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