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.

McNair

"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."

McNair

"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.

(fcbu)
McNair

The State Boys Rebellion

I just finished reading a really good book. It is called The State Boys Rebellion: A True Story, by Michel D'Antonio. I have long been a student of state institutions for persons with mental retardation, their beginning, gradual change over time, and their ultimate closing. During that time they went from being representative of the best man could hope for to places of abuse and even horror.

The book does a good job paralleling both the perspective of an inmate in the Fernald State School (which for those in the know, is the place about which Burton Blatt wrote and Fred Kaplan took pictures in the famous book Christmas in Purgatory), with events happening at the same time in the US related to ideas of disability, civil rights, etc.

The story probably came to light in response to the scandal about the "science club" at Fernald where young boys were given oatmeal laced with radiation to test its effects. But the desire of the main character of the story, Fred Boyce, is not so much to tell about the science club, but rather to expose the conditions which were allowed at the institution. Conditions which unfortunately were not uncommon.

So I would recommend the book to get an insight into what we as Americans are capable of if the conditions are as they were in the institutions.

(fcbu)
McNair

John 5

The pastor of my church, Dr. Gary Inrig, gave the most interesting sermon this past Sunday. He preached from the book of John, chapter 5. He had many great insights which I am sure I will write about at other times in this blog (I immediately bought a CD of his sermon), however, one insight he had was the setting for the miracle which is described in the beginning of the chapter. He talked about how the city of Jerusalem would be packed out because fo the feast of the Jews, which meant that the area around the Bethesda pool would likely be more crowded than usual. He related that the physically disabled individuals in addition to perhaps not having the greatest hygiene in the first place, would more likely than not be surrounded by their own excrement and urine. No doubt a setting which would be a real affront to the senses. But the amazing thing was that Jesus was there, in the midst of the poor, the suffering and the filth which had to have been in the setting. The passage is not entirely clear why he was there, or whether he went to the pool directly as his destination. Jesus does notice the man whom he eventually heals, who for some reason caught his eye. He had been disabled for 38 years, the passage says. Jesus also approaches him with an interesting question, "Do you want to get better?" he basically asks, but that is for another blog entry.

Imagine, the Son of God, the Savior of us all, goes to a place of misery and filth and hopelessness and superstition, and heals an ungrateful man in the midst of it all.

Kind of reminds me of what he has done to me, although my misery and filth and hopelessness and superstition and ungratefulness is well hidden, at times even from me.

We serve an amazing God. Oh, that I could be more like him in ministering to those most forsaken and most helpless. Those whose last thread of hope is a superstition. Those who desperately need my help yet will be ungrateful and even try to cause me problems for my trouble in helping them (as the man does in reporting Jesus to the "Jews."

The standard set by our Lord for our service is exceedingly high (or low). We are to have his mind in us. He emptied himself and took the form of a servant. He was equal with God, but didn't consider his equality a thing to be "grasped." I sit and shake my head in amazement.

McNair

Membership

As I mentioned in the last post, I am working on an instructor's manual for an excellent text on special education. One of the themes which comes through over and over in this text, is that there is a dramatic need for community integration of persons with severe disabilities. Professionals seek integration in any way then find it. For example, I was surprised as the low lever of "membership" described in the text. So, classroom membership is evidenced by a name of a child with disability on the classroom roster, or school membership by that same child wearing school colors. That is hardly membership as I would define it. But then I wondered even at that level, what percentage of the persons with mental retardation, particularly adults, would be listed on a church's roster? Even that low level of membership would be a step in the right direction.

At my church, we facilitated all of the adults with severe disabilities having their picure in the church directory. For some, it was the first professional picture they had ever had made. Each received a free 8x10 in addition to appearing in the directory which was a huge treat for them. So much more needs to be done in my church (and done by me for that matter) but I was pleased to see even that level of membership.

But membership means much more to me than a name on a roster or even a picture in a pictorial directory. It implies relationships, and caring, and finding out about another's life situation, and making even the most minimal effort. I would like to think that if my wife and I didn't show up in church for a couple of weeks or a month, that someone would wonder where we were. To me that is membership: being known and potentially being missed. Hopefully the same type of awarness and relationships will begin to occur for adults with disabilities.

McNair

Beards and Pipes

I was provided with the opportunity to write an instructor's manual for perhaps the premier textbook in moderate to severe disabilities, Martha Snell and Fredda Brown's Instruction of Students with Severe Disabilities. In the edited text, there is a chapter on the "Promise of Adulthood" by Dianne and Philip Ferguson, well known experts in the field of special education who are not only professors of special ed, they are parents of an adult son with disabilities.

Anyway, in their chapter they tell the following story.

"We remember working in a large state institution for people with severe disabilities some 25 years ago. This institution closed in June 1998, but at the time, a number of people who worked there had apparently gotten only part of the message about treating people as adults. As a result, over a period of months, all the adult men on the ward grew beards and smoked pipes. Nothing else changed in their lives to encourage their personal autonomy, much less their membership in the community. The beards and pipes were simply empty symbols of adulthood that had no grounding in the daily lives of indignity and isolation that the men continued to lead."

This quote made me think of experiences I have had at church. I remember giving a talk about poverty to a group of adults with mental disabilities and a homeless man. I had an inkling of what it was like to be living in poverty from some of my life experiences, however, many of the members of my audience were living in poverty on a daily basis and had been for years.

I guess the point is, I can think that I am doing something which reflects a change in my perspective, a change in my understanding of something, but is what I am doing really reflect a growth of understanding or only that I have so much further to go. When I go to church I hear people talking about God's love, and caring for your neighbor, and the widow's mite, and love for the poor, but I don't see a lot of poor people, as least disabled poor people at church. And when they do show up, they are unexpected. It's as if the congregation is taken aback, "We didn't expect to see you here" or even "What are you doing here?"

The men in the institution had beards and pipes but no autonomy, and nothing had really changed. But the people allowing them to smoke and grow their beards probably thought they had reached a new stage of understanding. Our "beards and pipes" in churches are that we speak of care for the poor, or God's love, or that we are all equal in God's sight, yet there are a lot of people who might be equal to me in God's sight but are never in my line of sight.

Bob Bennett, one of my favorite singers has a song called "The doing of the thing." In talking about helping those in need, he describes how he could, "mistake the very song I sing for the doing of the thing." What do we in churches mistake for the "doing of the thing?"

The retarded people have beards and pipes. Thats great.

McNair

A theology of disability

In 1965, Robert Perske presentated a paper to a conference entitled "The Church and the Mentally Retarted." The title of his paper was, "An attempt to find an adequate theological view of mental retardation." He discusses "a history of how we have dealt with mental retardation in America" as a kind of a backdrop to the theology which might have been developing at the same time. He discusses periods of "total rejection . . . found early in American society" followed by attitudes about "bad blood and sins of the fathers." From there we proceeded to the feeling of "God's special children with the publication of the books "Angel Unaware" and "Retarded Children: God's Children."

He then says we came to the point where we sought a "special theology." He says, "This is probably the first period in American history that pastors have sincerely sought an adequate theology for the mentally retarded." Ultimately he says, "A special theology may not be adequate . . . the theological view we seek cannot be a special view." He suggests, "Therefore our task should be to enlarge the existing general theological views so that they include the mentally retarded. If we sincerely see the mentally retarded as human beings, we sould struggle to broaden and strengthen our general theological views to encompass people with other deficits as well."

I am unsure that we have actually passed the point of wanting a "special theology." If normalization means treating people as normally as possible, perhaps a once size fits all theology would be sufficient. But one size never fits all, and although we are all humans our experiences are different.

Answers.com defines social construction in the following manner

A social construction, or social construct, according to the school of social constructionism, is an idea which may appear to be natural and obvious to those who accept it, but in reality is an invention or artifact of a particular culture or society. The implication is that social constructs are human choices rather than laws of God or nature.

