April 23, 2007

It has now been three years since the birth of this blog. I have made 256 entries (not as much as I would have thought in three years) and much has happened over the three years.
-We have seen the taking of the life of a person with a severe disability by starvation and dehydration in our own country. We have come to the point where we now call giving someone something to drink and something to eat "medical procedures." We have done that so that we can talk about removing medical procedures from a person. Our language is not to say we are going to "starve this person to death" we say we are "removing medical procedures." That is evil. In the United States of America, a defenseless person can be starved to death and people will argue, "that is what she would have wanted." I know of no one who wants to be starved to death. Perhaps they do not want to be kept alive artificially, but is giving someone food and drink keeping them alive artificially? If so, I and you are being kept alive artificially.
-We have seen a young woman have her growth and development stunted via surgery so that she will be easier to care for. If I were to do this to anyone other than a person with a severe cognitive disability, with mental retardation, I would find myself in jail. But because the person has a severe disability, I can change the rules and do unusual things to the person for my own convenience.
-The Supreme Court of the United States upholds the partial birth abortion ban. If you are unsure of whether or not this is a good thing, you should get a medical textbook and just read a description of the procedure. No politics. No agenda. In response to the stopping of this evil, we have politicians who group the upholding of this ban with the murder of 32 people at Virginia Tech.
-The Joni and Friends organization founded by Joni Eareckson-Tada build and now occupy an international center on disability as a launching point for ministry and programs of inclusion. This is another exciting next step.
-I think we are beginning to see the Christian church moving a bit as it awakens from its slumber over inclusion of persons with disabilities. I hear some pastors speaking about it, and little things are beginning to happen. I could be that three years from now, there is an even greater awareness and response. That is my prayer.

In my own little world...
-My own church will celebrate its second disability awareness Sunday! It should be awesome with participation of people with various disabilities, parents and leaders. My church has made great strides, largely having nothing to do with me, but with people within the church catching the vision and running with it. I has been an interesting and exciting time. But there is still more to do. As we met to plan the service, I said, "This is what this service will look like in 5 years and this is what it will look like in 10 years." Yes we have made great strides but there is so much more to do.
-The National Association of Christians in Special Education conference (NACSPED) was held at Azusa Pacific university and 120 people attended! We hope to have the conference at Azusa again next year, and perhaps in San Diego the following year. Little NACSPED is growing and one of its major goals is that special educators would go to their churches and get them to include people with disabilities. This is very encouraging.
-California Baptist University will be offering an MA in disability studies from a Christian perspective. This is very exciting and quite novel, I believe. We hope to make further announcements about collaborations we are working on in the near future, which will be an incredible blessing should the Lord allow the collaboration.
-Opportunities for writing about persons with disabilities and churches are increasing. This implies to me that there is a growing interest. Even five years ago, there were limited opportunities for such writing.

There is so much more to do, so much further to go, but we are seeing change and growth. God is waking a slumbering church. Be a part of the change.

McNair

A confession

I have a friend named Thom who is a person who has a cognitive disability. You might even say it is a severe disability. I have known Thom for probably 8 years. He comes to my church and I visit his group home. Our interactions have largely revolved around him saying things like,
"I got paid this week. A hundred dollars!"
or
"You know that man on the radio? He sings good!"
or
"I was good this week, will you give me a hundred dollars?" (he means one dollar)

These phrases are repeated over and over and over. My interactions with him over the past years have revolved around him approaching me and repeating one of the above statements. I would respond, hopefully, in a friendly affirming manner, but no doubt distracted manner.

But a couple of weeks ago, I had him visit the campus at Cal Baptist with me. He had my undivided attention for several hours. The result was that I realized how I had never given this friend of mine sufficient time to express himself to me because he never had my undivided attention. I was impressed once again by this last evening when I visited him at his group home. We shared a bag of jelly belly jellybeans and discussed everything from changes in his room, to his friends at work, to clothing he liked to wear, to baseball, to the jellybean flavors we were sampling together. I left the group home in repentence over the fact that I had never given this person whom I referred to as my friend, the time I would have given other friends of mine. I am now committed to working on our friendship, by being the friend to him that he was trying to be to me. His repetitive statements were efforts for me to see him as a person, as a person who wanted to be my friend. However, with his limited intellect he could do little more than repeat phrases that he probably had learned would get a response from me. I enjoyed his statements about his paycheck or the music he listened to, and I often gave him a dollar.

A student of mine shared with me something I had shared with her and my class on many occasions. That is, that the more time you spend with people with mental retardation, the more "normal" they seem to you. The fact of the matter is that they ARE normal, just different than most everyone else who are all the same. It is true that I at times enjoy my friends with mental retardation more than my friends without. It is true that I am growing more impatient with people without disabilities as I grow in friendship with people with cognitive disabilities (probably not a good thing, but reality nonetheless). It is true that Thom seems more "normal" to me because I have been taking the time to talk with him and be with him and really get to know him. Untill I did that, he was always a little crazy. Now I recognize that I am too busy, he is not crazy.

Another friend of mine wondered about when we could get together. I responded I would love to (I really would) but at this particular moment in my life, I am very busy. His response, probably out of frustration with me and others like me was "Busy, busy, busy. Everybody is too busy." He cut me to the quick. I communicate to him how important I think he is by the amount of time I spend with him. It is almost like he is telling me, "I am a person worth getting to know, worth being your friend, worth your time. You are missing out on my friendship."

It is true that I am.

I have danced with the idea of buying a different home with many rooms so that people would be in more of a community together. But I have got to understand that I cannot do it all as much as I might want to. That is why there is a church. In the same manner that my church cannot meet the needs of all the people with disabilities in my region of the country, I cannot meet the needs for friendship of all the people in my community. The church needs to step up and do the simple thing of taking the time to make friends.

May God help us to do so.

McNair
(fcbu)

The servant and devaluing roles

I was thinking again about the training I received in social role valorization (see March 21, 2007 entry). As Christians we are called to be the servant of all. The servant role is, in our society, a devalued role. There is value in being served, not in serving. Serving implies that someone else is "better than me" where being served implies that I am "better than someone else." At least that is what I think our society might say. Politicians like to refer to themselves as public servants, but I think most would agree that is more rhetoric than truth.

Jesus, however, saw things differently. In John 13, he was interested in teaching a lesson to his followers when he washed their feet. "You do not realize now what I am doing, but later you will understand."
Peter understood the ramification of Jesus taking on a devalued role (at least he thought he did) and would have no part of it.
Jesus responded, "Unless I wash you, you have not part with me."

It is amazing, but Jesus forever changed the meaning of washing someone's feet (no doubt, a commmon although devalued role in his time, as once again evidenced by Peter's statement). I suppose in non-Christian societies, it would still be considered demeaning. In Christian societies, it has ever since been associated with servanthood and being like Jesus. The devalued role has now become associated with something beautiful, and it is an example. Jesus even labels is as such "Now that I, your Lord and Teacher, have washed your feet, you also should wash one another's feet. I have set you an example that you should do as I have done for you...Now that you know these things, you will be blessed if you do them."

In our society, serving persons with severe disabilities might be considered a devalued role. Teachers of students with severe disabilities will have the experience of being told by their own families, "Why would you waste your time with those kids?" For that matter why would anyone "waste their time with such people?" If the church would embrace persons with severe disabilities (I mean SEVERE disabilities) we would change the meaning of such service. We would bring it honor in the same way that Jesus did via his example of service. We would be in the honorable position of setting an example such that others should do as we have done for others. So we would make the role valued by our desire to do it.

Jesus' washing of the disciples' feet also brought honor to them. Peter recognized that Jesus should not be washing his feet. However, by Jesus washing their feet, he not only taught a lesson to them about servanthood, he brought honor to them. Imagine being one of the 12 people who ever lived who had the Lord of the universe humble himself to wash your feet. Pretty elite group. The point, however, is that I bring honor to people when I serve them. Those I serve may be just as lacking in understanding as Peter was, but I understand what I am doing.
I understand that I am setting an example.
I understand that I am elevating that form of service.
I understand that I am demonstrating the worth of those I serve via my service.
I understand who I am in relation to the person whom I am serving. They are not above or below me, they are my equal.
If I allow myself to be inconvenienced, or better yet, choose to inconvenience myself in the name of service to another who society has devalued, I contribute to the valuing of that person. Particularly if I am a person of stature in the community.

It is amazing to think about the depth of meaning than can come from a valued person washing the feet of others. It is amazing to think of the depth of meaning I have the potential to bring to a situation when I as a person who has value in society's eyes, serve those who society has devalued. Perhaps I will bring value to them. Cool.

McNair
(fcbu)

Helping those who can't repay you

Luke 14:14 "Although they cannot repay you, you will be repaid at the
resurrection of the righteous."

