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

Wednesday, June 30, 2004


As I have related elsewhere in this blog, I used to work at an intermediate care facility for adults (over age 18 at that time) with severe mental retardation among other developmental disabilities. There are two stories I thought I would relate today. One about Bert and the other about Shaquanda.

Bert was a man with severe mental retardation who was confined to a wheelchair as a paraplegic. His upper body was pretty much fine, and he was well able to move around in his chair. He had dark hair and a bit of a long face. I think I connected to him because other than a difference of an hour or so, we were exactly the same age. I sometimes wondered if he might have been born in the same hospital as I. Yet there I was in the budding stages of a career in special education, he in a place he would probably remain for the rest of his days. He had no language to speak of other than saying "Ga-way" all the time.

I met Shaquanda quite by accident. As I roamed the halls of the facility, I would walk past people who appeared to be little more than piles of humanity. They were balled up and contractured. Their disabilities were so severe, the were literally moved from their beds to a mat, then the mat was moved, perhaps, and then back to their beds. They were nonverbal, unable to feed themselves or take care of any other personal needs, largely unable to move. Anyway, one day as I was going about my business at the facility, one of these little blobs of flesh said "Hi!" to me with all the personality she could muster. I immediately stopped. I learned from her that her name was Shaquanda, and from that day forward we spent many hours together having the largely one sided conversations you will often have with persons with severe mental retardation.

Shaquanda was always there looking for someone to take the time to interact with her. She saw the activity around her, but it took a mighty "Hi" from her to gain the attention of those around her. I must admit that although I then tried to interact with others like her, there was no response. I think at times I was probably more of an irritant to those people who had become used to being ignored (assuming they were able to even make that determination).

It took months for me to finally figure out what that one thing was that Bert was constantly repeating. It was literally his only language. His phrase was the words he heard most often in the place he lived to the point that he as a non verbal man was able to repeat them. Sadly, "Ga-way" was "Go away." What words would a person with mental retardation learn from the congregation at your church?


Tuesday, June 29, 2004

Aunt Peg

My Aunt Peg died last night. She had lived a long life, much of it alone as her husband died relatively early on in their marriage and she never had any children. She grew up as a tough kid on the streets of Philadelphia. An orphan, she was taken in by a woman everyone in the family, at least the older ones, spoke of respectfully as Aunt Hattie. She must have been quite a woman herself. A big heart to take in these girls (my grandmother lived with her as well)and the toughness to rasie these girls to become the women they became.

The last few years of my aunt's life were particularly difficult. The loss of independence coming with moving into a Christian retirement home was a severe assault. Her faith was never really something that the family was entirely sure of. I often offered to sneek in a Brandy Alexander (her favorite drink, and I think I was only half joking) but she was worried she would get thrown out if she was found out. But she was a tough pragmatist and realized it was for the best. Ultimately she embraced her new home. Things appeared to be going about as well as they might, when she awoke one morning, at about age 91, totally blind. I don't think functionally she ever really recovered from that. But then, how would one? A younger person would think of the years ahead. A 91 year old thinks of the years remaining, and trying to live them out with some degree of comfort.

I remember visiting her (I live in California, she in New Jersey) several months after the onset of the blindness. She spent a great deal of time crying over the difficulties she was facing. She just kept saying, "What did I do for these things to happen to me?", and "I just wish the Lord would take me," although I am not entirely sure she knew what he would do with her once he had her. During my visit, however, I remember having a discussion with her which I think helped her, and certainly has caused me to stop and think over the intervening months and years. She spoke about how discouraged she was and that there was no purpose anymore to her life. I asked her what her purpose was before she became blind and she went silent. "It seems to me your purpose before you were blind was to try to do what's right, and to acknowledge the Lord in everything. So even though you are now blind, your purpose in life is still the same." I think I helped her a bit because she didn't cry as much during the rest of our visit.

You know the requirements of the Lord for us are pretty much the same independent of who we are mentally, physically, etc. Micah 6:8 says "And what does Jehovah require of you, but to do justice, and to love mercy and to walk humbly with your God?" People with cognitive disabilities are well able to do what Jehovah requires of them. I, however, see them as disabled, devalued, damaged. Yet I myself also struggle to walk humbly.


Sunday, June 27, 2004

Unschooled and ordinary but had been with Jesus

In the book of Acts, the story is told of Peter and John healing a man who was lame. After healing him, they were arrested and went before the various Jewish leaders. The comment is made in Acts, "When they saw the courage of Peter and John and realized that they were unschooled, ordinary men, they were astonished and they took note that these men had been with Jesus." Acts 4:13 (NIV)

Wow, they were unschooled and ordinary men. As I shared this verse yesterday with the group of adults with mental handicaps with whom I work at my church, I was struck with how that verse applied to those in the room. They are all pretty much unschooled and ordinary. At the same time I can say to you that they are mostly very courageous. One fellow, Mark, often tells of the teasing or hassles he receives at work or in the community because of his disability, or because he is a Christian. Typically his response is "You need the Lord" which is followed by further ridicule from his detractor. But I look at Mark and see his courage while recognizing that he is an unschooled and ordinary man . . . or is he?