If a theology of mental retardation would in some way flesh out a God perspective on disability, then perhaps we do need such a theology in order to counter the "invention or artifact" of nearly all cultures about who persons with mental retardaton are. These perceptions are built into us, and become as close to us as intuition or consicence. Clearly cultures see peopel with disability as something different. The church appears to see them as something different. So although we say we are all the same in God's eyes, it seems we have adopted a cultural perspective on disability, as a church, rather than what might be called a theological perspective on disability.

One of my quests has been to try to understand disability from God's perspective to the extent I am able. The main reason is to be able to somehow take off the social constructions which are like blinders on my eyes, making me look in a particular direction, and instead see the truth, the truth about "disability" from a God, or theological perspective.

McNair

Audacity article

Please check out an opinion piece I wrote for Audacity magizine at the following website.

http://audacitymagazine.com/audacity.php?op=article&y=grfx&v=&i=26&a=322

McNair

The Best and the Worst

It is interesting, that whenever someone wants to make the harshest criticism possible, they compare the behavior of an individual, or a group or a nation to that of Nazi Germany. We can hardly imagine a worse situation then what went on there. It was horrific for so many people representing many different characteristics which were deemed negative by the evil ones in charge. It was the same for persons with disabilities at that time.

We might also think about the worst of times in our own nation (America) with conditions in institutions for persons with disabilities. But as inhumane as those conditions were, they still don't compare with the life taking that occurred under the Nazi regime.

But then, I wonder what I would use for comparison for the absolute best the world has had to offer over the centuries, particularly for persons with disabilities. What might we point to and say, "This is how it should be, this would be the best situation." In considering the world's best, I wonder whether there would be any mention of programs or services, or attitudes, or sacrifice by the church who follow the teachings of Jesus Christ? Would that we could point to our times, have people remember how the birth of love and caring for persons with disabilities really began to happen in the early 2000's. Would that future people would say, "The enfolding of persons into the church that we enjoy today, started then and caught on in the community. It was that caring by the church which shamed the secularists, or at best chided them into being all they could be to persons with disability."

We have plenty examples of the worst. How about we become the example of the absolute best that the world has to offer. The absolute best!

McNair

Ezekiel 34 Part 2

Lets continue to consider Ezekiel 34 for a moment. It continues on, saying,

Therefore this is what the Sovereign Lord says to them: See, I myself will judge between the fat sheep and the lean sheep.

You know, a significant number of persons with mental retardation are "lean sheep" in that they live in poverty, often on fixed incomes. They are poor.

Because you shove with flank and shoulder, butting all the weak sheep with your horns until you have driven them away.

I think there have been times when the fat sheep have shoved the lean ones away. Maybe not with shoulder and flank, but with words and attitudes for sure. With the power they excercise over all the sheep. They shove out by saying that such ministry is not a priority, or that they haven't the money to do such ministry or bring them in. In these ways they give a more holy face to their actions which shove out.

I will save my flock and they will no longer be plundered. I will judge between one sheep and another.

Should God judge between the poor with limited resources and the rich with great resources, how do you think the rich will fare? Will God say that the poor and disabled were not a priority for Him either?

If the church was doing what it should, then

They will live in safety, and no one will make them afraid.
I will provide for them a land renowned for its crops, and they will no longer be victims of famine in the land or bear the scorn of the nations.
Then they will know that I, the Lord their God am with them and that they, the house of Israel are my people, declares the Sovereign Lord.

I think it poignant the way this passage ends. I am not sure what the actual meaning of the last line is, but as stated it is a simple yet jarring statement. The implication is that you might not have recognized the obvious fact of the statement.

You my sheep, the sheep of my pasture, are people and I am your God, declares the Sovereign Lord.

The group we are talking about, are not sheep or something other than people. They are people, the Sovereign Lord declares. People are always a priority, or at least should be. In the Christian faith, if they are not, then what is being evidenced is not the Christian faith.

McNair

Ezekiel 34 Part 1

Lets dance with a few sections of this passage, thinking about the church as the shepherds and persons with disability as the flock. I have pulled a few of the sections of Ezekial 34 out because of their particular applicability.

Woe to the shepherds of Israel who only take care of themselves!
Should not shepherds take care of the flock?

I think the implication is that some sheep were taken care of and some were not. Apparently the shepherds took care of themselves and their families, however, there was a group of people who were ignored. Who were they specifically?

You have not strengthened the weak or healed the sick or bound up the injured.
You have not brought back the strays or searched for the lost.
You have ruled them harshly and brutally.

The weak sick and injured were not strengthened, or healed or bound up. Additionally, they didn't bring back the strays (it seems the assumption is that they knew where the strays were) or search for the lost. Once again, it seems the assumption is that they knew they were lost. Instead, what did they do? They ruled them harshly and brutally. Now I don't know about brutality of the church persons with disability, but I have experienced and read about some harsh treatment on the part of the church towards persons with disability. Examples of that treatment are provided elsewhere in this blog.

So they were scattered because there was no shepherd, and when they were scattered they became food for all the wild animals.

Persons with disability often live at or below the poverty line. When you are poor, you live where other poor people live. There are many nere do well people who live among the poor and like wild animals they take advantage of the poor, particularly the mentally disabled poor. But why were they scattered? Because there was no shepherd. You don't know how often I hear church leaders excuse themselves from responsibility for persons with disability because of the their lack of funds. There are funds for other programs, oftentimes for programs for people who are not scattered or weak or sick or injured.

My sheep wandered over the mountains and on every high hill.
They were scattered over the whole earth, and no one searched or looked for them.

I was floored to find out that 20% of the population of the United States are disabled. Not all are cognitively disabled, but disabled nontheless. Why isn't the church looking for these people to bring them in. One could take the idea of being scattered as being lost, but one could also take it as that they are everywhere. They are on every high hill. But no one is looking for them.

More on the rest of this section in part 2.

McNair



"Therefore this is what the Sovereign Lord says to them: See, I myself will judge between the fat sheep and the lean sheep. Because you shove with flank and shoulder, butting all the weak sheep with your horns until you have driven them away. I will save my flock and they will no longer be plundered. I will judge between one sheep and another. I will place over them one shepherd, my servant David, and he will tend them: he will tend them and be their shepherd. I the Lord will be their God, and my servant David will be prince among them. I the Lord have spoken.

They will live in safety, and no one will make them afraid.
I will provide for them a land renowned for its crops, and they will no longer be victims of famine in the land or bear the scorn of the nations.
Then they will know that I, the Lord their God am with them and that they, the house of Israel are my people, declares the Sovereign Lord.
You my sheep, the sheep of my pasture, are people and I am your God, declares the Sovereign Lord."

Ezekiel 34

A student of mine, Ms. Kimberly DeHuff shared a verse she had noticed in the book of Ezekiel. She encouraged me to read it with persons with disability in mind. It is really powerful. I provide it here fyi, and will try to unpack it a bit over the next few blogs.

Ezekiel 34
The word of the Lord came to me: "Son of man, prophesy against the shepherds of Israel; prophesy and say to them: 'This is what the Sovereign Lord says: Woe to the shepherds of Israel who only take care of themselves! Should not shepherds take care of the flock?
You eat the curds, clothes yourselves with the wool and slaughter the choice animals, but you do not take care of the flock. You have not strengthened the weak or healed the sick or bound up the injured. You have not brought back the strays or searched for the lost.
You have ruled them harshly and brutally. So they were scattered because there was no shepherd, and when they were scattered they became food for all the wild animals. My sheep wandered over the mountains and on every high hill. They were scattered over the whole earth, and no one searched or looked for them.

"Therefore, you shepherds, hear the word of the Lord: As surely as I live, declares the Sovereign Lord, because my flock lacks a shepherd and so has been plundered and has become food for all the wild animals, and because my shepherds did not search for my flock but cared for themselves rather than my flock, therefore, O shepherds, hear the word of the Lord: This is what the Sovereign Lord says: I am against the shepherds and will hold them accountable for my flock. I will remove them from tending the flock so that the shepherds can no longer feed themselves. I will rescue my flock from their mouths, and it will no longer be food for them.