When I am speaking to groups, I often ask the question, "When was the last time you did something for someone who was unable to pay you back?" I also always give the caviat that I am not talking about your elderly parents (whom you are paying back) or your infant children (who will hopefully pay you back). I am talking about strangers or strangers who have become friends over time. People with whom you would typically think you have no particular reason to develop a relationship...no reason other than Jesus' words in Luke 14 and elsewhere that your life as a person will be evaluated at leasted partially on what you did for those people. Well I guess I do have a reason if I am going to be evaluted on that basis. In fact that is probably the major basis for the evaluation of my deeds in life. In Matthew 24 the difference between people will be as obvious as the difference between sheep and goats, at least obvious to the Lord. If you look at the response of the sheep (the good guys, although I personally do have an affection for real goats, not the scriptural illustrative type) they appear to be somewhat oblivious to the fact that the people to whom they were showing kindness, ostensibly without repayment, were in fact Jesus in many different forms.

It is interesting that earlier in the Luke 14 passage, it even cautions you that the people you help might repay you or may be able to repay you and so you will be repaid. It is almost as if you should avoid helping those who can repay you (not really, but there is a priority on the nonrepayers). Wow, so we as Christians should be seeking those people out. I should be thinking, "Sweet! I got to help someone who has little ability to help me back!" It sure gives you a different perspective on helping.

I was talking one of the pastors at my church the other day, a really great guy. I think in the course of our discussion we both concluded that within the group of people with whom he works, it is not necessarily the superstars that he has helped who are the "jewels in his crown" so to speak. They were probably in pretty good shape anyway, on the fast track to successful lives. But rather it is the autistic man or the cognitively disabled woman that he has helped who are his glory, his claim to fame. He can proudly state, "I helped a man with mental retardation be a loved and respected member of a group of Christian peers. I helped an autistic woman feel like she had a place where people wanted to be with her, where she was accepted."

But I guess in the cosmic, kinda spiritual world of things, those people give us the greatest of all gifts. They allow us to please our Lord through our actions. But hear me clearly. The opportunity for service to another human being is what I am talking about. The Christian life is not about earning credits toward my salvation (which I already have through faith in Christ). It is not about pity or charity or whatever. It is about being like God in showing mercy and facilitating justice in the lives of the powerless. The ultimate result of being with devalued people is that I see myself for who I am. In a Micah 6:8 way, I learn to walk humbly with God and with my fellow human beings.

McNair

Disability studies at CBU

California Baptist University in Riverside, California, has just had an MA degree approved by the university curriculum commitee. This is the first step forward in this direction and we are very excited. By its very nature, disability studies is an interdisciplinary/multidisciplinary program of study. This is reflected in the faculty who have participated in the development of the program, coming from political science, education, nursing, theology, law, and ministry areas. We hope to expand the various disciplines which will participate in the program as it develops. The MA degree will offer three foci for study: leadership, policy development, and ministry. Courses range from Intro to disability studies, to Biblical anthro with an emphasis on disability, to organizational leadership, to sociology of disability, to research methods. Within the concentrations courses are offered regarding Christian thinkers on disability, disability ministry, developing the disabled leader, policy development and social role valorization.

Pending accreditation approval, our hope is that the MA will begin to be offered in the Fall of 2008. There will also be a distance education option for people who are not in the immediate area of Southern California. Our goal is to have couses offered online as soon as possible in order for people across the country and around the world to participate. For more specific information, please contact me, Dr. Jeff McNair at jmcnair@calbaptist.edu

Please be watching for further announcements about this degree program as they occur at this blog. This degree program is particularly innovative as we will be one of the few if any Christian universities offering study in this area, and we will be unapologetically Christian in our approach. Exciting times are ahead. Please pray for God's guidance as we develop in this exciting area of study.

McNair

What is the standard?

I had an interesting interaction with a friend the other day. He is a man who uses a wheelchair who attends an adult Bible class I teach at my church. He was sharing some challenges he faces in his life with relationships with various people. In response I would tell him what I understood to Bible to prescribe. So if he is interacting with a person who is impatient, the Bible would say that as Christians we should be patient...we are the Christians in the situation. If another person who is a Christian acts in a nonChristian manner, we are responsible to still act as a Christians. Independent of what the other person does in a relationship, we are still responsible to act as Christians.
A couple of days later, we were having lunch when he asked, "Why is it always the diabled person who has to act like a Christian and not the nondisabled person?"
I thought it was an interesting question on a variety of levels. My immediate response was, "I am not speaking to you as a disabled person or as a disabled Christian, I am speaking to you as a Christian." I think that was enlightening to him (although disheartening to me in that I must project to him that I see him as a disabled person). But it is true that we expect more and better from people with disabilities I think. It is true in special education. When we write objectives we either pull criterion percentages out of the air, or we have too high or too low expectations for a person we are hoping to educate. I have always tried to tell the teachers I am working with to look at the environment that the person you are working with is going into. If it is time on task at work, how much time does the average worker spend on task. If it is accuracy, how accurate is the average worker at the task. There is also discrimination which must be taken into account, however.
There is the research study about the man with mental retardation who was about to loose his job. People from the agency facilitating employment asked why. The response was that he repeated topics at break too much (which is an indication of the discrimination of the workplace, not the skill deficits of the man). Anyway, the researchers determined how often the man's coworkers repeated topics, and worked with the man till he did not repeat topics any more than any of the coworkers. When he was repeating topics at the same level as coworkers, they asked the boss how he was doing. To their dismay, the boss said there had not been any significant change. You see it was a problem with the enviornment. The environment needed to be changed.
I think that is what my friend was getting at. It didn't matter how good he would get at being a Christian, he would always be expected to be better, and would be vilified for the smallest of infractions because of the difference he brought to any interaction, because he uses a wheelchair. So there is a sensitivity there that relates to the previous post about wounding. A sensitive individual who has acquired a disability will become even more sensitive because of the other wounds which are piled on the functional impairment. I compare how I would respond to a situation with how my friend who uses a wheelchair responds, and I say to him, "Lighten up!" A much better response would be for me to address the environment to soften it, to help it become more sensitive to devalued, wounded people. It would also be good to encourage the person experiencing the disability.
I think my words to my friend were encouraging to him. He was quiet for a minute after I told him how I see him, what I was thinking as I counseled him. But sentiments like, "I am not speaking to you as a disabled person or as a disabled Christian, I am speaking to you as a Christian" need to be repeated sufficiently often that both the person with the disability and I myself will come to believe and practice that sentiment.

McNair

Social Role valorization and wounding

At the end of February, I had the opportunity to attend a training in social role valorization offered by Training Institute for Human Serve Planning, Leadership & Change Agentry in Syracuse NY. For those of you familiar with the work of Dr. Wolf Wolfensberger, his thinking was first published in Normalization in the early 1970's. The book was foundational to much of what has happened in changing the manner in which persons with disabilities are treated. In the early 1980's, Dr. Wolfensberger built on his normalizaton ideas and developed what he calls social role valorization. As a result of his work, there are many articles and book which have been written as well as an International conference held every four years. I would highly recommend the training.

Social role valorization begins by recognizing that people are devalued and wounded. In fact, the SRV training lists 18 wounds.

Wound 1: Bodily impairment
Wound 2: Functional impairment
Wound 3: Relegation to low social status/deviancy
Wound 4: Attitude of rejection-disproportionately/relentlesly the more rejecting party has higher values and is more likely to...
1. Repress awareness out of consciousness "their faith tells them they shouldn't do it"
2. Harm is inflicted on the rejected party in unconscious, indirect and subtle forms
3. Negative behaviors are explained as having positive motives.
Wound 5: Cast into one or more historic deviancy roles...social status causes devalued roles or vice versa (we have touched on these roles in this weblog in the past)
So people can be considered...

1. Non human
a. pre human
b. no longer human
c. sub human (animal, vegetative/vegetable, insensate object
d. other "alien" non human but not sub human
2. A menace/object of dread
3. Waste material, garbage, discard, offal, excrement
4. Trivium
a. not to be taken seriously
b. object of ridicule
c. joculaor, jestor, clown, etc.
5. An object of pity - accompanied by desire to bestow happiness on people and associated with the victim role. Person is "suffering"
6. A charity recipient
a. ambiguous/borderline role of object of charity "nobility" in helping
b. burden of dutiful caring "cold charity" entitled to only the minimum/should be grateful takers-not givers
7. A child
a. eternally
b. once again
8. As a sick/diseased organism (leads to handicap) "medicalization of everyday life", "psychiatrization of deviance"
9. In death-related roles: dying, already dead, as good as dead, should be dead,
should never have lived

Wound 6: Symbilic stigmatizing, "marking", "deviancy imaging", "branding"
Wound 7: Being multiply jeopardized/scapegoated
Wound 8: Distanciation: usually via segregation and also congregation...major forms
Wound 9: Absence or loss of natural, freely given relationships & substitution with artificial/boughten ones
Wound 10: Loss of control, perhaps even autonomy & freedom
Wound 11: Discontinuity with the physical environment and objects "physical discontinuation"
Wound 12: social and relationshp discontinuity & even abandonement
Reasons for relationship discontinuity
Wound 13: Deindividualization, "mortification" reducing humaness
Wound 14: Involuntary material poverty, material/financial exploitation
-stripping what you have
-preventing people from acquiring things
Wound 15: Impoverishment of experience especially that of the typical valued world
Wound 16: Exclusion from knowledge and participation in higher-order value systems (eg. religion) that give meaning and direction to life and provide community
-lack moral guidance
-solace and comfort
-participation in community therefore reduced participation in society
Wound 17: Having one's life "wasted"...mindsets contributing to life wasting
Wound 18: Being the object of brutalization, killing thoughts & deathmaking

It was particularly interesting to see how these wounds tend to accumulate in the life of a person who simply has a bodily or functional impairment of some type. But the SRV folks would say that anyone who is devalued will experience these wounds to a greater or lesser degree whether your devaluing is due to impairment, or race or ethnicity, or religion or whatever.