The verse goes on to say that they "took note that these men had been with Jesus." I see that in many of the Christian adults with developmental disabilities that I interact with. You hang around with them and you realize that many of them have been with Jesus. Not in a physical sense as with Peter or John, but in a sense of being with Jesus through faith.

Call it a lack of social skills leading to the ability to not know better, but the honesty of persons with cognitive disabilities seems courageous to me, and they may not understand many things, but they understand their basic faith, and are unabashed in speaking it.


Thursday, June 24, 2004

Love and trustworthiness

I remember as a 19 year old, some of my earliest interactions with persons with disabilities. As a student at Wheaton College, I became friends with a woman in a Friday evening social group we ran for adults with disabilities named Paula. Paula had down syndrome with the accompanying mental retardation and sweet disposition. She liked to draw pictures with markers.

One day I heard that Paula was in the hospital for headaches. I remember going to the hospital and walking into her room. She gave a friendly greeting and we began a conversation (I don't remember what it was about). I was having a nice visit, when suddenly she began wildly flopping around on the bed. I had seen people have seizures before but this was something different. She was aware and crying as she would flail which isn't something you typically see with a seizure. I got the nurse, and after a minute or so she stopped and lay still again. I stayed and was able to continue the semblance of a largely one sided conversation.

When I left the hospital room I as very angry with God. It wasn't enough that he made this young woman mentally retarded, he also had to give here severe headaches on top of it all? It didn't make any sense.

To those who have faith the resolution I came to will make sense while to those who don't it may seem a cop out. But as I worked through this experience I came away with two characteristics of God that the Bible was crystal clear on and even to this day, I cling to these when I don't understand what I see around me. Those two principles are that God is love and that God is trustworthy. He loves me and he loved Paula and both of us can trust him, even though neither of us was quite sure about it at the time.

In the last few years of my life I have found that Proverbs 3:5 is the piece of wisdom which most encourages me, and gets me through situations when I am struggling. It says, "Trust in the Lord with all your heart, don't lean on your own understanding. In all your ways acknowledge him and he'll make your paths straight."

The growth in my trust in God took a major hit and then made a significant jump in 1975, and has continued to grow to where it is now. In the same way that I was somehow a part of Paula's spiritual journey (through interactions, Bible study, etc.) she through her disability became an important part of mine.


Confession of faith

In efforts to make a determination of whether an individual is or is not a Christian, people will attempt to determine whether or not an individual has made a "confession of faith." Ostensibly, this confession of faith implies that the individual in question has made statements to the effect that, "Jesus is Lord," or "I believe in Jesus," or something the the effect that "Jesus died for my sins." Each of these affirmations are good and proper. One might indeed infer that those who make such claims are Christians. However, one must also be careful about considering this form of confession as the exclusive manner in which a confession might be made, or even the most appropriate form of confession.

When someone makes a verbal confession, the underlying assumption on the part of those "receiving" the confession is that the requisite understanding of the principles underlying the confession are present. However, unless described specifically, the hearer has little idea of what has been the thought process which has led the confessor to his statement?

For example one might say "Jesus is Lord" in the same manner as someone might say "Dachshund is dog." That is, a dachshund is a kind of a dog, or that although a dachshund is a dog, I don't want a dog. One might also say, "I believe in Jesus" in the same manner as one would sway, "I believe in gravity." In this case, Jesus is some individual in the background of history that I believe existed and was by all accounts a good man. One might even say "Jesus died for my sins" without an understanding of what Jesus did, or what my sins are or mean. The point is that verbal confession although useful, should not be considered the exclusive confessional form.

Might one evidence a faith committment without the typical outward croppings of a reasonably described understanding of faith and the accompanying verbal confession? Obviously if one was unable to speak, she could not tell her story, although perhaps she might be able to tell in written fom. Yet, what if one could not relate one's confession in verbal or written form, due to disability, or other circumstantial reasons?

Imagine one having made the "battlefield confession" and then dying as a result of the enemies skill in marksmanship. A confession would have been made, ostensibly to God, to whom it most importantly must be made, but there was no opportunity for others, other people to have heard the confession.

I know an individual who all her life has been somewhat wishy washy in regards to where she stands in relation to Jesus. Neither I or anyone around her have heard her make the basic confession of faith one might consider essential to being a Christian. That is, no one has heard her say, "Jesus is Lord," or "I believe in Jesus." As she approaches the close of her life she is experiencing compounded disability. In addition to the typical pains of old age (particularly of being in one's late nineties) she has had a broken arm, a broken hip and a broken leg, each separate instances over a two year period. Additionally, she woke one morning to find she was completely blind. Because of these disabilities, she is now experiencing the ignominy of limited freedom in a very controlled environment arranged by her care providers. My most recent memories of her include entering her room, with largely blank walls. Only the hospital type of curtains provide some semblance of privacy. Additionally, only the clothes on her back and a tin of peppermints reflect a life which until recently was filled with typical posessions. Interactions with her range from borderline hysteria and paranoia, "You are all trying to make me out to be crazy. No matter what I say, you will turn it around,", to clear, intelligent and engaging discussion, to crawling around on the floor of her room in search of her cane (which due to her disability she couldn't use should she find it).