"For this is what the Sovereign Lord says: I myself will search for my sheep and look after them. As a shepherd looks after his scattered flock when he is with them, so will I look after my sheep. I will rescue them from all the places where they were scattered on a day of clouds and darkness. I will bring them out from the nations and gather them from the countries and I will bring them into their own land. I will pasture them on the mountains of Israel, in the ravines and tend them in the good pasture, and the mountain heights of Israel will be their grazing land. There they will lie down in a rich pasture on the mountains of Israel. I myself will tend my sheep and have them lie down, declares the Sovereign Lord. I will search for the lost and bring back the strays. I will bind up the injured and strengthen the weak, but the sleek and the strong I will destroy. I will shepherd the flock with justice.

"As for you, my flock, this is what the Sovereign Lord says: I will judge between one sheep and another and between rams and goats. Is it not enough for you to feed on the good pasture? Must you also trample the rest of your pasture with your feet? Is it not enough for you to drink clear water? Must you also muddy the rest with your feet? Must my flock feed on what you have trampled and drink what you have muddied with your feet?

"Therefore this is what the Sovereign Lord says to them: See, I myself will judge between the fat sheep and the lean sheep. Because you shove with flank and shoulder, butting all the weak sheep with your horns until you have driven them away. I will save my flock and they will no longer be plundered. I will judge between one sheep and another. I will place over them one shepherd, my servant David, and he will tend them: he will tend them and be their shepherd. I the Lord will be their God, and my servant David will be prince among them. I the Lord have spoken.

"I will make a covenant of peace with them and rid the land of wild beasts so that they may live in the desert and sleep in the forests in safety. I will bless them and the places surrounding my hill. I will send down showers in season: there will be showers of blessing. The trees of the field will yield their fruit and the ground will yield its crops; the people will be secure in their land. They will know that I am the Lord, when I break the bars of their yoke and rescue them from the hands of those who enslaved them. They will no longer be plundered by the nations, nor will wild animals devour them. They will live in safety, and no one will make them afraid. I will provide for them a land renowned for its crops, and they will no longer be victims of famine in the land or bear the scorn of the nations. Then they will know that I, the Lord their God am with them and that they, the house of Israel are my people, declares the Sovereign Lord. You my sheep, the sheep of my pasture, are people and I am your God, declares the Sovereign Lord."

Very powerful to think of the shepherds as we in the church, whether we be in leadership or not, and the sheep being those who are disabled or disenfranchised.

McNair

Not really a new way to discriminate

Last night we had another meeting in Redlands Ca. relating to a group home for medically fragile, developmentally disabled adults. A group of neighbors to the future home were there and they claimed their major cause for concern was that the group home developer represented himself as adhering to the homeowners association agreement, and then changed the home by putting doors on the sides of the house so the wheelchair bound residents could exit the building in case of fire. They were appalled that he would be dishonest in this manner.

Now I agree that he may have done this, not be entirely honest. He may have signed the homeowners' agreement with the full knowledge that he was going to make alterations to the home, and that was not entirely truthful. But I also sat there amazed at the people who were using this argument to discriminate against persons with developmental disabilities. They spoke of property values going down, and how the neighborhood would be devalued, of how their children would be unsafe and how the house would be poorly kept all due to the placement of the home in the community. They even had the nerve to ask whether people would be "peeing in their bushes."

As a boy, I grew up in a predominantly white neighborhood of Southern New Jersey. There were very few African Americans or Hispanics, or other persons who weren't white who lived in my neighborhood. I can clearly recall hearing adults talk about how the property values would go down, how the homes would not be properly cared for, how they feared for their children should anyone other than a white person fill any vacant house in the neighborhood. I can even remember people speaking about an unwritten agreement that homes would not be sold to anyone other than a white person. This is correctly referred to as bigotry or racism.

Yet, although there were those in the meeting from groups who have experienced significant bigotry and racism, they didn't connect their behavior to that of others who experienced discrimination.

Now imagine I developed a homeowners' association, and somehow we were able to establish a rule about homes that would somehow prohibit persons of ethnicity X from living in the neighborhood. However, a person of ethnicity X wants to live in the neighborhood. In order to live in the neighborhood, the person of ethnicity X comes in and makes the change required for him to live in the neighborhood, and the homeowners' association comes down against him for breaking the homeowners' association's rules. Can you imagine the charges of racism or bigotry? Those charges would be justified, unless the homeowners' association reflected on their rules and said, "We have made a huge mistake. We didn't intend our rules to be discriminatory against group X." If, however, that same homeowners association said, "We don't care, we have a homeowners' association and those are the rules," we would begin to wonder about their motives.

Well, the homes in question do not allow for particular types of modifications. In this case, the doors which were added to the sides of the house, to allow for the exit of the wheelchair bound residents were against the homeowners' rules. So in effect, persons having the types of disabilities of those who will live in the group home are excluded from the neighborhood. It was countered that the backside of the house is wheelchair accessible. The association rules indicated, however, that no ramps were permitted to be added to the front of the house. As one person commented, "If I am going to spend 500K for a home, I'm going in the front door."

Can you see how this is a civil rights issue? I can write seemingly innocuous rules, which are largely to protect the aesthetics of the neighborhood, which in reality can be discriminatory against a particular group of people. Not people who want to paint their house purple, but people who want to go into the front door of their house, or be able to get out in case of a fire.

By the way, to my knowledge, there was only one pastor of a church who attended any of the meetings, and he is the parent of a son with a disability.

What ever happened to doing justice?

McNair

A hero's perspective

I picked up a copy of Beowulf at a used book sale. It is a story I love because of the way it portrays heroism in the face of absolute despair. The Danes of the story, were literally just waiting for Grendel to come and eat them in the most hideous manner. Beowulf, however, comes onto the scene, and well, without giving away the ending, is the hero. In describing Beowulf, the book says the following

"Beowulf was the rare kind of person who makes strength of his own weaknesses. His eyes being poor, he determined to see not just as well as other people, but better than most. He did this by cultivating habits of quickness and concentration that enabled him to be truly seeing where others were only looking. And this matter of the eyes was typical of his whole manner of being. Beowulf had made the best of all he had, putting each imperfection to work in the service of his integrity. Thus, his real strength lay in the balance of his person-which is, perhaps, another way of saying that he was strong because he was good and good because he had the strength to accept things in him that were bad." (from Beowulf A new telling by Robery Nye,1968)

In understanding his weakness, Beowulf determined to be better than most in his area of weakness. Weaknesses can cause us to throw up our hands and give up, or can spur us on to work through those weaknesses. Weaknesses can become excuses, or can cause us to see things in a different way, solve problems in a different way, to the point of out doing those who don't experience our weakness. I think about this with small churches. One of the excuses for not engaging in ministry to persons with disability from small churches is the supposed cost of such ministries, the resources required, etc. Taken to its logical conclusion, small churches are not responsible for ministry until they become big churches. But God calls us to be sheep, not goats, and there are no caviats for the service He requires. Does Jesus anywhere say, you know, when you have sufficient resources, then you can begin to be involved in service. But until then, you don't have to do anything.
Actually, I think that small churches have many advantages over other types and sizes of organizations. Relative to persons with disabilities, I wonder whether they have taken the time to find out what those advantages might be. It is interesting in the literature on employment of persons with disabilities, for example, that small mom and pop work places are often desirable over larger corporations. Why? Because the workers with disabilities become more pivotal to the functioning of the business. They begin to be seen for their strengths, and are relied upon. Larger corporations have the luxury of many employees, and therefore don't need to depend upon individuals quite as much. Small churches, therefore, might hold the greatest potential for integrating persons with disability and really tapping the depths of the gifts they bring.