The church needs to take the role of first of all recognizing the wounds of devalued people and then doing what it can to address the wounds in some way. I found it interesting that wound 16 is "Exclusion from knowledge and participation in higher-order value systems (eg. religion) that give meaning and direction to life and provide community." That is, Wolfensberger has identified the exclusion from religion or religious groups as a wound that is inflicted on persons who are devalued. The training is very careful to present the material in a very empirical fashion. That is, they do their best to just present the facts. They simply say, "If you do this, this will be the result." So if you exclude people with disabilities from participation in religious activities, in the church, you wound them.

It was also noted in the training that people who are already wounded will often feel wounds, be they slight more than those of us who are not devalued. I have noticed this fact with friends of mine whom I just suspected were very sensitive people. Yes they were sensitive, but I am coming to believe their sensitivity is due to their pain from being the brunt of so many of the wounds described above.

The church can do much to attenuate the wounding of persons who are devalued, particularly persons with disablities, particularly by just preventing wound #16. Just as there is a kind of a cascade effect with many of the wounds, there might be a positive cascade effect as we attempt to alleviate the wounds. Facilitating church participation might be a significant start in healing persons with impairments, and lead to a diminishing or total healing of the many wounds.

McNair

NACSPED 2007

Last weekend was the third annual conference of the National Association of Christians in Special Education or NACSPED. The conference was held at Azusa Pacific University, and they could not have been better hosts. The conference met in the beautiful Wilden Center, with the keynotes being presented by Dr. Rick Eigenbrood of Seattle Pacific University, and Mr. Steve Bundy, Director of the International on Disability for the Joni and Friends organization. The confernce theme was "Looking beyond disability," the implication being to see the person and not just the disability the person is experiencing. We had a total of 35 breakout sessions which were very well received by the 120 attendees. I was also proud in that at least 4 of our presenters were persons with disabilities. All in all it was a great day.

If you would like to join NACSPED, visit our website above, and come join us at our next conference to be held again at Azusa Pacific University, March 8, 2008 (we have developed a pattern of holding our conferences for 2 years in the same place before moving on).

NACSPED's mission is to ...
...facilitate the integration and participation of people with disabilities into the Christian community.We accomplish this change by:
-challenging Special Education professionals to exemplify faith through vocation
-providing professional development opportunities based on best practices.
-challenging Christian Special Education professionals to use their experience and training in the church.
-advocating for access to a Christian school education, for students with disabilities

We are also endeavoring to begin a movement of lay professionals to work to change their own churches, and make them more open to people with disabilities.

McNair
(fcbu)

Traditions of the church

Mark 7 is the passage where the famous verse in Isaiah is quoted by Jesus. He says,

These people honor me with their lips but their hearts are far from me.
They worship me in vain; their teachings are but rules taught by men
(NIV)

That section has always grabbed me as I wondered how I am guilty of that indictment, and also about how the church is guilty of that indictment. However, as I read on in the passage, there are several other comments by Jesus that really grabbed me. He is talking about the practice of "corban" but I think the passages still apply. Think about these sections as they may relate to the church's ignoring of persons with disabilities, the exclusion of people with disabilities, the traditionally often heard perspective that people with disabilities are not a priority for ministry. In verse 8

You have let go of the commands of God and are holding on to the traditions of
men

And then in verse 13

Thus you nullify the word of God by your tradition, that you have handed
down. And you do many things like that.

Jesus confronted the theological experts over their tradition of corban. He says "you have left the commands of God and are holding onto the traditions of men." The Jews has fallen into generations of missing the point and doing the wrong thing. Sound familiar? What is the result? "...you nullify the word of God by your tradition that you have handed down."

The church has left the commands of God and are holding on to the traditions of men in regards to people with disabilities. In fact in some ways, the traditions of men have changed and the church remains entrenched in a past form of the traditions of men. And what is the result? We are nullifying the word of God. No wonder that when a friend from the East coast was asked to receive counseling from pastors at a particular church, he responded "They do nothing for people with disabilities. Why should I receive counseling from them?" It would be as if someone had recommended in Jesus' time that someone go to the Pharisees to receive counseling in the ppractice of corban. The leaders presented themselves as respresenting God, however, as Jesus says, "you have let go of the commands of God...you nullify the word of God by your tradition." We as the church, nullify the word of God through our discriminatory traditions. We nullify the word of God through our prioritizing traditions. We nullify the word of God by our distancing of persons with disabilities in our traditions. We nullify the word of God by making church membership only accessible to those who can meet criteria based upon intellect. I wonder how people ever evidenced a faith in Christ prior to our times of saying the right phrases. All people had to say to Jesus was I believe and he accepted them. Today you have to behave a certain way, have certain social skills, memorize certain statements, assent to certain theoligical positions, and so on and so on. Now understand, I am not saying we just become a place where people believe in anything. At the same time, however, if our traditions are contrary to the word of God, and are actually nullifying the word of God, we have got to scrap our traditions.

Our traditions are exclusionary, and discriminatory, and intollerant of people with individual differences. It makes for an interesting Bible lesson when you are teaching people who don't have the greatest of social skills or don't quite understand how the traditional dynamics of a class should be acted out. But it also is very refreshing to be in a place where you comments are valued, whether they be about the impact of the Bible verse you are teaching, or to ask you for a dollar, or to discuss hot dogs and pizza.

It is time, in my humble opinion, that we step back and examine our traditions within the church. Tradition is not always the best reason for doing something. Tradition may be the absolute wrong reason for doing something, particularly if it nullifies the word of God.

McNair

40 years but no membership

I was having a conversation with a friend the other day who related an interesting yet sad story. Apparently, she had an uncle who was a pastor, who had a son with down's syndrome. Anyway, the man with down's syndrome was a regular attender of his father's church for nearly 40 years. My friend related how he loved the church and loved God. The man literally would sleep on his hymn book every night. The sad part of the story was that the man was never offered membership in the church. My friend's assumption was that he wasn't offered membership because he was unable to memorize the church's creed, or relate particular faith statements in a manner sufficient to justify his actual membership.

What does a person need to do to express faith in a way that will lead to acceptance in the Christian church? Is faith only expressed through achieving some level of cognitive knowledge? Or can I love God and love my church so much that I literally sleep on my hymnal, possibly as an act of worship?

Obviously we don't give away the farm to anyone who believes anything, but we can also be exclusive in the most negative of ways. I suspect that the man, now a resident of heaven, didn't have the same criteria applied to him there. So he could be a member of God's family in heaven, but not a member of his local church.

McNair
(fcbu)

"Does the church let you to do that?"

Because we facilitate a class for persons with disabilities at our church, Kathi and I often receive phone calls from people interested in our church because we attempt to include people with disabilities.
Yesterday, Kathi got a phone call from a woman wondering about the ministries at our church. Our group called "Light and Power" which is specifically focussed on adults, was the point of her question. She described her son's disabilities, and then asked whether he would be welcomed in the class. Kathi replied that the class includes both people with and without disabilities.

"Really?" she replied. "Does the church let you do do that?" (That is, mixing people with and without disabilities).
Kathi replied, "Sure!"
She then asked, "What time does the Light and Power group meet?"
"We go to the regular church service at 9:30, and then..." Kathi replied.
"Does the church let you to do that?" she interrupted. (That is let the people with disabiliteis go to the regular church service).
"Yes" Kathi replied.

Obviously, this woman's response is a bit funny, but it must also be informed by something. Something that has grown out of her personal experience. Perhaps she and her adult son have been told "You aren't allowed to do that at this church" when she wanted to have her son in a regular church class, or attend the regular worship service. The confused responses of this mother of an adult son is an indictment. Imagine someone honestly wondering whether an organization (the church) which claims to represent Jesus would allow people with disabilities to attend the regular church service, or even house an integrated (people with and without disabilities) class on the campus.

Its a little funny but its a lot sad. It is particularly sad in that this mother herself may be a person who experiences a disability. Her questions and responses kind of make me think that is the case. Also I find that those with mild disabilities often will be turned away with excuses like that. Those without cognitive challenges would typically speak up. Others without the ability to argue their point are more easily turned away. Which is another insidious aspect of her responses.

Hopefully she and her son will soon be attending our church.