In the midst of these interactions there are times when she lies on her bed and sobs saying, "God, why are you doing this to me? What have I done that was so wrong that you are doing this to me?"

The question that might be asked, is whether these pleas are a reasoned affirmation of faith? Also, what is a more reasoned affirmation of faith? That of the "reasoned" thinker who says the correct words, or that of the desparate person in their last days of life, calling out to "God," if only with questions. The question of which is the more reasoned is perhaps the wrong question. Perhaps it is better to ask what are indications of a real faith in God? I am glad I am able to leave it in his hands.

McNair (Happy 17th birthday Amy!)

Tuesday, June 22, 2004

The unfulfilled desire to serve

If people in my church have the desire to serve but no opportunities are available, then it is my fault, not theirs. This is too often the case for persons with cognitive disabilities. At times a service niche is found and they serve famously. In an earlier blog I mentioned the man who served communion for many years who worked as a pot scrubber professionally. I have known of people who have served in the nursery, or worked with children of the church. Another man was simply present in a resource room to help when he could, but to also keep an eye on the food and materials there to keep scavengers out.

In most of these cases, the terms of service were suddenly stopped. In the case of the potscrubber, there was a change over in the leadership and he was determined to be no longer mentally competent to provide the service (although he had for many years prior to the change over). In the case of the nursery worker, his goofy interactions with parents about what he thought Jesus' favorite color was, or some other fabrication he came up with caused him to be no longer able to rock babies to sleep in his perfect grandfather lap. Another person left due to the depression he was facing and has not been able to regain his status as an assistant with the children. Another was replaced with a person without disability.

In filling spots where service is needed in local churches, those who fill the spots and those who supervise the filling both have to be aware of the human resouces within a church and be more surgical, more judicious in filling those spots. I will use myself as an example.

I have been contacted on many occasions to serve in a variety of capacities within my church. These opportunities have ranged from drama, to movement, to ushering, to ministry leadership. With each of these opportunities I have to ask myself whether 1) this is the best use of my gifts and 2) are there others who might do this thing whose place I am taking. Now my assumption here is that I am looking for opportunities to serve, not simply providing the above as reasons not to serve. For example I have often turned down opportunities because I recognize that without my service to persons with disabilities at my church, the ministry might be limited and might not grow. So I turn down opportunities at drama and take up opportunities to work with persons with disability. I do that both because my gifts are in the area of disability ministry, and there are others who are able to fill the spots in the other ministries.

All that to say, that there are opportunities for ministry, say taking the offering for example, which persons with cognitive disabilities can do just as well as those without disability. Perhaps those spots should be reserved for individuals with disability. Can you imagine if a team of 8 people with down syndrome came forward to take the offering at a church! Pretty cool. Those individuals without disability who are engaged in service, like taking the offering, might stretch themselves to use more of their talents by perhaps assisting in a ministry like childrens' Sunday school, leading a Bible study, or some other form of ministry. This is not to disdain those who serve via the taking of offering, etc., however, in the economy of opportunities for service, the economy of people willing to serve, human resources must be used judiciously so that as many as possible can have the opportunity to serve. We also must be careful to keep people from "copping out" by only serving in an unchallenging manner.

Of course service is important independent of what it is. If it is really true that in churches 10% of the people do 90% of the work, then that is a symptom of a larger problem. The point here is not to dismiss myself from doing the menial service of a church. Rather it is to do the challenging service of the church and the menial service of the church, but to also look to others to do what they can, to do what is within their ability level in service as well.

The Bible talks about David and his desire to build the temple. God "credited" David for his desire to build the temple even though he didn't permit him to actually build it. Will people with cognitive disabilty only be "credited" by God for their desire to serve, or will we work to provide actual opportunities for them to serve. It may require our speaking up when an opportunity comes to us, saying "I am willing to do this, but have you considered a person with disability for this position? Why don't you ask one of them first, and then I will help if no one is available." It will also require our stretching ourselves to take on the more challenging aspects of service.


Monday, June 21, 2004

Some stories

Once a man who attended our group (we were in Pasadena, CA at the time) used to carry a briefcase to class each week. Among other things in the leatherette case was a baton which he used to lead singing each week. He used to take the public bus back and forth to church. One day after class, I went out with him to wait for the bus to arrive. I noticed that his briefcase had several large bulges in it, so just to make conversation I asked, "What do you have in your briefcase." He pulled out a jar of peanut butter and a can of corn and became somewhat indignant. "You wouldn't believe the people here. They just throw this stuff away!" he replied. "They have trash cans here and just throw it away!" Well, he had been pilfering the barrels (actually trash cans) that were used to collect canned goods for the poor. He qualified, so I told him to go ahead and take something he might see in the barrels in the future.