Beowulf also wanted to be able to see in areas where others were only looking. I live on 5 acres and have a big time gopher problem. That is, until I started trying to see them and shoot them with my .22 rifle (I know, it sounds very red neck, but I am getting pretty good at it and my yard isn't as swiss cheesy as it was). Anyway, I have gotten to where when I look at my yard, I can detect the tiny movements of the gophers, whereas before, it seemed I never saw a gopher, just the hundreds of holes which told me they were there. You can be in a setting, even looking around in that setting and never see the setting. I am delighting in students of mine at California Baptist University, who have been looking at their churches and seeing the absence of persons with disabilities. They are gaining Beowulf's eyes in seeing what others are only looking at. I would argue that they are gaining a glimpse of God's perception of the setting. They are seeing the absence of persons whom He loves.

Finally he worked at putting each imperfection to the service of his integrity. This is an interesting notion, which is actually scriptural. We know of passages where we hear that faith is perfected in weakness, or in Paul quoting God, "My grace is sufficient for you." Do we know how to put our imperfections in the service of our integrity? Do we have even the faintest notion of helping others to put their imperfections in the service of their integrity? I am often impressed by the faith of persons with mental retardation whom I know. They are by all measures, cognitively impaired. Yet they often have what Christ says that I need, the faith of a child. I get hung up on doctrine, and experience. I get confused by my normal intellect. They have the faith of a child. I am not prepared to say that people experience "disability" so that they can put their "imperfections" to the service of their integrity, however, there is that potential, and the church is the perfect agent to facilitate that understanding of disability. But people with disabilities need to be in the church, and we need to be prepared to help them to connect the dots to make sense of their life experience, particularly for those with disabilities acquired later in life.

McNair

The log in my own eye

PRISM ePistle [epistle@esa-online.org] is an emailed newsletter which speaks to social issues of our day, and is related to Evangelicals for Social Responsibility's Prism magazine. The epistle dated Wednesday, April 20, 2005 began with the following "Thought for the day," a quote from Soren Kierkegaard. It caught me off guard with its directness and cut me to the quick.

THOUGHT FOR THE DAY
"The matter is quite simple. The Bible is very easy to understand. But we Christians are a bunch of scheming swindlers. We pretend to be unable to understand it because we know very well that the minute we understand we are obliged to act accordingly. Take any words in the New Testament and forget everything except pledging yourself to act accordingly. My God, you will say, if I do that my whole life will be ruined. Herein lies the real place of Christian scholarship. Christian scholarship is the Church's prodigious invention to defend itself against the Bible, to ensure that we can continue to be good Christians without the Bible coming too close. Dreadful it is to fall into the hands of the living God. Yes, it is even dreadful to be alone with the New Testament."
- Soren Kierkegaard, from "Kill the Commentators" in PROVOCATIONS

Wow. I see that sentiment in myself. The New Testament is scary in the demands it makes on a person. Without the forgiveness of Christ it would indeed be "dreadful to be alone with the New Testament." As a man with a family a job and other responsibilities I have chosen, embraced in life, I wonder if I, myself am who I should be. I could easily spend myself, pour myself out like a drink offering. The opportunities to do good, the venues for service, the people I could touch are weighed over against the decisions I make. I think back on the Tolkien reference I made in the last entry:

"They do not perceive the complexity of any given situation in Time, in which an absolute ideal is enmeshed."

I pray that I see the enmeshed ideals in common human interactions.God forbid that I should pretend to be unable to understand or even ignore what I know that I should do, because I know very well that the minute I allow the realization of understanding, that I will be obliged to act accordingly.

I will continue to exhort the church, but as Bob Bennet says in his song, "may the words of my mouth fall to my heart."

McNair

City Council/Group Home

In the city in which I live, Redlands California, there was a city council meeting last night. One aspect of the meeting was a discussion of a group home for medically fragile, developmentally disabled adults which was scheduled to go into a neighborhood in Redlands. It was an interesting barometer of the sentiment of some people towards persons with mental retardation. Kathi and I left there feeling like we had a inkling into what community discrimination on the basis of race might have felt like.

Anyway, one person got up and chided the City Council that when an adult from the group home runs out into the street and gets hit by a car, it will be their fault. Another person dramatically waved at her baby (who perhaps,lucky for her was not disabled, but probably will be as a result of growing up with that mother, at least attitudinally) during her remarks about how it will be dangerous for her daughter if mentally retarded people live in the neighborhood. A man stood up and related how the group home developer had told him not to make eye contact or say hello to the residents because they will not leave you alone. I would hope a group home developer would have better sense than to say something like that which could hardly help but inflame the fears of the persons having homes around the group home. Next a woman spoke up wondering where the churches and religious people of the community were on this issue. That the community needed to be more accepting. A speaker from a state agency spoke about group home regulations, and in some ways added to the irrational fears rather than allying them. A mother of a man with disabilities spoke from her experience and hoped that a man like her son would be accepted by the community.

At that point I was called on and went forward with two of my friends who were adults with developmental disabilities living in group homes. Joyce is a woman with higher cognitive abilities and Josh a man with lower abilities in that area. Joyce told that she worked at Baker's Restaurant and her recent trip to Las Vegas to see Tom Jones, and I described Josh's work at an adult day care center. Anyway, I introduced them, spoke briefly about the fear of the unknown, how when families have a child born to them they are suddenly struck with the discrimination of the community (of which they may have been a part in the past) and expressed my desire to get into the face of the group home developer about his comments regarding not interacting with the adults who would live in the group home. I was reminded of the statistic that says that many adults with developmental disabilities only know one person without disability in the community and many none. No doubt the warnings of people like the group home developer fuel such lonliness. It also made me wonder about the fitness of the developer to have group homes if he was that misinformed about who persons with mental retardation are. I concluded my remarks (3 min) by saying the reason that he probably made the comment about not interacting is that the adults would try to develop a friendship with their community neighbors. At that point, Susan Peppler, the Mayor of Redlands graciously commented that they would be good people (the group home members) to develop a friendship with, or something to that effect. The audience applauded briefly, and Josh became very animated, making the "raise the roof" gesture. The audience loved it and we left.

Obviously the church is not responsible for every societal ill, and cannot cure everything. But I couldn't help but wonder how the discussion might have changed if the church had had a greater presence in the community toward persons with disability. I particularly wondered in a city like Redlands, where there seems to be a church on every corner.

"O man, He has declared to you what is good. And what does Jehovah require of you, but do do justice, and to love mercy, and to walk humbly with your God?" (Micah 6:8)

McNair

We must work the works: John 9:3-5

Nearly a year ago, I related the following in a blog entry:

John 9:3-5 says,
"Neither this man or his parents sinned" said Jesus, "but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of him who sent me. Night is coming when no one can work" (NIV).

Jesus said this in response to his disciples asking about a blind man they encountered, "Who sinned, this man or his parents?" They were wondering who's sin caused the blindness.

Merril C. Tenney, the Bible scholar wrote that this passage might be translated in a different way. Here is Tenney's translation.
"Neither did this man sin, nor his parents" said Jesus. "But that the works of God should be made manifest in him, we must work the works of him that sent me, while it is still day; the night cometh when no man can work."

One of Tenney's points with his translation is that the works of God are made manifest in persons with disability by the things those around them do. The works of God were not made manifest solely through the healing of the man by Jesus. An interesting perspective to consider. An interesting plumb line for evaluating the response of the Church to persons with a variety of disabilities.

This morning, Kathi and I had the pleasure of having coffee with some friends who are parents of a daughter with down syndrome. They related the story of how their daughter will engage in a game of "keep away" with a couple of boys in the neighborhood. Invariably, the game becomes those two boys keeping the ball away from their daughter until the game finally ends. Independent of whether or not the gal with the disability recognizes that she is being taken advantage of in the game, it is obvious that those two boys are not working "the works of him that sent me while it is still day." Now its not that the boys are being particularly evil or something, but they certainly are not being kind to the girl. Working "the works of him that sent me" would probably look a lot less competitive in this case (I have nothing against competition), and reflect, I don't know, fairness, encouragement; evidences of works of God.

