. The training professionals receive is important and contributes a great deal to their understanding of persons with disabilty. I am a trainer of professionals for goodness sake. But, what the church needs more than anything else is to have professionals model how one is to act, how one is to include, how one is to love persons with disabilities. The key attribute that we bring to the church setting is not our special training, but our experience. We have learned to see past the minor social skill deficits. Just about anything a person with a cognitive disability could do, we have probably seen before and have learned to take in stride. It is this experience of being accepting to persons with disabilties that we bring to the situation. You see, we have learned that people wiht disabilities are just people, and because we understand that truth, we treat them like we would treat anyone else.

But that experience is huge. People will say that they can't do something because they don't have training, but what they really need is experience, because experience will ally their fears better than any training ever would. And how are they to get this experience? Well, if we as professionals would be proactive in bringing persons with various disabilities to church they would get the experience. They would also have the opportunity to see appropriate interactions with persons living on the friges of society modeled for them. Perhaps through our example, those on the fringe wouldn't be on the fringe anymore because our example would break down the stigma which put them on the fringes in the first place.

It is interesting that in churches we hear that God loves all people and that God sees all people the same, that God values all people the same and that we are created in the image of God. We hear that, but we don't always see it acted out in our midst. We as professionals who love and work with persons with disability can provide the example of what it looks like to act on the notion that God loves all people the same. We can provide the example of what it looks like to act on the principle that we are all created in the image of God. We can provide the example of what it looks like that God sees all people the same. We can provide the example of what it looks like that God values all people the same. We hear such statements made in church, but how often do we see such statements acted out within our midst. You know it is funny that when we do see the act of kindness toward a persons with mental retardation, or the pastor who takes social skill deficits in stride, we are like, taken aback. It is like for an instant we are not seeing through the glass darkly. The question is why are such interactions rare? Perhaps it is because the opportunities to do real acts of kindness towards people who are in need cannot occur if the people in need are not in the church.


It is we who need to make the church reflect the community. If you are a professional in aspects of disability and there are few if any persons with disabiltiy at your church, it is YOUR FAULT! You are not doing, not being all you should be in your church. When I see a lack of acceptance at my church, I immediately look at myself. How am I providing the example of how the church should be towards persons who have been traditionally excluded. I cannot expect a church which has literally centuries of exclusion to suddenly lead the way in change. To put it kindly, the "lack of priority" of disability ministry is an inbred part of the structures of the church it would seem. The excuses for a lack of involvement which are typically provided by those in leadership have worked for decades if not centuries.


We are the ones who need to change the church. It is time for a lay movement of professionals to bring the church into obedience on issues related to reaching out to all its members with disability.


Monday, July 11, 2005

More on down syndrome

I have been thinking more about the down syndrome discussion in the last blog. Here are a few more thoughts.

With some forms of disability, the disability occurs after the person has lived without the disability for a period of time. So a person who has lived a normal life becomes injured in some way and as a result experiences disability. First of all, I think this form of disability needs to be separated from a disability like down syndrome, one that a person is born with.

With down syndrome, the life experience that the person has is not influenced by life without the disability in the same manner. That is, their experience is all they have known. Now society would approach a person with down syndrome saying,
"I am sorry you have a poor quality of life" or
"I am sorry that you are not as smart as I am" or
"I am sorry that things will be more difficult for you, in terms of learning" or
"I am sorry that society is discriminatory against you."

However, a person with down syndrome would potentially reply,
"Poor quality of life in comparison to what? This is the only life I know."
"I didn't realize you were smarter than me," or "aren't there people smarter than you?"
"This is the way I learn, are things more difficult for me?"
"Sometimes people are just mean, but sometimes they are nice."

However, the problem is that on the basis of the statements I made about quality of life, etc., I then make the decision that the life of a person with down syndrome is not worthy of living. Our society has convinced many that the best, the wisest thing to do when you are pregnant and meet certain criteria (advanced maternal age, elevated levels of a particular protein, etc.), is to have a prenatal diagnosis done so the presence of an extra #21 chromosome (the cause of down syndrome) can be detected, and the unborn baby aborted. I am pretty sure that it is considered malpractice for a doctor NOT to suggest prenatal diagnosis should the criteria for a higher chance of down syndrome be present.