On another occasion, a woman with down syndrome who was about 55 was in our class. The teacher that day was teaching a session about the notion that God is eternal, a difficult concept for anyone to understand. After referring to the fact that "God is eternal" several times, the disabled woman finally turned to me and said "What is all this God is a turtle business?" I agreed with her that the lesson wasn't very relevant.

Then, we used to have a class member who enjoyed watching Christian television to the point where he learned various Christian phrases used in prayers on the station. Without fail, each week he would volunteer to pray. In a manner he had no doubt seen hundreds of times on tv, he came forward, carefully removed his glasses and struck an austere pose. He then went on to string together a series of random phrases which he had heard on the television. It would go something like this:
"O God and Father of the Lord Jesus Christ
for the forgiveness of our sins
the bounty of your righteousness
through the Holy Spirit
and the love of the Lord Jesus Christ
bring us together today
from the bounty of your righteousness
and the forgiveness of sin
etc. etc.
Other class members were quite impressed.

Finally, another fellow was barely able to speak coherently. He would ask to pray and go forward. As he would pray, the class members in their honesty and desire to understand would be saying "What did he say?" as the prayer went on. So the scene was a man speaking unintelligibly with his eyes closed, while most of the others in the room were saying in loud voices, "What did he say?" I also wondered what he might be saying. He, however, was undaunted. Anyway, sometime later, we taught the class the Lord's Prayer. Imagine my surprise when as I taught the phrases of the prayer, the man with the unintelligible speech would repeat each different phrase in an unintelligible yet consistent manner each time. Actually he had been saying the Lord's Prayer every time he had volunteered to pray, but you might say he was speaking it in a different tongue (or language). A tongue unintelligible to me but not to the Lord.


Wednesday, June 16, 2004

Evil versus normal

Lets consider for a moment that mental retardation is a result of sin, in terms of being a result of the Fall (not parental sin, their own sin, etc.). I recognize that these are huge generalizations, however, what characteristics of persons with mental retardation would be those which would seem the result of "evil" and what would appear to "normal?" Then armed with this information, what is our responsibility?

These are the things about mental retardation which some might consider the result of the Fall, that is apart from what God might have intended for people.
Low intellect resulting in:
-inability to achieve at the same level as those not effected
-poor social skills due to an inability to interpret social behavior, social cues, the perception of others
-limited language ability resulting in limited abilities for speech, understanding, ability to read and in severe situations autism in its various forms.
Physical disabilities of a genetic variety:
-such as organ disorders
-bone and stature problems
-metabolic problems and their potentially devastating results
-potentially forms of cerebral palsy or seizure disorders
Also due to the societal construction of disability:
-effects on the family
-devaluation of the individual with disability
Others might also be imagined.

At the same time, these are things associated with mental retardation which seem antithetical to the Fall:
-viewing life as little children
-a simple yet often very strong faith
-a willingness to serve
-an ability to not see their own situation as abnormal
-the desire to be social and close to people
-acceptance of others irregardless of appearance or intellect
-freely loving of others without pretence or "walls"
-genuine honesty in expressing their feelings
Others might also be imagined here.

In viewing people either with an eye toward changing them or as an advocate, it is important to distinguish between what is normal versus what is evil. In change through education, we must also see the difference between characteristics of individuals and characteristics of groups. If the societal construction of mental retardation is changed, many of the perceived deficits of these persons will not be as relevant as they appear to be now. For example, concerns over quality of life will reflect the necessity to change environments in which persons with mental retardation move at least equally as often as the necessity of changing the persons themselves. Advocates will be less likely to entertain excuses.

I had a conversation with an interesting man the other day who is an expert on administration of faith based programs. He decried the problems of trying to include persons with disabilities in private Christian schools, for example, citing costs (largely) among other issues. To my mind this is an environment that needs to be changed. Christian schools have justified their lack of inclusion of persons with disabilities in their schools over the years on the basis of a lack of money. Although I recognize the pragmatics of the situation, somehow this argument rings hollow with me. Can you even imagine going before the Lord and saying, "Well, we would have served the disabled people if we had had more money." Would a proverbial response from God be, "Hey, no problem. It just wasn't a priority."

This type of exclusion is a direct reflection of who people with mental retardation are perceived to be, what the Church's responsibility toward them is perceived to be, and in the situation who is in need of changes.


Tuesday, June 15, 2004

Do severely cognitively disabled people sin?

During the 1970's there was a dramatic move across the US to close the institutions for persons with mental retardation. Fueled by photographs by Burton Blatt, and video by Geraldo Rivera, the nation became aroused and the clients were exited to smaller facilities. It was at that time (1978) that I worked for about a year at an intermediate care facility in Eastern Pennsylvania called Pine Hill. Pine Hill received many persons who had been residents of Pennhurst, one of the institutions with a deplorable reputation.