People with disability in our midst, provide us the opportunity to work the works of God. Don't hear me wrong. They are not in existence so that I might gain some brownie points with God. That would belittle the importance of their lives and accentuate the importance of my life. I see no evidence from scripture that I am to do either. However, as with the opportunity to help any person who needs it, the chance is provided to work the works of God. At times I will work the works and at other times I will receive the benefit of someone else working the works. The take home lesson, I believe, is that we are all surrounded by opportunities to serve others and we need to take advantage of those opportunities. We are all equal before God.

In response to a letter about his Lord of the Rings, J.R.R. Tolkien penned the following,

Frodo indeed ‘failed’ as a hero, as conceived by simple minds: he did not endure to
the end; he gave in, ratted. I do not say ‘simple minds’ with contempt: they often see with clarity the simple truth and the absolute ideal to which effort must be directed, even if it is unattainable. there weakness, however, is twofold. They do not perceive the complexity of any given situation in Time, in which an absolute ideal is enmeshed. They tend to forget that strange element in the World that we call Pity or Mercy, which is also an absolute requirement in moral judgment (since it is present in the Divine nature). In its highest exercise it belongs to God (emphasis added) (From Carpenter & Tolkien (1981), The Letters of J.R.R. Tolkien, #246, pp. 326)

There is a depth to the situations of my life. I may not be attending to the depth but it is there nonetheless.


McNair

I don't need you

Think about what has been happening in the Schaivo case as it relates to other persons with disability whose lives might be determined unworthy of continuance due to a quality of life determination. Paul wrote,

The eye cannot say to the hand, "I don't need you!" And the head cannot say to the feet, "I don't need you!" On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has combined the members of the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. Now, you are the body of Chirst and each one of you is a part of it (1 Corinthians 12:21-27).

How often in the church, the household of faith, the body of Christ, do we turn to our neighbor and say, "I don't need you!" Our neighbors are defined as people who "seem to be weaker." Interesting caviat. They "seem" to be weaker for whatever reason, however, the Bible indicates that somehow these persons are "indispensable." It would appear to me that they are weaker, justifying my statement, "I don't need you!" but in actuality, they are "indispensable." It also says that the parts that "we think" are "less honorable we treat with special honor." Another caviat in the statement "we think," the implication being that although we think them less honorable, they are to be treated with special honor. God has "given greater honor to the parts that lacked it so there can be" get this, "no division in the body, but that its parts should have equal concern for each other." No division, equal concern. Equal concern about or for what? It would seem equal concern at the most basic level for life.

In the Schaivo case, they have music playing, flowers around her and a stuffed animal in her arm, but they are starving and dehydrating her to death. Is this having "equal concern for each other?" Who are we comforting with these amenities? Supposedly the woman's life is being taken because she is in a persistant vegetative state and would not appreciate such things. Please, if there is any notion that these things are comforting to her, reinsert the tube as she has the ability to appreciate music and beauty!

It occurs to me, that the church has for so long excluded people with disabilities that it has less problem than it perhaps should when a disabled person is starved to death. Or even if it has concern, it seems hollow in light of its lack of effort to include persons with disability prior to the point of life sustaining measures for a brain damaged person. If the church truly has concern for such individuals, why aren't there more brain damaged persons going to church? A pastor friend of mine has said that for a church to have a ministry that includes persons with down syndrome for example (as that is the form of disability most often tested for via amniocentesis in efforts at "prevention" of mental retardation leading to abortion), we give teeth to our arguments against abortion. We say, "Don't abort those children and bring them here, to our church to become a part of our church family, after they are born."

But I don't see as many persons with down syndrome attending church as are represented in the community. Instead, I hear horror stories of churches discriminating against persons with down syndrome and other disabilities and their families.

The church is a part of the problem in this whole issue. Disability has been constructed by the church in such a way that we feel comfortable saying to a disabled person "we don't need you." I look at this incident and am concerned, but I look at what might be the result of 2000 years of the church's lack of concern and am really concerned for what the future may hold.

Would we as Christians even miss, would we even know they were gone, if persons with mental retardation, for example, were systematically starved to death? We see Ms. Schiavo being starved to death and we become greatly concerned about the life of a person with a severe disability. But our track record says that really, as a whole Christian church, we don't seem to give a damn about persons with disability.

Like participants in a liturgy, we stand before the Lord, and tell those with severe disabilities who are not in our midst, "WE DON'T NEED YOU!" That is, until we are confronted with the natural results of our indifference.

McNair
(from cbu)

What to make of current events

I must admit that the recent events regarding taking the life of a severely disabled person concern me. However, it isn't just the events regarding the woman in Florida, it is also the discussion which surrounds her life and the battles of those around her. For example, this morning a bioethicist spoke of how the practice of removing a feeding tube occurred commonly across the country. He specifically referenced it happening to aborted infants who were born alive and children born with down syndrome. If you recall, the starving of children with down syndrome was an issue during the Reagan administration with the whole baby doe affair. I am aghast to think that our medical profession does such things.

Now I recognize that people should have a right to determine whether or not extensive efforts should be made to keep someone alive, particularly someone who has specifically requested that such efforts should not be used. However, feeding someone has now become included in extensive efforts. People are also permitted to make decision about others by caviat, without any documented permission given.

When people have lived life without the experience of the differences referred to as disability, they think they know how they would respond should they at some point experience disability. However, that is like trying to think about what it would be like to be a cat when you have been a dog all of your life. You think you know what you would do as a cat, but you really don't know, and you may find that your will to live as a cat is much more than you ever expected when you were still a dog.

Another concern to me is where these decisions about the life of another will go. If I have a severe disability, do I have a poor quality of life when the quality of life I have is the only one I have ever known? Can I look at a person in desperate poverty and say that they have a poor quality of life? Can I look at a person with down syndrome and say they have a poor quality of life? I have gone out of my way to ask quality of life questions to persons with disability, and almost without fail the response is that they feel they have a good quality of life. I have also at other times in this blog referred to the interview Christopher Nance did with Ray Charles. Nance asked, "What is it like to be blind?" Charles' wise response was, "What is it like to not be blind?" Quality of life is in the eye of the person having the life experience. . .not those observing the person.

We must be very careful about projecting our perspectives of poor life quality on others who may not agree with our point of view, or may agree at one point and not at another. Joni Eareckson relates the story of how she would have said that she wouldn't have wanted to live with the differences she now faces prior to the accident that changed her. However, now having become accustomed to her life, she feels she has a good quality of life.

So, although I don't want to get into people's business when such decisions are on the line, I am very worried that our laws allow for starving another to death on the basis of subjective notions of disability and quality of life. Persons with severe disability are easy targets.

McNair

Bottle necked pastors = layperson movement

I was asked to be on an advisory board for a disability advocacy group. It was interesting as yesterday, I met with the director and their idea is to develop lay people to influence the church. Lay people/leaders to open churches with disability programs. He said that the pastors of the churches can be the "bottle neck" in getting programs into churches for persons with disabilities. Wow.

But, you know, it makes sense that the exclusion of persons with disability has gone on for so long, that it is institutionalized to the point that pastors can be part of the problem. The church structures themselves, theology, leadership, and as a result rank and file members are the problem. I don't think we can rely on seminaries or Christian colleges (at least in their current form) to cause the changes that will result in churches being open to persons with disability. It might actually have to be a lay movement such as the one described by my lunch partner yesterday, that causes changes in the church.

Lets do it!

Interesting stuff to think about.

McNair
(from cbu)

Inclusive worship

I have often wondered about the concept of worship; what it is, how it is done, among other things. Recently questions about who can participate in worship enter my mind. In my church, worship seems very much performance oriented. The band plays loud, and the participation of the congregation is often hardly heard. Then the sermon is given and the expectation is quiet attention.