McNair

...and to love mercy

In Micah 6:8, the famous passage talks about loving mercy. I have been thinking a lot about this passage lately. What might it mean to love mercy? I suppose I could love the concept of mercy, not giving someone something they might deserve, or forgiveness. But I am tempted to think about loving the acting out of mercy. I love that God is merciful, and I love that people are merciful to other people, sometimes.
Why would I love mercy?

If I have experienced mercy, I will love mercy.
If I want others to know about God and receive His mercy, I will love
mercy.
If I want to be shown mercy, I will love mercy.
If I accept God's mercy and give myself to Him, I will love mercy.
If I understand mercy, I will love mercy.
If I understand worship, I will not only love mercy, I will do mercy.
Again
If I understand worship, I will do mercy.

Mercy implies an object, a person to whom mercy is shown. Jesus on several occasions, makes the statement "But go and learn what this means...I desire mercy not sacrifice" (Matthew 9:13). You might think that He had said just the opposite when you look at how churches do worship. We talk about the "sacrifice of praise." Oh, please. I think it may be more of a sacrifice on God's part to listen to it, than it is a sacrifice to give it. I suspect our singing voices will be much better in Heaven. We focus on sacrifice. God focuses on mercy. We raise our hands in praise (which is fine to do). He wants us to do that but to also look around for someone to whom we might show some mercy. You see, we show our love to God by what we do for other people. James 1:27 says that true worship is to look after widows and orphans. As I have been the recipient of mercy, I offer myself to God "as those who have been brought back from death to life" (Romans 6:13). God's greatest gift to me is mercy. Perhaps my greatest gift to God is mercy as well. Obviously, I cannot really show mercy to God, but I can show mercy to people, the ones to whom He gives mercy, his greatest gift. In the most positive of ways, I become like God, when I show mercy to other people.
When it comes to worship, what does God need from me? Sure in heaven, we will worship in various ways, but we will worship in a different form. You see there aren't any poor or disabled or disenfranchised people in heaven. There will be those who were poor or disabled or disenfranchised while they lived a human life on earth. Perhaps they will have a memory of their poverty or disability or disenfranchisement while they lived out their human life. But there will be no one who is poor or disabled or disenfranchised any more in heaven. Our worship there, will therefore no longer need to have the mercy component it must have here on earth. I can sing songs to God for eternity when I get to heaven. While on Earth, I need to take care of widows and orphans. I need to show mercy to people as an act of worship while I am here on Earth. My worship should be significantly different as an Earthling.
This has been a revelation to me. I have commented elsewhere in this blog that I am confused by worship. I have been confused by church, music based, sermon based worship. But when my son goes out of his way to take a man with disabilities out to lunch, by making the man's day, by filling his stomach with great tasting good food that he would not otherwise be able to affort, I am not confused about the worshipful nature of that act. It is an act of worship, as God desires mercy.

I have shown you, O man, what is good and what the Lord requires of thee...to love mercy.

McNair

Good news

If you are a fan of The Nightmare Before Christmas like I am, you will remember the scene where the mayor of the town drives his car through the streets proclaiming, "Good news! Good news!" I have kinda felt like that the past week. Little old Cal Baptist University, here in Southern California, has the potential to make a significant contribution to the world of disability, particularly from a Christian perspective. More details will be provided as things develop but some pretty amazing things (from my perspective) are in the offing, Lord willing. Please keep us in your prayers!

Thanks,
McNair
(fcbu)

Spiritual Development

Picking up on the last posting about the story of the 3 Russian monks, I was thinking about what "spiritual development" might mean and how it is achieved. I have known people with graduate degrees in divinity, who were spiritually lost. Their lifestyles were devoid of anything that would represent a Christian faith, or even a Christian world view. People who could quote passage and verse, or could share the thinking of Bonhoeffer, or explain Niebuhr's Christ and Culture, but lacked a basic faith.

I have also known people who could barely write their own names, perhaps have memorized a couple of Bible passages, but were an example of a profound faith in God that impacted every area of their lives. Their conversation revolved around God and church and faith. Their questions were largely about how they could grow in faith, or as one friend often asks, "Do you think I am doing better than I used to do?"

As I think about the kind of Christians I want to help develop, I would have to choose the latter. But I wonder sometimes about the kind of Christians our church structures are currently developing. I have said this before, but I am even more convinced that if we want to learn about love, we should learn by doing more than talking about love, or memorizing passages about love. We will produce a certain type of Christian when our knowledge is not developed in a more hands on type of a situation. Everything is one step removed from reality with the assumption being that if I read 1 Corinthians 13, I will be able to make the connection on my own. That I will generalize my learning, to use a special education term. But we have learned in special education that in order for some learning to take place, it must occur in the actual situation. That is, if you want to teach me to exchange money in a store, you need to take me to the store, or I won't learn. I cannot learn some things under simulated conditions...I need to be in the actual situation.

So I guess what I am advocating is a kind of a spiritual curriculum. A curriculum that is not knowledge based as in a public school classroom (what much of religious education looks like) but a different kind of approach. One that is more practical, more applied that teaches me in the actual situation so I don't need to generalize my learning. I am learning directly and will therefore be able to make the direct application.

Take love for example. What does a situation look like where people have to really make an effort to love others? What occurs in such a situation that changes people? What if I was taught about how to love people with challenging people in the room, in my midst? I will then either learn to love those people, or I will exit the difficult to love person or exit myself. Largely, in the past it has been the difficult to love person who has been asked to leave, and I have not learned the lesson about love. It is also useful to consider situations where we are not confronted with people who have been characterized as "difficult to love" and think about what people are learning in situations where "difficult to love" people are excluded from places where people are being taught about love?

People who act atypically, for whatever the reason (disability, sin, whatever) teach me about love. I think about the students I taught who were emotionally disturbed. In their rantings and swearings at me, I came to understand that their rantings and swearings were their disability talking. I wasn't always perfect, but I was softened by them, and learned to love them. Their rantings and swearings were less threatening to me because I came to understand them and love them in spite of their emotional disturbance. I was changed, I learned to love. I am now drawn to such people. I am still rejected at times, and I still am impatient, but I was forced to learn to love them, and I was the beneficiary of the lesson (I hope they were to some extent as well). The end result is that I was softened. I learned another aspect of the love of Christ. I could have studied love all day long, but the real learning came to me when I was confronted with people who caused me to put my head knowledge, and the faith I claimed to have into practice.

People with various disabilities will do that. I don't say that because I find them particularly difficult to love, but they will act atypically, they will take me out of my comfort zone, and as a result, I will grow. I want that growth for everyone in the church. For such growth to occur, there needs to be a change in the way that we do church, the way that we do Sunday School, the way that we do Bible study, the way that we do missions, the way that we do most things in the church. Instead of learning about how to love people, love people who others have not loved. In order to help the poor, don't have speakers come to tell you about the poor, have poor people come to your church and be in your Bible study. They may know a great deal more about faith and how it is acted out in daily life than you do with your 60K per year income. We may know the head knowledge, but they just might know the faith knowledge.

McNair (fcbu)

Walking on water

In the book, The road to Daybreak Henri Nouwen relates the following story, attributed to Tolstoy.

Three Rusian monks lived on a faraway island. Nobody ever went there, but one day their bishop decided to make a pastoral visit. When he arrived he discovered that the monks didn't even know the Lord's Prayer. So he spent all of his time and energy teaching them the "Our Father" and then left, satisfied with his pastoral work. But when the ship had left the island and was back in the open sea, he suddenly noticed the three hermits walking on the water - in fact they were running after the ship! When they reached it they cried, "Dear Father, we have forgotten the prayer you taught us." The bishop, overwhelmed by what he was seeing and hearing, said, "But, dear brothers, how then do you pray?" They answered, "Well, we just say, 'Dear God, there are three of us and there are three of you, have mercy on us!'" The bishop awestruck by their sanctity and simplicity, said, "Go back to your island and be at peace."

Nouwen then comments in regard to three handicapped alter servants at the L'Arche community where he was staying,

When Louis saw the three handicapped altar servers, this story came immediately to his mind. Like the three monks of Tolstoy, these men may not be able to remember much, but they can be holy enough to walk on water. And that says much about L'Arche.

You see, we are confused by this. Faith is so linked with knowledge and intellect by Christian society, that we cannot imagine a person of great faith not knowing the Lord's prayer by heart. How can someone be a growing, believing, faith filled Christian if they lack basic intellect? But that is the lesson of the story, isn't it? Nouwen saw the connection. We don't. The men in the story were in a place where nobody ever went. When the bishop finally did go there, he saw their limitations in regards to how he understood church should be. With his limited yet prideful understanding of "church" he attempted to change the three monks. They, in their humility took what he had to offer hoping it would help them to grow toward their Lord. But in reality, it was they who should have been the teachers. When they ran to the ship, it was to regain the knowledge they had never quite gotten, not to teach the bishop how to walk on water.
I am beginning to understand the truth of this story. The simple faith of my cognitively disabled friends outpaces my own faith in so many ways. Rather than putting them into the prideful straight jacket I call Christian faith, a straight jacket they will never be able to wear due their limitations, I should learn from them, remove my straight jacket and allow them to soften me.