The question of sinfulness, or maybe just plain bad behavior, at least the potential for bad behavior became real to me at that place at that time.

I met the first person in my life who was self abusive, and wondered about her. Were the punches, I mean jarring punches, which she delivered to her own face wrong? I wanted her to stop, obviously, but was her behavior wrong or sin?

I remember a fellow who used to dig into his diaper and smear his feces on the wall every morning and I wondered whether that was bad behavior or evil. Judging by the feces in his hair, on his face, in his mouth, he sure seemed to be having a good time. One time he was flipping his hands in the manner that many persons with autism will, and feces flipped off his fingers and onto the staff member who was in charge of working with him (feeding, showering, etc.). I was surprised at the indignancy of the worker, assuming that the man deliberately threw the feces at him.

But the most poignant memory I have is of a woman with severe mental retardation who was being fed on her back because of the severity of her physical disability. On one occasion, while being fed on her back, she choked, sputtered and spit at her case worker, and was verbally punished, and nearly a month later was placed in "solitary" for a couple of days, also for the spitting behavior. To me, she had obviously not done anything wrong. But to her case worker she had been a bad girl, or perhaps a bad woman.

I want to occasionally touch on this issue, that is the intention of behaviors by persons with severe disability in an attempt to understand how behavioral intentionality in these individuals is often characterized, how it might be interpreted, and what implications we might draw about the spiritual condition of persons with severe disability.

More to come.


Thursday, June 10, 2004

Responsibilities versus rights

In our current society, groups are clamoring for various rights. The disabled community is no different. Obviously some rights, such as the right to a public school education, should have been available much before 1979. However, as discussed in Phillip K. Howard's The Death of Common Sense, rights can get out of hand. My friend Dr. Rick Langer says that if you want to empower someone give them responsibilities not rights. As soon as I become dependent upon you everything changes. I will expect more of you, I will value you, I will actually need you to fulfill whatever it is that you are doing.

People with disabilities have long been in the position of being reliant upon those without disability to help them. It is those in the not-yet-disabled community who need a little dose of reality when it comes to dependence. I will admit that one of my biggest problems is recognizing my that my "strength" is an illusion in so many ways, particularly in relation to God. As DC Talk says, "the physical world creates a spiritual haze." It takes an effort on my part to see past myself to my utter dependence upon others.

I am also extremely dependent upon my wife Kathi, my children Josh and Amy, and so many others.

One looks upon someone with disability, particularly a severe physical disability and feels sorry for that person, at times because of their dependence upon others. I should look at such a person as I would look at a reflection in a mirror as that is who that person is. She is a physical example of a physical and spiritual reality. I do well to understand that reality.

But I also do well to empower such people by using their gifts within the church. One of the greatest things I can do as a Christian is to pray. People with severe physical disability, for example, have a tremendous opportunity to serve the church in this way (and others) if we will only value them, and also recognize our dependent situation that our strength is an illusion, and by example, our dependence on prayer.


Wednesday, June 09, 2004

Using "limited" gifts

"As he looked up, Jesus saw the rich putting their gifts into the temple treasury. He also saw a poor widow put in two very small copper coins. 'I tell you the truth,' he said, 'this poor widow has put in more than all the others. All these people gave their gifts out of their wealth; but she out of her poverty put in all she had to live on.'" (NIV)

The obvious analogy here is that persons on fixed incomes, like individuals with disability living on social security are similar to the widow who gave a small amount which was by comparison was a large amount. I have sat in church when persons with severe mental retardation put a dollar in the offering and saved fifty cents for a donut after church, recognizing that these were probably their two financial splurges for the week. You might say that this is less than the 10% tithe the church has adopted, however, it is the heart of these people which impresses me, not the amount of their gift.

But this verse struck me in another way as I read it this morning. "All these people gave their gifts out of their wealth" caused me to think of other gifts that people without disability have. Gifts like intellect, health, physical strength, social skill, community mobility, understanding of things of the Lord. We often hear that 90% of the work of a church is done by 10% of the people. I honestly think that I have yet to ask a person with a cognitive disability to do something for me and for them to refuse. They are quickly willing to spend their "limited resources" due to disability to do just about anything for the church, for others, whatever might be asked. They are certainly not limited in their desire to serve. Perhaps that is why persons with mental retardation are beginning to gain the reputation of being such good workers.

Through programs such as supported employment, employers are beginning to see that once the worker understands what she is to do, she will be reliable and dependable. As stated elsewhere they will treat an entry level job as a career. There is a movie I once saw about a woman with cerebral palsy and mild mental retardation. After years of training she was finally able to get a job as a ticket taker in a movie theater. Her comment upon receiving the job, and being able to hold it for several years was, "To you this might seem like a small thing but to me this is my life."