There are many people who cannot perform with the excellence that performance style worship requires so they would never be able to participate there. Even as audience members they can't sing because they can't read the projected words. They don't even clap in a very timely fashion. They are able to raise their hands and participate in other movements. During worship itself, they at times speak too loud, or ask for assistance in finding a Bible passage, or get up to use the restroom. They don't always look or dress like the rest of the congregation. They also sometimes don't smell like the rest of the congregation. As a result, they have at times been asked to not be a part of the congregation.

But the style of worship in many of todays churches which isso fragile, so excellent that it excludes those who are different belies something about the church. I would argue that if the style of worship is not inclusive of the range of people who would like to be involved in worship, then the style of worship needs to change. I don't recall where in scriptures that social skills are a requirement of worship participation. But I honestly believe that we have excluded persons with disability from the church for so long, that the traditional style of worship has grown to be one that excludes their participation in its very design.

McNair

Patronizing Good Will

Oftentimes when describing work with persons with disabilities, or even in introducing persons with cognitive disability to those without disability, I have the feeling that I am the recipient of a kind of patronizing good will. Whether it is based on some notion of political correctness in relation to the particular enviornment one is in, or a reflection of some general social etiquete of how one is to act or speak when the question of mental retardation arises, people move into this sentimental seriousness about persons with disability. Their speech belies good will of language on their part, but there is also a laziness about it. It's like they reverence the challenges of the families of those persons and what they suspect is the experience of the persons with disabilities themselves, however, they speak out of ignorance; a kind of lazy ignorance at that. Its like the response many special educators joke about that they receive when they say they are special educators. Without fail, others will respond, "You must have a lot of patience." Ask any special educator and he will report that he has heard that response.

It seems when confronted with disability, the general public is often so unfamiliar with persons with disability and their experiences that they respond with the pat answers, the patronizing replies which have been used over and over again. It is good will, but it is patronizing and unreflective of knowledge. But apparently they have heard others use those mindless replies and they appeared to sound heartfelt, kind and maybe even intelligent. So they repeat them as well. And so on and so on. In the end, we have social constructions reflected in the trite language used in response to the unknown of disability.

Now it is obviously better that the mindless responses of the general public should be patronizing good will over something negative, however, oftentimes the pat answers convey negativity which is just below the surface. I use positive speak in public environments about persons with disability, however, in private speak or when challenged to put the positive into practice (drop a group home in the neighborhood, for example) the positive is quickly replaced because the "due diligence" has not been done to actually support the positive.

So when confronted with trite, good speech about persons with disability, ask the questions that will cause the speaker to either back up the speech with actions, or at least go a bit deeper in his understanding of disability.

McNair

Make disability ministry a priority

I am aware of a ministry to adults with developmental disabilities that has been in existence for nearly 40 years. My wife, Kathi, and I were involved in the ministry for 5 years ourselves, nearly 20 years ago. Housed in a large church in Pasadena, California, the forward thinking woman who started the ministry is retiring from it, and as a result, it is at risk of no longer being in existence as no one, including the church leadership, has stepped forward to take her place.

At what point in the life of a ministry will a church embrace and adopt that ministry to the point of investing in it with resources, a pastoral position, etc.?

I wonder whether the ministry at my own church would survive if Kathi and I were no longer involved in it? This question about ministry survival goes to the heart of the church, the priorities of the church and what it is willing to invest in. Nearly any church will have singles ministry, and children's (non disabled children's) ministry, and ministries to singles and seniors. Very often there will also be pastoral positions linked to these ministries. The hiring of a pastor is a statement on behalf of the church that this area of ministry is a given, a priority. Such churches don't expect or depend exclusively on lay volunteers to make such ministries go. They don't wait for a lay person to step forward to make a commitment to the ministry before they will start it. The church leadership (pastors, elders, etc.) have decided that the particular area of ministry is a priority to them and they make it happen.

For example, my own church recently made the decision to commit resources to beginning a "Spanish language" ministry to persons living in the town who are largely Spanish speakers. They invested in buildings, hired staff, including a pastor, and have devoted significant energy to the project.

My question is not to doubt that the "Spanish language" project is worthy, but rather to ask why disability ministry is so often dependent upon lay people, and so infrequently an idea of the church leaders to be pursued as an important area for ministry development to the point of hiring staff to ensure it happens?

Can it actually be that after nearly 40 years of ministry, the Pasadena church will now refuse to support the ministry and ensure that it will continue? I can recall that there were many Sunday mornings where 60 or more developmentally disabled adults would participate in the church's activities. They lived in the apartments and group homes from all around Pasadena. Some folks we picked up, some rode the bus, and some were brought by their care providers. Very few were brought by church members, other than those working in the ministry.

Sometimes I think about going to a church other than the one I have attended for the past 14 years. Not that I am in some way dissatisified with my church. But more I wonder whether the 14 years that Kathi and I have invested in disability ministry there have made any difference in terms of the priority such ministry would have at the church if we were no longer there.

"Its too bad Kathi and Jeff left. We had a pretty good program going
on there for 14 years. Oh well . . ."

Church leaders, YOU should be taking the lead in ministries to persons with disability. YOU should ensure that such ministries are occurring at your church. Maybe put off your building program and hire a pastor to persons with disability instead. Make a statement to the community about the degree to which you are willing to go to serve others, rather than making another edifice to comfortable worship.

Earlier in this blog we discuss the Catholic Bishop statements. Statement number 9 (January 9)says,

"Our pastoral response is to become informed about disabilities and to offer
ongoing support to the family and welcome to the child."

At least the Bishops see the role of their clergy is the development of ministry, if only becoming knowledgeable about disability in order to offer support. It is a good starting point.

McNair

Preparing for acceptance

A light came on for me recently about the role of Christian special educators in the lives of persons with disabilities. As special educators, they are in the business of teaching students a variety of skills. These range from academic to social and other skills which will allow a person to be successful as an adult. But they also have another unique opportunity. They can work to soften the receiving environment, particularly the church, into which Christian children and hopefully others with disabilty will be received.

Those who work with adults, particularly those with developmental disabilities are constantly on the lookout for ways to successfully integrate these adults into the community. An important means for integration which I have advocated is the local church. Christian special educators, therefore, have the opportunity to work to develop skills in their students during the week, and soften the chruch environment persons with disabilities on the weekends. They can work both ends of the spectrum. As teachers, they also have the potential to provide the link to children with or without disabilities in their interactions with parents. They might suggest to parents that they study church programs in the area in order to see if that might be an avenue for the further inclusion of their children with disabilities. Teachers might even use some of the ideas I have written about (for example http://www.jeffmcnair.com/CSRD/localchurch.htm or http://www.jeffmcnair.com/CSRD/networks.htm ) as a way to introduce parents to the importance of networks in helping persons with disabilities to be integrated into the community.

However, in order to have sufficient receiving church networks which reflect the diversity of Christian denominations, it is incumbant on Christian special education teachers to work within their own church to soften it toward persons with disability. How does one soften an environment toward persons with disability? Well, you might start a little class for developmentally disabled adults on Sunday mornings. That's how my wife Kathi and I started at our church. Or, you might invite a student with disabilities to church and act as her buddy throughout the day as she moves through Sunday school classes or the worship service. Perhaps you ask your pastor if you can start a ministry where a group of people go to a group home once a month to play card games with the adults with disabilities who live there. Over time those folks might find there way to the church itself. I think an important part of changing someone or an organization like the church is keeping the issue in front of them. Over time they become more acclimated and they begin to soften. They see you interacting with a group of people and think, "that doesn't look to difficult" and then they give it a try themselves. Maybe you can even convince a music pastor to allow a person with disaibility who happens to be a good singer to sing before the congregation. Such structured opportunities to stare at the person with disabilties are very helpful in breaking down the stigma of the disability.

My wife and I have had great success in intereviewing adults with mental retardation before university classes that we teach. People who are even in special education teacher training programs say it is a "life changing" experience as they have never had that opportunity before (actually they have never taken the time to have that experience before). These types of interactions change the people who reflect the environment. If enough of the people are changed, the environment changes. A changed environment would be one which would be prepared to accept the students with disabilities that the special education teacher is training.