Now for years, I have been aware of these procedures, and although my wife and I chose not to do prenatal diagnosis because abortion of any form was not an option for us, it suddenly struck me that the end desire for these procedures would be the eradication of persons with down syndrome from the world. In the same way we might say, "Thank goodness we have done away with polio in the United States" there are those who would say, "Thank goodness we have done away with down syndrome in the United States." That must be the goal of prenatal diagnosis and abortion of these individuals. In order to prevent this from happening, you as a pregnant woman/family must actually tell the doctor "No" in terms of doing prenatal diagnosis and potentially abortion. The assumptions in these interactions are you meet the criteria, you do the test, you have the abortion. That is the assumption.

But lets think about what down syndrome is. It is not something you get, like a disease or something. It is not something you experience as a result of some injury, or lack of oxygen during birth, or something. It is genetically who you are. Just like I am white and others are black or brown, it is genetically who you are. I cannot hope to be cured of my white skin color. The only way to prevent my birth as a person with white skin color is to abort me, as that skin color is a part of who I am. Down syndrome is a genetic part of who those persons are. So through abortion, I am not preventing mental retardation, I am wiping out people who have a particular genetic trait that is a part of who they are, simply because they have that trait and I think it is bad.

Now I have probably known over a hundred persons with down syndrome over the years. I have come to believe that their down syndrome is a characteristic of theirs much like my skin color is a characteristic of mine. My skin color impacts much which will happen to me throughout my life. In the United States, it may mean that I have an advantage over those with a different skin color. It affects how much sun I am able to take before I get burned. It has cultural repurcussions to me. But when you boil it down, it is only culturally that my skin color really has any relevance to me. The society around me will decide on the basis of somewhat random social constructions whether or not it is good or bad to have white skin. But outside of social constructions, my skin color is largely an irrevalent characteristic. Should society decide it is bad to have white skin, I will have trouble in my life for that reason. But in reality the decision that white skin is bad or good is not based on anything rational.

I believe the same thing about down syndrome. I know people with down syndrome who live at home with their families are are loved by them. I know others who have apartments or are supported to live in the community. I know others who have jobs. I know some who are in adult day care, or do not work. But for most, when you distill their life experience it is the same as mine. They have friends, they have a job, they live in a home or apartment, they are just people. Now because they will not go to college, or take longer to learn some things, or look different, society has stigmatized them, convincing many that they are something different, something other than human even, that there is rationality in the decision to prenatally diagnose and abort them. To me down syndrome is somewhat of an irrevalent characteristic. It is particularly irrelavent when one is making determinations of human worth.

For the millionth time, I heard someone at church say that we are all the same in God's eyes, we are all equal in God's eyes. You know I am sure the woman who said that yesterday meant it when she said it and I really believe it as well. But if it really true that we are all equal in God's eyes, why are we looking for unborn babies with down syndrome so we can abort them? They think they have a pretty good quality of life. God forbid that we put ourselves in the position of taking the lives of others because they don't meet our criteria for a good quality of life, particularly when most who are making that determination don't even know what their quality of life is.


Thursday, July 07, 2005

"A More Perfect Society"

In the July 2005 Christianity Today, there is an editorial piece by Angela Beise entitled, "A More Perfect Society: Why I wouldn't want to live there." In the article, Ms. Beise describes an interaction with an itinerant teacher she used for her son with disabilities while she was living in France. She begins the article by stating that in France, the "the society in general isn't friendly to the disabled. In our area of Paris alone, there are 300 special needs children on a waiting list for a place in a school." She then goes on to state the following.
As she (the teacher) was leaving our house after a therapy session, she advised us to apply to a couple of schools that are specifically for children with Down syndrome, even though Michael does not have Down. Then she made the shocking statement, "Schools for Down children are starting to take children with other syndromes since Down is becoming so rare," she said. "Now that tests can tell so early in pregnancy that a baby has Down, few people are choosing to have them."

Amazing when our choices come home to roost. A world without people with down syndrome. I know a lot of people with that particular syndrome, and I pray that people like them will always be in the world. They are some of the kindest, most friendly people you could ever want to meet. But our world misunderstands who they are and in the name of "quality of life" chooses abortion. They are comparatively easy to be rid of as well. Not to say that abortion is easy, but the diagnoses which have become routine make an unborn child with down syndrome easy to identify.

And doctors are telling us that they should just be aborted or at least offering tests for down syndrome should the conditions be right (they are required by law to do so!) and another pregnancy attempted. Other groups who I refuse to even mention in this blog talk about choice in pregnancy. All I can say is this is evil. Can I be more blunt than to label the complete obliteration of persons with down syndrome from the world as nothing less than evil. One need only read about the history of doctor recommendations in relation to institutions for persons with mental retardation to recognize that they can be not only wrong, but contributors to outcomes which reflect the very worst that man is capable of.