In Jesus' example of the widow, I think there are at least three take home lessons. One is to celebrate the gifts of those who aren't as gifted. The second is apply her example of sacrafice to ourselves in the way we use all that we have been given. The third is to provide opportunities for those who perhaps aren't as gifted to express their gifts. If your standard for participation is always and only excellence, then only a few will be able to participate. Imagine if the minimal standard for giving in Jesus' time had been a silver coin rather than any gift. The copper coins the widow sacraficed to give would never have been given and therefore never used. Her desire to give to God might have gone ignored. However, if your standard is meeting the desire to give or to serve then all can potentially be involved. If people with cognitive disabilities in my church have the desire to serve but no opportunities are available, then it is my fault, the church's fault not theirs.


Tuesday, June 08, 2004

Expectations of the rank and file

One of the things I have wondered about over the years, is what is the rank and file Christian's responsibility toward persons with disability in the church? There are people like myself who have chosen this area of ministry (or have been guided to this area of ministry) but what of people who have not taken this on as their focus of ministry?

A friend of mine has given his life to cross cultural missions particularly in foreign countries. He once said that if people were truly serious about their faith they would give themselves to this area of ministry. I responded that from my perspective if people were truly serious about their faith they would give themselves to ministry to persons with disability. Obviously we were both wrong. God calls each of us to different areas of ministry. Our role is to find that area and spend ourselves in that area.

However, the idea of the responsibility we each have in foreign missions might help to understand our roles in other areas of ministy. I am by no means the role model for service to the local church, but it helps me to consider what I might expect of others by thinking what God might expect of me, what others expect of me and what I expect of myself relative to ministries developed by the church.
1. I should recognize that the people involved in ministry have somehow experienced a call to that area of ministry. It is therefore a priority for them and I should respect them for responding to that area.
2. I should support their efforts through prayer, financial support as I am able, and perhaps even occasional service.
3. I should take the time to understand their mission, their goals and how I might support them in some way by what I do.

But I also think there is a larger question in disability ministry as the focus of the ministry is present at the church. People go somewhere to do foreign missions. People with disability are regular members within my midst, at my church. What are the rank and file's responsibilities toward these individuals in their midst? It is interesting how passionate people suddenly become about disability when disability visits their family. Obviously one cannot be passionate about everything, and of course I will take a greater interest in diabetes if my father has it, or in India if my daughter is serving in ministry there. But is there some middle ground of interest, support, service that I might engage in even if disability ministry is not the focus of my life?

I have been coming to a growing realization that when I set foot on my church's campus on Sunday mornings, that I am not there for me. Well I am there for me but it is all not about me. Of course there is the worship service which should focus on God, but there are also other interactions with people, and I am not the focus of those interactions. I guess when I buy my donut and coffee I focus on myself (I have become so predictable that the donut lady has my favorite one waiting for me each Sunday!). But when people talk to me, I try to listen. I try to make other's smile with my silliness. I try to teach people with disabilities about the Lord. I try to make others with severe cognitive disabilities feel welcome as they go through their personal church rituals (see May 22). I try to be accepting and encouraging. At times I will take someone out to lunch later in the week or give them a phone call.

I guess these are the kinds of things I should expect of regular church members. As a rule, at least at my church, they are doing a pretty good job.


Sunday, June 06, 2004

People with disabilities need advocates

It's true. People with disabilities need advocates. I never cease to be amazed at the manner in which the agencies who purport to help persons with disabilities sometimes don't help to the the extent they are able, and at times actually can hurt.

I was recently at an individualized education plan (IEP) meeting for a young girl with down syndrome. By law, the education of persons receiving special education is to be individualized partially because these idividuals have demonstrated that have difficulty being successful under the regular curriculum and also because oftentimes very specialized approaches are necessary. Anyway, in this meeting diagnostic information was shared about the girl. The teacher indicated that the student only knew about 10 letters of the alphabet (although at the meeting she wasn't sure which those were) and could barely write her name. However, the objective for the IEP was that the student would remember to place spaces between words when she is copying a paragraph from the blackboard. OK, so the most important thing (among others which made their way into the education plan) was that a girl who didn't know letters would successfully place spaces between words in a copied paragraph. Does this strike you as somewhat silly? Even the parents, two intelligent people, didn't speak up about the objective at the meeting until I spoke up.

In a different situation, an adult woman with mental retardation in the mild to moderate range was living on her own in an apartment with about 3 cats. I know it was three, although my nose told me there had to have been more cats in that apartment. The landlord of the complex decided that pets would no longer be permitted in the complex. Tenants were given 2 monts to get rid of their pets. I recognize that this is difficult, however, that was the rule. The woman I knew insisted that she wouldn't get rid of her cats. When case workers from the state attempted to help her to even discuss the possibility, she became verbally abusive. At that point the case workers no longer attempted to work with the woman to get rid of her cats. This is an evil thing to me as they knew what the logical progression of things would be for that woman. Although she had lived for nearly 10 years on her own, she would be evicted from her apartment. Upon being evicted, she would loose her ability to receive reduced rent from the government. Without the ability to receive reduced rent, she would not be able to afford to live in an apartment. Unable to live in an apartment she would be forced to live in a group home for individuals with much more severe disabilities and much less freedom. In some convoluted kind of way, the woman would be receiving the natural consequences of her choices, even though I am confident she wasn't entirely aware either of her choices or the implications of her choices. The approach of the state agency set her up for failure, she failed (according to them) and as a result she was set back, probably at least 10 years in progressing to the level of independence she had been enjoying.