Without the efforts of special education teachers, case workers, and other Christian professionals working in areas of disability, the Church environment will not change and much of the efforts of special education teachers with their children will be in vain as there is no place in the community where adults with disability can be truly integrated.

So I have come to the point of thinking that a critical part of the work of a Christian special education teacher is to work in the environment of her own church. If we as Christians do the work we should do to prepare the environment, I guarantee that secularists will recognize the change and independent of their personal perspective on religiom, will on some level will have few options other than to send adults with disabilities to us, to the church because of the benefits the adults with disability are receiving: benefits that those who are secularist will be hard pressed to emulate in any environment other than a local church.

McNair (from cbu)

NACSPED Conference

This past Saturday, we held the first conference of NACSPED (the National Association of Christians in Special Education). The conference was held at California Baptist University in Riverside, California and by early reports was quite successful. A solid group of special education teachers, persons involved in ministry to persons with disability and parents attended. I was privileged to deliver the keynote presentation in which I outlined the goals of the organization. We will focus on working with the three groups of people listed above.

Conference presentations by others also highlighted one of the three areas. You are invited to visit http://nacsped.com to get a glimpse of the conference program. Shortly, we hope to have powerpoint presentations from the conference available at the website.

Next year's conference will also be held at California Baptist University, on March 11, 2006. For more information visit the webpage. We hope you will be able to join us next year.

McNair
(fcbu)

Christian social constructions

Are we a reflection of what social constructions say we are? At times we may desire to be a reflection of social constructions, at other times, not. For the Christian, we have been givein this archetype construction of who a person should be in the form of Jesus. Any Christian worth his salt will say that his greatest aspiration is to be like Jesus. The social construction of a "follower of Jesus" is something that was new at the time of Jesus, but has developed over time as Christians continue to grow in their understanding of who Jesus was and is. Douglas (1970) states that social construction theory explains a process whereby a reality is developed through the creation of knowledge. To the Christian, the reality is being a "Christ follower" which is built upon the knowledge which comes from revelation, wisdom and faith. If we truly understand this knowledge, we are able to look upon an individual and have some notion of how that individual lines up with the plumb line of "Christ follower."

There are those who would say that people are much more than a reflection of social constructions, whatever they may be, but for the Christian, the desire is to reflect the social construction in significant ways. For example, Jesus modeled ways in which a person would love his neighbor, love his enemy, and love and worship God. Christians themselves might mimic the ways in which Jesus prayed, by repeating the Lord's Prayer, making it their own. Christians might mimic Jesus' dedication by devoting daily time for prayer, Bible reading and reflection. Christians might also look at specific behaviors and language that Jesus used in reference to a particular life issue he confronted. For example, one might study Jesus' interactions with persons with disability in order to reflect the language and behaviors Jesus used in reference to persons with disability. The example of this interaction provides a knowledge set basic to a social construction of who persons with disability are, what disability is, and what the responsibilities of persons in the world toward both disability and those who have "disabilities." Jesus' life and teachings might be said to be the basis for a Christian social construction of disability.

For Christians, the degree to which they represent this social construction of disability, reflects the degree to which they emulate Jesus in this particular area of life. If they do not represent this social construction in this particular area, they do not represent Jesus. The Christian social construction is prescriptive in a slightly different way than the typical social constructions.
As we are socialized as people, we come to believe particular things about how the world works. Some notions are ingrained in our psyche. Every American child knows to "look both ways before crossing the street" or "don't pet a strange dog." But also built into that psyche deliberately or otherwise are "there but for the grace of God go I" or "don't stare" or "they can't help the way they are" or "they are God's special angels" or "they have a poor quality of life." These perceptions are communicated just as clearly as others although not perhaps as consciously.

For Christians, a whole series of behavioral social constructions are built into members of succeeding generations biologically and spiritually. Much of this "knowledge based reality" is indeed knowledge based. However, much of it is not and when examined shocks the person who had carried such a misperception all of his life.

I once went backpacking with some so-called friends. One of the group put a large rock in my backpack just before our decent down the mountain. Imagine my surprise to find that I had been carrying that rock for 8 miles. Upon recognizing that I had the rock in my pack, I promptly removed it and tossed it aside. We shouldn't press this metaphor too far, however, I was surprised because I had examined the things which found their way into the pack. I was surprised because something had gotten by my observation. In a life immersed in culture, we should not be surprised what notions, what ideas about reality, what social constructions fill our minds. It is only when we sit down and open our packs, when we engage in reflection in the light of what we know about our faith, that we see the incongruity of the rock in the backpack. But to recognize that a rock doesn't belong in a backpack, I need to know what does belong in a backpack. I don't throw out my dry socks, or my matches, but I definitely throw out the rock.

Over the centuries, Christians haven't been examining the contents of their backpacks, as least as they relate to persons with disability. If they had, they would have found that not only were they carrying rocks, they had neglected to pack dry socks and matches. How do we know this? It is because of the prescriptive nature of the Christian social construction of disability which points us to the knowledge which can be gained from studying the revelation of the life of Jesus, the wisdom which can be gained from life among people with "disability" and the understanding of one's own faith, who is invited to faith, and what the requirements of faith are.

Douglas, J.D. (1970). Understanding everyday life. In J.D. Douglas (Ed.), Understanding everyday life: Toward the resonstruciton of sociological knowledge (pp. 3-43). Chicago: Aldine.

McNair

More on "disabled" by design

I appreciated the thoughtful comments posted in reference to the last blog. It is interesting and I also think important to ask whether differences which our society has categorized as "disability" are examples of human variation or the result of "the fall." I will freely admit that I do not entirely understand what the answer is to that question. Observations I have made include those in the previous blog as well as others made at other times in months past in the blog. For example, is aging, and the degradation of the body the result of the fall? Are accidents like the one that caused me to blow out my ACL (anterior cruciate ligament) resulting in the bad knee I continue to have the result of the fall, or was there the possibility that someone could injure themselves to the point of having a bad knee pre fall?

As I said, I really am unsure, however, I am beginning to move in the direction of understanding differences called disabilities as a part of simple variations in the human race. When God says that his creation was "very good" does that mean that all of the human members of the creation were entirely equal in every way? At the very least, we know there were differences between men and women. At what point does a difference become a "disability?" History tells us that the number of persons labeled as disabled increased dramatically with the industrial revolution. That is, people who were within the "normal" range when all they had to do was have a strong back were now thought of as disabled in light of the demands of urban society. So one might ask, to what extent is "disability" a characteristic of an individual and to what extent is "disabilty" a reflection of the environment.

I recently saw the movie Ray about the life of Ray Charles. As I look at that movie, as I consider all that Mr. Charles achieved, I wonder at his "disability." In the range of visual ability, he was on the dark end of the scale, having lost his vision. So he had a severely diminished ability to perceive light. It is also true that he relied on persons in his environment to assist him throughout his life (as do I). But I kind of agree with his mother (as portrayed in the film) when she says something to the effect that "you cannot see, but don't become a cripple." Is the limited ability to see the result of the fall? I would think becoming a "cripple" is definately a result of the fall as it appears to reflect a lack of reliance on God, on oneself, and people. A person who is a "cripple" in the way that Ray Charles' mother implied is reflecting a negativity, a buying of the notion that one is less than created in the image of God. This notion is taught to a person, is pounded into a person by society and is society at its worst.

It has always struck me as ironic that people like me, who are largely within the normal range of ability levels, can look at our sin scarred selves with all the foibles and proclaim that we are created in God's image.

It also haunts me to come back to God's comment "who makes the dumb, or the deaf, or the seeing, or the blind." Does God purposely create "imperfection" or do I need to change my definitions?"

. . . don't know, still working through it.