He has shown thee, O man
What is good and what the Lord requires of thee
But to do justly
And to love mercy
And to walk humbly with your God.
Micah 6:8

McNair

The battle...metaphor?

"For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evin in the heavenly realms... And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the saints." (Ephesians 6:12, 18)

As I was driving to various schools this morning, I was listening to my ipod blast "The Gates of Delirium" by Yes (I have ripped every Yes CD of mine onto my ipod). The 21 minute song is basically the depiction of a war. As I listened, I reflected on many recent experiences I have been having.

Could it just be that I am in the midst of a challenging time in my professional life, and just have to work through it? I suppose it could be. But I wonder if there is something more going on right now. You see, not only am I a huge Yes fan, I am a JRR Tolkien fan, and have read The Lord of the Rings probably 15 times. It resonates with me because evil is not shrouded, that is the source of evil, the dark lord, is in the open, so to speak. Frodo knows he is fighting against a real evil. He is awakened from his pastoral existence in the Shire to that realization. Now in LOTR Frodo has a most critical part to play, but he also recognizes that we are all in the battle, all playing a part, whether it be a moth that Gandalf speaks to at Isengard, or a returning King in the form of Aragorn. Tolkien recognized this as well, as in one of his letters, he speaks of the hidden depth, the reality of the spiritual nature of human interactions. He understood, for example, what he meant when Jesus says that when you do something for the least, you do it for Him. It is the unseen reality. It is a strike in a battle for God and against evil.

Well, I feel as if I am in the midst of a battle at the moment. I have been tempted to rage, and confrontation, and just throwing up my hands and walking away. But then I reflect on the Ephesians statement and realize that I may be on the verge of a victory in the unseen battle, but am being confronted as Watchman Nee says in The Normal Christian Life, to look in the wrong direction. Will I keep my eye on the prize, the furthering of the Kingdom of God (as I understand it), or will I allow my pride, my rights, my whatever to allow a victory for the enemy? I have to choose, and I have to be prayerful and alert, and keep on praying. You see, the attacks can come from the saints themselves. But if I am prayerful in the Spirit, and I am alert, recognizing that I am tempted to look in the wrong direction and that there are bigger things potentially at stake, and if I pray for the saints themselves who are potentially a part of the attack, perhaps I will be given the honor of making "known the mystery of the gospel."

The battle is not a metaphor. The battle rages.

It is hard to see something that apparently many others do not see particularly when you think it is a critical part of the "mystery of the gospel." To see others being encumbered in the larger fight for the truth to the point of being a tool of the other side is difficult and obviously is not an easy thing to point out to them. So I need courage and I need wisdom. I need to be alert and I need most of all to be prayerful. Please be prayerful too.

McNair
(fcbu)

"Why should ministry to people with disabilities be a priority?"

I was very discouraged this past week. I had to opportunity to meet with a leader in the church about issues related to the church and disability. By the church, I mean the church on a global scale, or the church in the United States. I wasn't talking about just one local church, we were talking larger. The leader made the comment in all seriousness, "Why should ministry to people with disabilities be a priority?" It wasn't a question asking for an answer, it was more a statement of this church leader's position on disability itself. People with disability were not a priority to this person, and her/his question basically was why should it be a priority for anybody? I would have answered, but the situation was such that any response I might have made would only have caused a digging in of the heals. Maybe that is partly why I felt depressed. The unrepresentativeness of my Lord and her/his Lord, Jesus Christ, and my remaining silent in the face of the comment.

I can tell you, that for me to remain silent in such situations is very unlike me, but for some reason I felt I should. I will probably have the opportunity to meet with this leader in the future, and perhaps I will have the opportunity to "bring her/him around" but it was almost breathtaking the ability of this person to simply dismiss people with just a statement. I could have countered by talking about the millions of people just in the United States, let alone the perhaps hundreds of millions in the world.

But that is where we are in the church right now. On a positive note, I think we are on the crest of a wave that is about to break over the church, and Lord willing through the Church, over the world as well.
But when people who are Christians make statements such as that,
I wonder about their faith,
I wonder about their compassion,
I wonder about their love,
I wonder about their trustworthiness,
I wonder about their knowledge of their Lord.
I am tempted to condemn them, but I just wonder. Its like they have given me a glimpse into their sin life, like I was a priest receiving confession, only they don't see their confession as sin. They see their statement like that of a racist sharing a racist joke with another racist. But there is such an assumption that I would obviously agree with their statement. "Of course, all Christians don't see people with disabilities as a priority for ministry." Its like that statement is irrefutable.

Well although I couldn't speak up in that situation (trust me it was very complicated), I will try to do better in the future. I am on a personal mission to refute the statements which have been used in the past, and apparently continue to be used to excuse church leaders from having a heart for people with disabilities.
So if someone says,
"Ministry to people with disabilities costs too much" I respond boldly, "How much does it cost? Do you even know or are you just making excuses?"
"Ministry to people requires a lot of training" I respond boldly, "What training is required to take a person with a disability out for coffee? Do you know anyone with a disability?"
"Ministry to people with disabilities is not a priority?" I respond (or will do better in responding in the future) "Maybe its not to you, but it is to the person you call your Lord...Perhaps you should get to know your Lord a bit better before you make statements that reflect on how he prioritizes people."

Making priorities on some level shows weakness, as I cannot do all things at once. If God does prioritize people, He is a weak God who cannot do for us all, love us all, minister to us all all at once. We need to wait our turn. The God I serve is not a God of priorities. He is all powerful, all knowing all everything. I don't need to wait in line for him to discover me and then make me a priority. He created me the way I am. I wish those in leadership of Chrisian churches would get a better handle on that. Get a better handle on who the God they claim to serve is.

McNair

L'Arche Canada statement relative to Ashley

Here is a statement from L'Arche Canada regarding the "Ashley Treatment". Consider it along with the 1/11/06 and 1/24/06 web entries.
McNair

January 15, 2007

L’Arche Canada Questions Ethics Used to Justify “Ashley Treatment”

In the past several days much media attention has been given to the case of a nine-year old Seattle girl named Ashley who was born with static encephalopathy and unable to develop intellectually beyond the age of three months. Her parents, with the support of doctors and ethicists, opted for surgical intervention and hormonal treatments that will keep her small and prevent her from growing into an adult woman. Her uterus and breast buds have been removed and estrogen injections are ensuring she will remain for her lifetime around her present weight of 75 pounds. Ashley’s parents explain their primary concern in this decision was Ashley’s comfort and quality of life, especially as she grew heavier and it would no longer be possible for them to care for her themselves at home.

It is difficult to sympathize with the ethicists and medical doctors who are now promoting the so-called “Ashley treatment.” Ashley’s case does not exist in isolation from human society, and it raises profound ethical and social questions. With the possibility of “designer babies” already on the horizon, it should call us to a much more rigorous public conversation about values and where there is and where there is not a place for medical or surgical interventions. Alarmingly, even before these questions have fully surfaced for discussion other parents are seeking this treatment for their children with severe disabilities.

The term “slippery slope” is often dismissed as fear-mongering, but the fact is that a medical and ethical precedent has been set. We cannot measure the loss to the quality of our humanity as a society that will result from such manipulation of human life and growth.

Also, the implications of condoning the permanent infantilization of a person with a disability are of grave concern with regard to the safety and respect for the dignity of other people born with significant disabilities. People with disabilities have fought hard to change the cultural images which portray them as childlike and passive—images that only serve to further limit their options for friendship and work and to be contributing citizens. This “treatment,” if it comes to be regarded as acceptable, will only reinforce these inaccurate and demeaning stereotypes.

For the family of a child with an intellectual disability there are usually three broad concerns that will determine the extent to which he or she is able to live the fullest life possible: (1) The quality of care and community around the child. (2) The cost of caregivers and practical and technical supports the child will need. (3) The suffering they fear may befall their family member as he or she grows to adulthood without the full range of abilities and mental facility of other adults. Fear that their child will suffer can cause families to limit their children’s options.

Ashley’s parents, who have resolved to keep Ashley at home for their lifetime, clearly had in mind all three of these concerns in making their decision. At one point in their blog* the parents explain, “We tried hard and found it impossible to find qualified, trustworthy, and affordable care providers.” The medical ethics of this case, and the fact that there are other care-giving alternatives aside, this comment strikes at the heart of the pressing need for adequate funding for people with intellectual disabilities. This too is an ethical situation for which we must take responsibility as a society. The challenges parents of children with special needs face are often hidden. Along with the everyday joys of living with their child, many engage in a wearing struggle for financial assistance to provide the care and support that their child needs, and usually they do this with great devotion and enormous self-sacrifice.

As children develop, there are other living options. The experience of L’ARCHETM over forty years in hundreds of situations around the world is that people with a wide range of intellectual and, often as well, physical impairment, can grow to adulthood, flourish, and nurture those around them. For this to happen we need to accept that vulnerability, limitations and even suffering are part of life and growth.