It takes getting to know persons with disabilities and the system to some extent, however, the church is littered with people like myself who have the knowledge and ability to be an advocate. This is a way in which the church can stand up for social justice for a disenfranchised and disadvantaged group of people. Christian social service workers and teachers, does your service end with your exit from your office or school, or can you work to advocate for those who aren't your clients after hours and at other times, even if it means taking on your own state agency?


Thursday, June 03, 2004

Overcoming a notorious reputation: Roy and me part 2

Well, once again I met Roy and we went off to his 4th grade Sunday School class. His parents were concerned because he had eaten some sweets that morning, which appear to be a trigger for inappropriate behavior. I was happy that he was either resigned to or pleased about the fact that his big, balding, bearded, buddy would be again following him to Sunday school. We walked in, and the sign in sheet wasn't there. Small things such as this can at times be the trigger for children with autism to engage in behavioral problems. Roy took it in stride and went to sit down in his usual spot. I went and sat by him. A young girl with down syndrome sat nearby with her adult woman buddy in tow.

The teacher entered the room and said "There will be lots of chances to win candy today!" I immediately realized that I didn't fulfil my pledge on this blog (see May 17) to have something else available. I got up and scurried around looking for chips or something that Roy could win. Finally I spoke to someone in charge and she came up with the idea of shiny new pencils that they had. I sat down. The sign in sheet arrived and he got up and signed us both in.

We sang some songs, some of which Roy knew, to the point of being willing to go forward and "lead" the songs with other kids. When he would do particular motions to the songs, I did them as well. He began to look to me to mimic his motions. At one point I asked him if he could read the words which were being projected and he said "No." However, he then picked up a flyer about some trip and proceeded to pick out words he knew. He saw the word "ball" in balloon and was pleased to know the whole word. He also loved the phrase "baby wipes" which he read repeatedly to himself with delight.

The leader asked questions and the kids were to jump up, provide the answer and receive a candy. I don't recall the question, but on one of them, Roy was the first one up. He also answered the question correctly! The teacher approached him with the pencils, but he indicated that he wanted a candy. The teacher's assistant came forward and gave him a small candy bar. He took it and put it by a pin wheel he had been carrying. The session continued on and occasionally kids would go forward and exchange their candy for something more desirable. Noticing this, Roy went forward and traded his candy bar for a taffy apple sucker (good trade!). He brought it back and once again set it down. My mind kept telling me that he has problems if he eats sweets, but he hadn't actually eaten the sucker. Finally, the class ended and students were able to chose another candy. Roy went forward and chose a tootsie pop (another good choice) and put it in his pocket with the other sucker. I looked at him somewhat surprised. I guess he could read my mind as he commented, "I am going to a birthday party today and these are for my friend."

As I left him off with his parents I told them about the suckers he had in his pocket half because I wanted them to know he had them so he wouldn't eat them, but more so they could recognize how thoughtful he was to think of someone else in the midst of a situation where I guarantee you the other children (me too for that matter if I had been allowed to stand and win a candy) were thinking of their desire for candy, of themselves.

More to come.


Is learning disability the result of sin?

I want to return to Matthew Phelps article in the Spring 2004 issue of the Christian Scholar's Review. As I reported, last blog, he states,
"More extreme deficits due to diseases or disorders, such as Alzheimer's disease, a hippocampal injury, attention-deficit disorder, or learning disabilities are a result of the Fall according to my view. They are not part of the way things are supposed to be."

The notion of a detectable disability being a part of the fall raises some interesting issues. The history of intelligence testing reveals that prior to the early 1900's learning disabilities were not even recognized. I suspect that people always experienced difficulty with learning, however, the recognition of low IQ did not even occur till about a hundred years ago, with the actual label of "learning disability" being coined by Dr. Samuel Kirk many years later (I had the opportunity to meet Dr. Kirk before his death. He was a interesting insightful man). This recognition also related to the urbanization of society, particularly in America.

In a previous post I noted the fact that an individual with mental retardation who is a friend of mine is not sure whether or not he has a disability (see May 18th) although I see him as disabled. I made the point that that is a problem both for me and for the Church. Seeing someone in a particular way implies a form of stereotyping and the accompanying baggage that goes along with that perception. As much as I might want to be egalitarian, there is a difference in my relationships with persons with cognitive disability and those without. We talk about the same things, often do the same things, but there is still a difference which although it accompanies my perception of disability is not necessarily related to my friends' disabilities.