McNair

"Disabled" by design

And Jehovah said to him, Who has made man's mouth? Or who makes the
dumb, or the deaf, or the seeing, or the blind? Is it not I Jehovah?
(Leviticus 4:11)

Moses tells God that he didn't do the greatest job on his mouth. He says he is "heavy of mouth" and "heavy of tongue." Good description. However, in spite of his qualms, God doesn't relent. God responds with a kind of a rhetorical question put down. God knows Moses' mouth. The reply, however, is much broader when it says "who made man's mouth." To me the implication is that God knows about mouths (being the inventor) not just Moses' mouth, and also knows about the variations within and between mouths. "Who makes the dumb" God goes on to say, implying 1) that he knows of the variation between mouths, and 2) that he made the variations between mouths. That is, God even made the mouths of the dumb, those who cannot speak for whatever reason.

These observations on God's part are not restricted to the mouth, however. He goes on to say, "or the deaf" (i.e. variations in the ear) or the "seeing or the blind" (i.e. variations in the eye). Once again, the implication is that God created the variations we see in human beings, down to what are called disabilities; being unable to speak, unable to hear, or unable to see. One would assume that these variations could also include other types of "disability" including physical and mental differences. After all, sensorineural deafness and blindness imply nerve tissue insults or changes which would include mental retardation.

Taking this type of thinking to its final conclusion, these individuals we call persons with disability, are in reality part of the normal variation within human functioning. To think that God created a person who is unable to speak as a person who is unable to speak changes 1) the way I think about that person, 2) the language I choose to describe the abilities of that person, 3) the notion of who God is.

We will revisit these ideas.

McNair
(fcbu)

An Epiphany?

Epiphany: A spiritual event in which the essence of a given object of
manifestation appears to be the subject, as in a sudden flash of recognition
(The American Heritage Dictionary).

Epiphany? Maybe not. However, I did come to realize something the other day. One would think that the church would represent the comunity in which it finds itself. the church taken as a whole, say all the churches in the City of Redlands, California where I live, should reflect the entire community, but individual churches may not represent the community at all. That is, sadly we have churches which are overwhelmingly white, black, Hispanic or Asian in the ethnicity of the members. We even have churches which separate themselves within the groups. So if I go to a church that is predominatly black, I assume that white people worship somewhere else. If I go to a church that is predominantly Asian, I assume that the Hispanic people worship someplace else. I am used to attending churches which do not represent the community in and of themselves. Why would Christians choose or even want such an option? To me it is disturbing that we as Christians cannot even worship with people of a different ethnicity than ourselves. There is truth to the axiom, that Sunday morning at 11:00 is the most segregated hour of the week. The church will have some explaining to do when it meets its Husband.

However, I guess I assume that there are not very many African American people who attend my church because they go to a different church comprised of mostly African American people. In the same way, the Hispanics attend the Hispanic church, and I guess, the disabled people attend the disabled people church. Perhaps I have the same lack of concern in that I don't worry (or care) about those of a different ethnicity who don't attend my church, as I don't worry about the disabled people.

There are two problems with this assumption. One is that most people with disability do not represent a different culture. They are the same as the rest of us. The other is that there is not a separate church for persons with disability (nor should there be, I believe), so the only option is to include them in the existing churches. I would argue that you should assume that if persons with disability are not in your church, chances are that they aren't anywhere, aren't in any church. Why would your church be any different than any other in this regard?

So all you white, black, Hispanic and Asian churches, if their aren't white, black, Hispanic or Asian persons with disability attending your church, where do you think they are? Chances are they aren't attending any church. Do you care? Even if you do have some persons with disability at your church, do they represent the numbers you might expect in the community? Do you know?

"I tell you the truly, whatever you did not do for one of the least of
these, you did not do for me" (Matthew 25:45)

If you are not doing anything, why would you assume that someone else is?

McNair
(fcbu)

The Phantom of the Opera

This past weekend, my daughter Amy and I went to see "The Phantom of the Opera." We both loved it. I recognize that it is just a story, but there were many aspect of the story which made me think.

The loving character of Christine, the Phantom's love interest, toward him is really interesting. At one point she speaks of how his exterior is not what alarms her, but rather the way his soul has become. We learn from the movie that his soul is what it is largely because of the treatment he received as a child, being put on display and abused. On one level, he is able to overcome the abuse he faced and develops a relationship with her, originally as her "angel of music" and later he attempts to become her lover. She has fallen in love with someone else, and at a critical point in the movie, the Phantom tells her he will kill her love interest if she doesn't abandon him and love him (the Phantom) instead. She chooses to go with the Phantom to save her lover, but prays that God will give her the ability to love him (the Phantom) if she makes the committment to him. After a kiss from her, the Phantom realizes that he loves her, and releases her from the bargain so that she can go with the man she loves. In a remarkable show of love toward the Phantom, she goes back to him and places a ring in his hand, given to her by the man she loves.

This interaction between Christine and the Phantom was a wonderful example of understanding someone who has been devastated by the cruelty of society over a disability. Through her kindness, his love for her grows although he must ultimately let her go. With that in mind, the final scene is particularly poignant.

I have run across persons with disability in my life, who literally hated the church because of the interactions they have had with Christians. Sometimes the church can be even more hurtful than the world, particularly toward those who have a desire to belong to the church. But true love on the part of the church toward those with disability can at times heal the pain of the past. Like the Phantom stewed as he observed the interactions at the opera house, there are those with disability, or family or friends of persons with disability who stew as they stand on the outside. The Phantom wanted to be involved, wanted to be a part of the opera. Ultimately he wrote his own opera, which was a ploy on his part to not only become a part of the opera itself, but to become close to someone on the inside who captured his heart.

I want to be one who captures the heart of persons with disability and causes them to want to come back to the church, or come to it for the first time. I want to be the one who shows the love that softens the heart of the aggrieved; those who have actually experienced cruelty from people like me, Christian or otherwise.

McNair
(fcbu)

March 5, 2005 NACSPED Conference

The National Association of Christians in Special Education (NACSPED) is hosting their first national conference on March 5, 2005 at California Baptist University in Riverside California. This new organization was founded last year, and hopes to

• Bring Christian special educators together
• provide encouragement to Christian special educators
• provide professional development in a Christian context
• work to help the Church and its agents become more open to and accepting of persons with various disabilities

The conference is also be one of the many "That all may worship" conferences held across the country, begun by the National Organization on Disability.

For more information, go to
http://nacsped.com
or
http://jeffmcnair.com

McNair
(fcbu)

Remembering Amar, the man with down syndrome used by suicide bombers

"Down syndrome youth used as suicide bomber" is what the headline said. Apparently this young man, Amar, was a 19 year old Iraqui who was kidnapped rigged with bombs and sent to an area where people were being frisked before entering to vote. One report said he was to go to the checkpoint area, but went half way and then began to walk back toward the terrorists when they detonated the explosives. Another report says that he was "crossing open ground." A relative said, "They must have kidnapped him. He was like a baby. He had nothing to do with the resistance and there was nothing in the house for him to make a bomb. He was a Shiite. Why bomb his own people? He was mindless, but he was mostly happy, laughing and playing with the children in the street. Now his father is inconsolable; his mother cries all the time" (from The Age).

So now the terrorists have reached a new low in using cognitively impaired individuals like Amar to further their murderous agenda. It is one thing for a person to hold to a particular political agenda to the point of sacrificing his life for that agenda. It is another to take the lives of random others in one's self destruction. However, it is the depth of evil to take the life of someone who is oblivious to political maneuverings, oblivious about much of what is going on around him in the world even and sacrifice his life and those of random others.

It is my hope that the Muslim Arab world will see this murder of a man, a man innocent of political affiliation, at the hands of those who speak and act for "god" as the final proof positive that a political movement which would use blameless, naive persons with cognitive disability as the vehicle for murder needs to be removed from the face of the Earth.

I would like to think that Amar somehow figured out what was happening to him, and refused to be used in that manner. Many people like Amar that I have known would have acted with such courage.

McNair
(fcbu)