Take Karin** for instance, whose needs for life-long total care are similar to Ashley’s and who moved into L’ARCHE from a nursing home in her early teens. Karin is able to do nothing for herself and receives her food from a tube, but she has grown into a beautiful young woman. Lifts, a special wheelchair and a wheelchair van, and people around her who are attentive to her need to move frequently and to be well-cared for physically, enable her participation in her household and in the wider community. She has genuine friends who like to spend time with her, and she is a member of a dance troupe. Her presence on stage is captivating as she twirls in her wheelchair with her partner. Through her smile and facial expressions Karin seems to convey the full range of human emotions, from love and compassion to fear and anger. One wonders if Karin would be able to do this had she been denied the opportunity to go through puberty. L’ARCHE is by no means alone among good services for people such as Ashley and Karin.

Ultimately, Ashley’s case has to do with the kind of society we want. Our society has a tendency to deny aging and to hide from the reality that we are ultimately powerless and quite fragile beings who need each other. Our lives are a remarkable gift entrusted to us and to others for an uncertain number of years. The person with a severe physical or intellectual disability is put more at risk in a society that is not rooted in awe before the mystery of life itself.

* Ashley’s parents’ blog is at: http://ashleytreatment.spaces.live.com/blog/
** The name has been changed to respect this young woman’s privacy.

Please pray for California Baptist University

I wanted to make a request of those of you who read this blog, and have a passion for persons with disabilities.

Please pray for California Baptist University.

At the moment there are some very exciting possibilities in the works here which I believe, have the potential to make a significant impact, long term, on the Church and persons with disabilities. We and those in leadership need wisdom to proceed.

I hope to be able to share with you the specifics of what is in the works, in a month or so. But I would really beg you for your prayers that God's will would be done here.

Thank you.

McNair
(fcbu)

Comments about the Ashleys of the world

Regarding the story of the little girl Ashley, demeaned with the name, "pillow angel" a term which from a normalization perspective is sick in and of itself, I would like to make two points.

First, we cannot marginalize people and then criticize those who are left alone to care for marginalized people for their decisions. I wonder if the the adults in Ashley's life felt supported in her care, anywhere. Sure the wrongness of the surgeries stands on its own merits. We can criticize them. However, if we hope to avert a rash of such medical treatments toward people who inconvenience their families by their very lives, the community, and I would say the faith community, the Christian Church needs to come along side of those families and individuals who face the challenge of severe disability in their lives and provide support. Why aren’t the little Ashley’s of the world in the Sunday School classes of most churches? Yet we will criticize those who perform abusive surgeries. Where is the church at the birth of such children? Yet we will criticize the decisions of those facing the birth of a child with a disability who choose abortion...at least as a church I hope we will be critical of such people (I'm not sure we actually are). Obviously, the laws are not going to prevent families from stopping tube feeding, or performing radical surgeries on family members. However, if we as the community provide support to people challenged by the unknown of disability in their lives, those faced with the kinds of decisions the medical profession increaingly offers, will be less likely to abort, or create people who are further disabled by surgery, because they do not see themselves as facing their challenges alone. They see the experience of others in their community whose child with disability may be a value added to their families, or their churches or their communities. But those children have to be present and they have to be supported to change the minds of people tempted to do the wrong thing.

Second, the decisions relateive to performing the procedures on Ashely were condoned by a group of medical ethicists at the hospital where the surgery was performed. Well, medical ethicists are lost. I would love to know, for example, how many of those on the medical ethics committee who made the decision to go forward with the surgery, even know a person with a profound cognitive/physical disability. I wonder if any have friends with such disabilities. I wonder if any ever spent the day with a person with a severe disability. Decisions are made on the basis of ideas ethicists have about who those people are, and I would suspect they have largely never gotten past the notion of people with disabilities as “other.” My goodness, the medical profession has become rabid over down syndrome being prenatally diagnosed and those detected being aborted. These doctors are listening to medical ethicists when they say such abortions are humanitarian because they prevent a suffering, or poor quality life.

So lets point out the madness of the reasoning, and the surgery, and those who defend decisions by medical ethicists. But lets also take away the argument that the families faced with the challenges of raising children with severe disabilities are in it alone, by coming alongside of such families with acceptance and support.

McNair (fcbu)

Come as you are... if you are the way I want you to be

It is sometimes hard to believe what people will do within the Christian church regarding people with disabilities. If you follow what I write here, you might think that I overstate the changes that need to occur within the church. Just by way of example, here is an email I received this morning, and my response. I suspect it relates to a student who has some form of learning disability...a mild disability. It is sad but it continues to be the reality.

First the email...

Can someone please provide feedback on the following issue:
Student attends a private religious high school. Even though she has a documented disability, the school will not provide her accommodations in theology classes based on the fact that "Jesus said "come as you are" .
Question is asked Are theology classes exempt from ADA? And what other Bible references may be used as counter point.

My response...

Hello all-
No accomodations for the theology class because Jesus said, "come as you are." I think my first question would be is this person actually serious. Is this some example of a bad joke. Unfortunately I have had sufficient experience with people with disabilities and the Church to know this probably is real. It is particularly troubling that the person teaching this class is teaching theology, not mathematics or reading or something.

Obvious responses come to mind. What if the door was not disabled accessible, or there were steps up to the classroom because the school did not comply with ADA. Would there be a requirement to make the door larger or build a ramp, or is that another example of "come as you are." What if the lights need to be brighter because of a visual impairment, or some sort of audio was needed for the class. Is the answer "come as you are?" Other types of disabilities, such as learning disabilities are not different. But I suppose, the Bible is clear that those with disabilities in the scriptures all always brought themselves to Jesus. No one lowered them through the roof, assisted them to come as they are, or Jesus never went to places where people with disability (like a disgusting, bubling pool) were to help them. Does Jesus ever come as he is to them? Might that example of Jesus be employed as well.

What is so sad about the "come as you are" comment is that it is meant to include every one. Everyone as they are is to be accepted. It is clearly NOT meant to be a command for exclusion.

I have come to the point that I am intolerant (yes, I am admitting I am intolerant) of responses such as the one given. Lets just be honest and say that the teacher doesn't want to be bothered with people with disabilities, doesn't want to do the work (much or little) to accomodate a person who wants to study theology, and that all this other excuse is just a smokescreen for discrimination.

The sad part of this story, however, is that 1) the teacher of Christian theology thinks she/he can make the statement she/he does, 2) such people are teaching our children Christian theology, and 3) this is not totally uncommon within the Church. I hear of such stories and recognize how far we still have to go.

I would refer the teacher to the John 9 passage where Jesus heals the blind man, which states that we must work the works of God, so that God's glory might be seen. What about 1 Corinthians 12? Apparently this teacher doesn't think all members of the body are important, even though Paul says they could be absolutely essential. I am also reminded of Ezekiel 34 where the teacher is like a sheep who bumps out the other sheep. I could go on and on.

Perhaps the best solution would be to introduce that Christian theology teacher to her/his Bible.

Just some quick responses.
McNair

This is a perfect example of how we as Christians separate the teaching of theology from theology, or the teaching about love from love, or the teaching about the example of Christ from living the example of Christ. I mean this student is probably a person with a learning disability. That is, she/he had the potential to understand the content of the class, but just needs some accommodations (things like assistance in taking notes, or alternative assignments, or the like). I also think this is a perfect example of why we desperately need people with disabilities within the church (see January 7, and January 3, 2007 entries). They make us live what we say. I remember talking about poverty when I had a homeless man in the group. It challenged me to really examine what poverty is and who poor people are.

I am only pretending to teach about who God is (theology) when my starting point is diametrically opposed to one of the most basic characteristics of who God is (love and acceptance of people)? It is a malaise of the Church.

McNair

AAIDD statement on growth attenuation

You may have seen the recent stories about the little girl who had the medical procedure to keep her from growing.
Go here to read from the father's blog as to why they did the procedure.
Here is another comment from "Not Dead Yet" website.
The American Association on Intellectual and Developmental Disabilities prepared the statement below in relation to this whole issue. It is a very interesting response. I will comment my self in a future blog.

McNair
(fcbu)

Unjustifiable Non-therapy: A response to Gunther & Diekma (2006), and to the issue of growth attenuation for young people on the basis of disability

From
The Board of Directors of the American Association on Intellectual and Developmental Disabilities

As leaders of the American Association on Intellectual and Developmental Disabilities, the oldest multidisciplinary association in the United States representing professionals within the field of intellectual and developmental disabilities, we have great sensitivity to the concerns facing parents of children with profoundly disabling conditions. They indeed face many extraordinary challenges as they strive to raise their children, and they should be provided with the supports and services they need to ensure that their children, as any others, have opportunities to achieve all that life has to offer. Naturally, these services and supports include medical and habilitation therapies. We as a society should be supportive of innovative approaches to treatment, but we should also demand a thorough evaluation of potential benefits and balance these against carefully considered risks.

Gunther and Diekema1 have described a controversial intervention they provided to Ashley, a 6-year-old girl with profound and multiple impairments, which they refer to as “growth-attenuation therapy.” This intervention, approved and apparently promoted by the parents, consisted of high doses of estrogen to bring about a permanent attenuation in her size. Together with a hysterectomy and removal of both breast buds, the intention was to minimize the likelihood of a future out-of-home placement by maximizing the future comfort of this child and
ensuring a manageable care-giving burden for parents who wanted very much to maintain their daughter in their loving environment.