As a medical student (I later flunked out of medical school) I took a class in genetics. The genetics professor was giving a lecture on down syndrome, as it is caused by having 3 copies of chromosome 21 instead of the typical 2 copies. In the discussion, he made the statement, "It is important to remember that people with down syndrome are people." For a moment I rejoiced at his statement. But then he followed it up with, "And some of them may actually develop a personality." One of the greatest things about persons with down syndrome is their wonderful personalities. I wondered how many people this guy actually knew with down syndrome to be able to make such a rediculous statement. But these are the kinds of people who are making recommendations to families about down syndrome in terms of prevention and abortion. These are the people who are delivering the diagnosis to parents and families with a total lack of understanding of who these individuals are.

I can criticize doctors and I can criticize the French (that actually seems to be in vogue now) but I wonder where the church is in all this. What is the church's position on down syndrome, for example? Would most pastors even know what it was, or the effects it has on individuals, or what to say to families who had a child with down syndrome born to them?

I wonder if the church in its attitudes towards persons with disability and its lack of knowledge about persons with disability may actually support a position of aborting children with down syndrome, or at least a position that the abortion of a disabled child is somewhat more understandable, or less worthy of condemnation than the abortion of any other child.

As sad as I was to see the piece in Christianity Today because of the story it told, I was also happy to think that maybe stories such as the one told by Ms. Beise would be another step in waking the church to its responsibility towards all of humanity.

The abortion of children with down syndrome is nothing more than a new form of eugenics. Perhaps we are not out to purify the human race, at least not overtly, but the systematic abortion of a particular group of people, people who are lovely people generally, because we don't understand them, or have no experience with them, or project some feelings we might have about what their lives might be like on them, all of which are misinformed is evil and wrong. It is time for the church to rise up in defense of these individuals. The church should be providing counseling about what down syndrome is, and include persons with down syndrome routinely in the congregation. Church people should be at the beside at the birth of a child with down syndrome and begin their interactions by saying, "Children with down syndrome are a gift from God! Bring them to us, we will love them and their families."


Tuesday, July 05, 2005

"Bring them to me"

Bring them to me

That is reported as Mother Theresa's response to those who would abort their babies. That is, have the baby and she would take the responsibility for caring for those children who escaped abortion.

Those should also be the words of the Christian church in response to a wide variety of disenfranchised people, but in particular, persons with disabilities. Bring them to us, bring them to church. You know, it is one thing to be against abortion, or mistreatment of people for whatever reason. It is quite another to want to offer solutions to problems, particularly when they involve a committment of time on your behalf. A ministry to persons with mental retardation provides "teeth" to arguments which would support the lives of persons with disabilities. One could never accuse Mother Theresa of just being against abortion. She was against abortion with a solution in hand.

As Christians, we need to do much better in supporting our rhetoric, or maybe I should say in supporting Jesus' rhetoric. As I related in the April 20, 2005 entry from Kierkegaard, "Yes, it is even dreadful to be alone with the New Testament." Particularly if you are endeavoring to follow it in what it teaches. Such an effort first requires that you take the time to find out what it says, and second that you do what it says. Neither of these are particularly easy.

But if we claim to be following Christ, there should at least be evidences that we are making the effort to understand what He said and making the effort to do what He has told us to do. What might those evidences look like?

It might begin with more clarity about what the scriptures say about disability. I am completing a survey of church members from a variety of denominations about disability, and if one thing comes through it is the confusion about who persons with disabilities are. To me this is a reflection of the confusion in the leadership about who persons with disabilities are. Christian leaders need to rise up and take on understanding disability and sharing that theological understanding with others in leadership and with their own congregations. In spite of the presence of persons with disabilities in the community, the presence of persons with disabilities in the scriptures, there is surprisingly little theological writing to guide an understanding of who these folks are from a theological perspective.

Then, because we don't know who they are, we don't know what to do to serve them. At least Mother Theresa had a notion of who a baby is and what her or his needs would be. We don't know who persons with disability are or what their needs are. Sometimes I hear young adults talk about babies as if they are from another planet or something. They speak as if they would be totally unprepared to deal with a baby should they have one. Their speech reminds me of those who are unprepared to deal with a person with a disability. In the same way that a baby being born into a family is totally natural, in the same way, the enfolding of a person with disability into a church should be natural. Interestingly, you will find that those young adults generally do pretty well with their new baby when it comes. The church would do well to.

So I would say to parents of persons with disability, "Bring them to me (the church)" and let us prove our rhetoric with some action.