So, going back to intelligence testing, a point came where a group of people who weren't disabled suddenly were, on the basis of a test of their intelligence. We also find that many of these people really weren't disabled, but were being tested in a language other than their primary language, or using cultural language, metaphor and history with which they were unfamiliar. It seems in these cases, the result of the Fall was the development of the tests not the disability of the persons.

This brings me to my point. If I look at something, and I perceive it as evil or as a result of the Fall or the result of evil, it colors my perception of the reality of that thing I am observing as well as the manner in which I will categorize, describe, interact, etc. with that thing. If disability is often a societal construct (see May 18th again) and not necessarily a negative characteristic of an individual I need to re-evaluate the societal construct, not the individual. A couple of examples.

In Steinbeck's Of Mice and Men, Lenny is a large man with cognitive disability (mental retardation). I particularly loved the movie adaptation of the book (the most recent one) as it displayed Lenny's competence as a worker. When others were struggling to haul bags of grain, he could take two at a time and toss them easily into the wagon. From the employer's perspective who was the better worker? Knowing many workers with mental retardation, I would also add that these individuals rarely complain about their wages, and treat their entry level job as a career.

Then, there was a research study done about social skills and workers with mental retardation. You see the literature indicates that most persons with mental retardation loose their jobs due to minor social skill deficits. The researchers in the Chicago area went to a jobsite where a man with mental retardation was working. They asked the boss and coworkers, "If you could change anything about Joe, what would it be?" They replied that he repeated topics too much at break and other times during the day. Can you even imagine your boss calling you in and saying, "Sorry, we have to let you go because you repeat topics too much." Yet, that can be the criteria to fire workers with disabilities. Anyway, imagine Joe talking about the Cubs or something "too much." Well the researchers measured the amount of times the coworkers repeated topics and used that level as the criterion by which they would measure success for Joe. By the end of the study, Joe was talking about the Cubs no more or no less than the other workers. When the researchers went back and asked the employer and coworkers about how Joe was doing, they replied there was no difference.

Perception is everything. One must first determine where the problem is before one can formulate an intervention to address the problem. Are learning disabilities or mental retardation a result of the Fall? I am not entirely sure. I am less sure than Matthew Phelps about what should be included in the range of normal because I know too many "disabled" people who seem to get more normal the better I know them. However, I am sure that the manner in which persons with learning disabilities, mental retardation or other disabilities are treated by society, including the church, is most definately a result of the Fall.


Tuesday, June 01, 2004

Pre-Fall normal vs. post-Fall normal

In the Spring 2004 issue of the Christian Scholar's Review, Matthew Phelps takes on the notion of memory as it relates to a high or low view of human beings. He states,
"Nevertheless, even if one grants that cognitive limitations are not best characterized as sins, or as moral evil, they still need to be distinguished from general effects of the Fall; that is, from natural evil. Let me first note that my claim that memory limitations are good applies only to those limitations within the normal range of variability in human capacities. More extreme deficits due to diseases or disorders, such as Alzheimer's disease, a hippocampal injury, attention-deficit disorder, or learning disabilities are a result of the Fall according to my view. They are not part of the way things are supposed to be."

In this discussion Phelps is once again largely speaking of variations in memory functions as the limitations or ranges of human functioning. He goes on to say,
"On the other hand, I view normal limitations as part of the way things are supposed to be, rather than as Fall-induced perversions of the mind. If cognitive limitations are not sins, and if they are an original aspect of the created order, then they are more than merely not evil; they are in fact good. They are good because they were created by a good God. They are good because human beings are supposed to be limited."

This immediately begs two questions in my mind. First, what is the range of normal variation. You might counter, "What difference does it make?" I just wonder what level of cognitive functioning, in terms of deficit might be considered within the normal range, and what level is a result of the fall? What range is a part of the created "good." What range is the result of the Fall. Unfortunately we have only two examples of pre-Fall humans. We note variations in sex, and perhaps others one might glean from the Genesis account, however, other aspects of human variation not due to the Fall are hidden if only because of the number of pre-Fall people.

A second question relates to ranges of normal functioning that Jesus as fully man would have experienced. Isaiah 53:2 makes the following prediction about Jesus' coming. "He has no form nor magnificance that we should see him; nor form that we should desire him." This implies that not only was Jesus within the normal range of human appearance, he was in the middle to lower range. He experienced the range of normal in appearance. When you read about the level of beating he sustained, and the way he was able to survive to the cross, it gives the impression he had physical strength perhaps in the higher range of normal in being able to survive physical abuse. His teaching, words, and cleverness in interacting with his detractors give the impression that he was in the high range in terms of intelligence (let alone wisdom). Physiologically and mentally he had a strength in the high range to be able to fast as he did.

Mental retardation is defined as "subaverage general intellectual functioning with accompanying deficits in adaptive behavior." Low IQ typically means 2 standard deviations below the mean. Deficits in adaptive behavior are relatively standard, although for example, some children walk at 1 year and some at 2 years.

So, I wonder what the Fall did to change the criteria of what is normal/good functioning.