The ultimate and worthy goal in this case was to ensure a higher quality of life for Ashley through the avoidance of an eventual placement outside of her family home. As individuals and as an organization, we endorse policies and actions that help families to rear their children with intellectual and other developmental disabilities at home, nurturing their capabilities as well as coping with their impairments. We applaud the efforts of the many caring professionals who are engaged in providing extraordinary care to children with intensive and pervasive support needs and who continue to meet those needs throughout their adult lives. We also recognize the many challenges faced by physicians as they weigh with families the benefits versus costs of various treatment options and struggle with the complex ethical concerns that can arise. Gunther and Diekema, as well as Brosco and Feudtner2, discuss some these issues in the context of growth-attenuation therapy and seek responses from the field to inform future practice. As the current leadership of the former American Association on Mental Retardation and now the American Association on Intellectual and Developmental Disabilities, we view growth-attenuation as a totally unacceptable option. We share the concerns raised by Brosco and Feudtner, and we will add our own to theirs.

In Gunther’s and Diekema’s judgment, growth attenuation offers reasonable expectation of improved quality of life in this case. However, the history of the medical establishment’s involvement in exactly these types of quality of life issues has, as noted by Brosco and Feudtner, led to the support of some very regrettable past policies (e.g., involuntary sterilization, lifelong involuntary institutionalization). All physicians must recognize that the decisions they make will be colored by their subjective views of the status of their patients. In stating that there will be no significant future improvement from her baseline, Gunther and Diekema reveal that they and their colleagues recognize little potential for growth and development of this six year old child. It is not then surprising that they find it “hard to imagine how being smaller would be disadvantageous to a person whose mental capacity will always
remain that of a young child” (p. 1016). The abundant evidence that all children are able to learn and that the cognitive capabilities of children with severe motor impairments can be grossly underestimated were not mentioned, and while we do not pretend to be as familiar with this situation as the treating physicians, we think that extant case histories of people with cerebral palsy incorrectly diagnosed as having profound mental retardation should be recognized and discussed.

Brosco and Feudtner questioned the efficacy of the procedures described by Gunther and Diekema, indicating that there is no guarantee that growth attenuation and hysterectomy will effectively delay out-of-home placement. We agree. Further, because the future development of any six year old child will depend on many factors, the medical, social and programmatic needs of the adult Ashley will become cannot be anticipated with certainty. Over recent decades, the principle has been firmly established that an ever-improving future for individuals with extensive impairments is achievable, and in fact there may be adult programs evolving that will offer these parents options they are not now able to consider.

Brosco and Feudtner next noted that risks of harm from this “heavy-handed” manipulation are unknown for this population, and this is an issue that begs for further amplification. Estrogen has hugely important actions. Even a cursory search of the literature shows that it influences things as wide ranging as immune system function and bone growth3 (e.g., Weitzmann and Pacifici, 2006), neuroprotection4 (e.g., Bryant, Sheldahl, Marriott, Shapiro and Dorsa, 2006), and hair follicle physiology5 (Ohnemus, Uenalan, Inzunza, Gustafsson and Paus, 2006). Further, estrogen is metabolized within the central nervous system throughout life, and the negative effects of its depressed bioavailability on aging are well documented. Thus, this artificial manipulation may have many unforeseen consequences, and while optimism has its place, there is ample reason to suspect that some of these consequences will be deleterious.

Brosco and Feudtner discussed the precedent setting potential for growth attenuation that can lead to misuse, and that the intervention does not really address the core problems faced by families and our society regarding services and supports to affected individuals. These are additional excellent points with which we concur. However, they seemed to accept two critical assumptions that we do not. First, in discussing the potentially detrimental effects of growth attenuation, they argue that imposition of small stature might not be a concern if we truly accept the position of disability rights advocates that there is value in every human life and that the worth of a person goes beyond physical appearance. We certainly view people with disabilities as valued members of our society, but we fail to see anything in the disabilities rights movement to justify imposing constraints on anyone’s development. To argue this point grossly misrepresents the views of the disability community and turns logic on its head.

Second, Brosco and Feudtner seemed to implicitly accept the idea that growth attenuation is in fact a type of therapy. We question this critical premise. Given that therapy is intended to address a condition of a patient, the target in this case would have to be the growth and maturation expected as a consequence of Ashley’s normal development. While there are many other treatments that target aspects of physical appearance, these seem qualitatively different from the present case. Although the closest parallel would be the past exposure of tall young women to high doses of estrogen to limit their height, we see this as a considerable stretch. It seems a bit desperate to refer to a practice that fell out of favor years ago (and would be viewed with extreme skepticism today) in defending these procedures, but even in those past cases the intervention was provided with the assent of the patients and to address specific desires.

Clearly, assent was not obtained from this child, and there was no way to assess her willingness to have her body altered irreversibly. Brosco and Feudtner argued persuasively that growth attenuation has to be considered a procedure that has unknown risks and permanent consequences.

Because there was no urgency in this case, a very substantial burden of proof of benefit should have been imposed before moving forward. We see no such evidence of benefit, and despite description of a committee review process (apparently for future cases), there was no mention of including an independent legal advocate for the child or any other professional with explicit expertise in disability rights and autonomy, nor was it apparent that anyone participating in the process would be knowledgeable about the ever expanding options for in-home supports and services. The lives of parents of children with severe disability are profoundly affected, and these individuals are asked to shoulder exceptional responsibilities for care-giving. They should be supported as they strive to meet the extraordinary needs of their children, and we as a society must acknowledge and value their efforts. We must provide them with the supports and services they need to succeed in what Brosco and Feudtner rightly refer to as their “most admirable of undertakings.” However, growth attenuation of their children should not be included as an option. Under our law, parents are vested with the responsibility for making health care decisions for their minor children, but parental prerogatives are not absolute. Children have their own distinct rights and protections afforded them as individuals established in ethical principles and legal statutes. These rights should be of central relevance in the current situation, yet they did not seem to receive the attention they deserved.

With a damning combination of uncertain benefits and unknown risks, growth attenuation as described by Gunther and Diekema is bad medicine, but this practice has even more troubling implications. By extension, if weight ever becomes a difficulty due to age-associated loss of strength for the parents (rather than obesity of the child), then the rationale would suggest that bariatric surgery or severe restriction in caloric intake would be a form of therapy. If that proves insufficient, the goal of reducing the size of the child could be addressed by “amputation-therapy,” justified by the fact that the patient would never be ambulatory in any event.

Should the child develop behaviors that increased the stresses of care-giving, then it should be perfectly acceptable to prescribe whatever dosage of psychoactive medication would be necessary to bring relief to the caregivers.

It seems painfully obvious that medical practice for an individual can rapidly degenerate if the anxieties of the parents regarding as yet unclear future issues replace the medical best interest of the child as the primary focus, even with the noblest of intentions of all parties involved. We see an enormous potential for abuse here, and given the well-documented history of mistreatment, neglect and devaluation of this population, we are stunned and outraged by the very fact that the relative merits of growth attenuation could, in 2006, be a topic for serious debate in this forum. As described by Gunther and Diekema, it distorts the concept of treatment and devalues the patient’s personhood. While references to slippery slopes should be made with great care, we believe that this practice, if judged acceptable, will open a doorway leading to great tragedy.

This door is better left closed.

AAIDD Board of Directors:
Hank Bersani, Jr. PhD, President
David A. Rotholz, PhD, President-Elect
Steven M. Eidelman, Vice President
Joanna L. Pierson, PhD, Secretary/Treasurer
Valerie J. Bradley, Immediate Past President
Sharon C. Gomez, Member-At-Large
Susan M. Havercamp, PhD, Member-At-Large
Wayne P. Silverman, PhD, Member-At-Large
Mark H. Yeager, PhD, Member-At-Large
Diane Morin, PhD, Canadian Member-At-Large
Michael L. Wehmeyer, PhD, Member-At-Large
Bernard J. Carabello, Presidential Advisor
M. Doreen Croser, Executive Director

References
1. Gunther D, Diekema, D. Attenuating growth in children with profound developmental disability: A new approach to an old dilemma. Arch Pediatr Adolesc Med. 2006; 160: 1013–17.
2. Brosco J, Feudtner C. Growth attenuation: A diminutive solution to a daunting problem. Arch Pediatr Adolesc Med. 2006; 160: 1077–78.
3. Weitzmann, M., & Pacifici, R. Estrogen regulation of immune cell bone interactions. Ann N Y Acad Sci. 2006; 1068: 256-74.
4. Bryant, D., Sheldahl, L., Marriott, L., Shapiro, R., & Dorsa, D. Multiple pathways transmit neuroprotective effects of gonadal steroids. Endocrine. 2006; 29: 199-207.
5. Ohnemus, U., Uenalan, M., Inzunza, J., gustafsson, J., & Paus, R. The hair follicle as an estrogen target and source. Endocr Rev. 2006; 27: 677-706.

Church of the merry-go-round

Impossibleape, a frequent contributor to this weblog made an interesting comment to the December 12 posting. He writes,

there comes a day when we shouldn't have to be spoon-fed another bible lesson, comfortably entertained and made to feel that our hearing the word (again and again and again) is enough.

He is so right. You see, church is understood as going to a church service and hearing the pastor preach a sermon, singing some songs in worship and then praying. Perhaps we then go to a Sunday school class where we study the Bible some more. We end up like experts on the study of baseball who play very little baseball. I sometimes even wonder at the regular "altar calls" which happen many weeks at church. I would bet that 90% of those in the congregation are already saved.

Is that what church is? Is that what the capital C Church is about? Hearing many sermons, as good as they may be, singing many worship songs, and prayer? Obviously that is a part of what church is, but it definately is not exclusively what it should be. But that is what church has become for too many people. Then someone with a disability comes and the attenders get confused about how they are supposed to do church when a noisy person with a cognitive disability is in the audience. They see the mentally ill person in their midst as someone who needs to be excluded. "How can we get through the lesson on love if that person is so distracting?" "If that person is involved, we can't do church in the way we have always done it?"

I don't think that is what church is supposed to be. Perhaps a small portion, but not the majority. And when we do get people saved, we ruin them by letting them think that that is what church is supposed to be.

Why are churches constantly begging for people to work in the children's Sunday school classes? Why are people with disabilities not a priority for ministry in ALL churches? The problems are related. It has to do with the structures of the church and how they demand something which is not what the church should be.

I personally do not now nor have I really ever understood what worship is. Is worship little more than me becoming emotional at a particular song whose lyrics or music connect with me? Is that what worship is? Should I disconnect my intellect from the lyrics of the music or disconnect my aesthetic appreciation from music and lyrics and try to be swept away by what I am experiencing? Should I actually choose my church on the basis of the style of music presented? Is that what church is? Is that what worship is? Such an approach to church, to worship, is debilitating in that it provides a substitution for a more demanding way of doing the harder worship like taking care of widows and orphans (see James). Don't get me wrong (if you are even still reading), I am absolutely not saying we should not sing songs of worship to God.

But please do not confuse songs of worship with other acts of worship. Singing songs are the easy way to worship. Your singing will be made a more beautiful act of worship if you have worshipped in other ways as well, ministering to those who are disenfranchised, working with children, loving your neighbor. Clapping to the music is more enjoyable if a severely disabled adult is clapping along, off time, with a huge smile on his face.

Sermons and Bible studies are of value in themselves. However, teaching on 1 Corinthians 13 without anyone in the room who is particularly difficult to love, is easy. Is love easy? You might think so.

I don't need another sermon on 1 Corinthians 13. I need people who challenge me to live and love in the manner described in 1 Corinthians 13. By that I am not claiming that I entirely understand the passage. I am saying that I need to put what I do understand about the passage into practice. Challenge me to love a mentally ill woman. Have her in the church in my midst. Have the leadership clamour to understand what to do with her. Then we will all really learn about love, and the extent to which we are willing to love others who are difficult to love. When am I really going to be playing baseball rather than just talking about baseball. What do I do with church structures if I know that there are difficult to love people who are not entirely welcome because we don't know what to do with them under our current structures? Our response is the status quo.

I sometimes feel like I am on a horse tied to a merry-go-round. The horse was desperate to run, but it just kept going around and around, covering the same ground, doing the same thing. Eventually the horse turned to wood and now just mindlessly keeps going around and around and around. It used to be a horse, was originally a horse. But now it is an inanimate object just going around and around and around. It still looks like a horse (it's doctrine is correct) but is it inanimate (it's love is not correct). Maybe life can still be breathed into the wooden horse and it can run once again instead of being bound to the merry-go-round.

The captial C church needs new structures needs new love and inclusion, like the horse needs to get off of the merry-go-round.

McNair

Henri Nouwen on the contribution of the marginalized

In preparation for a class I am teaching, I was doing some research on Henri J. Nouwen. He was an amazing man. A professor and author who ultimately met Jean Vanier, and lived in the Daybreak community in Canada (one of the L'Arche communities). Anyway, in doing the research, I came across the combination of one of his sermons and a brief interview with him. I particularly point you to the inverview which is at the bottom of the webpage hosted by "thirty good minutes." I would encourage you to view the entire webpage.

In one part of the interview there, there is the following interchange.

Hardin: We don't see these people as fitting in, do we? We have a misconception about them that is very sad.

Nouwen: It is very true. Quite often people with handicaps, whatever their handicaps, are considered marginal in our society. They don't make money; they are not productive and all of that, but they are the real poor. Jesus said, "Blessed are the poor." Jesus doesn't say, "Blessed are those who care for the poor." Jesus doesn't say, "Blessed are those who help the poor." He says, "Blessed are the poor." That means the blessing of God is right there in their vulnerability, in their weakness, and that is what I experience. God gives enormous gifts to people who come to our community through those who are most weak and handicapped.

Now that is a fascinating read on the words of Jesus. Nouwen sees enormous gifts given to those who are with persons with disabilities just through their presence together. "The parts we think are unimportant are absolutely essential."

McNair

Why I need my brother with mental retardation

In the previous post (January 3, 2003) I questioned the spiritual maturity of those who would not know why they would need their cogntively disabled brother in Christ. This question was raised in reference to the 1 Corinthians 12 passage where it is written that those parts of the body which we may think are unimportant are actually absolutely essential. Perhaps you might not know yourself why your cognitively disabled brother in Christ is absolutely essential. Perhaps you might want to call my bluff.

Well, lets think about this in reverse. That is, rather than starting with the disabled brother and thinking about what he might bring as a body member who is absolutely essential, lets first think about what are absolutely essential components of the Christian faith. Absolutely essential components might be servanthood, faith, or love. I think most would agree that love is an absolutely essential component of the Christian faith. After all, the Bible says, "God is love" (1 John 4: 8, 16). Now we wouldn't look at love as being not important, we would see it as being absolutely essential. However, we might look at those parts of the body of Christ who teach us about love, or demonstrate live as not being important, most likely because we don't know what love is.

People with mental retardation, as a group I would say, love others pretty unconditionally. They as a group really do teach me about wat it means to love others by the way that they love others. They are truly excellent examples to me of how I should love my neighbor.

So lets put this together. Persons with mental retardation are thought by many as not important, not a priority for ministry. They are not considered a critical part of the body. However, they may be the best examples to others of what it means to truly love others, to love God. Therefore, as verse 22 states, "On the contrary, those parts of the body that seem to be weaker are indispensable..." Why might those parts be indispensible? Because they teach us about God. They teach us about God not because of what they cause us to do for them (although that may be a part of it). But more so, they demonstrate for us the most critical aspect of the Christian faith, and that is love. I need people with mental retardation in my church so I can learn about love by watching them love others. I learn about acceptance by watching the way they accept others. I may reject them, but in a very Godlike manner, they will accept me. I may reject them but in a very Godlike manner, they will love me.

I think the Church has not learned a significant lesson about what love is because partly because they haven't had the parts of the body of Christ which whould demonstrate what love is for them.

McNair

Interdependence

My daughter Amy just returned from the 2006 Urbana missions conference in St. Louis. She showed us a video of clips of the speakers, one of whom intrigued me with his comments. His name is Oscar Muriu and he spoke on the topic of "The Global Church." It is well worth listening to. The link to his presentation is here.

Several of the points he made about the global church touched me in reference to persons with disabilities in the church. He said, the purpose of maturity as a Christian is not independence but interdependence as we are a body. He gave the example of the liver saying "Now that I am all grown up, I don't need the lungs or the body anymore." His point being that as we grow we recognize our need for the rest of the parts of the body. A lack of need for all parts of the body is a sign of immaturity. Should the liver say it didn't need the lungs, we would correct it saying, "No, you just don't understand how things work in a healthy body." Our interaction would be like that with a child who will understand as he grows. Thinking one is independent and doesn't need the rest of the body is a clear indication of immaturity. With maturity comes the understanding of the need for interdependence.

Muriu spoke of his interaction with Western pastors. He would question them asking, "Why do you need the African church?" (he is an African pastor). Their response was that they didn't know why they needed the African church. This once again shows a lack of maturity, a lack of understanding of how the body works. Why does the liver need the lungs? To exchange gasses. Why does he liver need the kidneys? To clean the blood. There are reasons for why parts of the body need each other. The fact that I as the liver don't know why I need the lungs or the kidneys only points to my ignorance and my need for maturity.

Why do I need my cognitively disabled brother in Christ? Why do I need my mentally ill sister? Why do I need my paraplegic brother? If I don't know, as a point of maturity I should strive to find out. Perhaps the best way to get at the answers is to have that person in my midst, to work to include that person.

Oscar Muriu spoke of how the Western church appears to be in decline. I wonder, could it be in decline because it is not healthy because it has never included the parts of its body which would keep it alive? Muriu asked why the African church, for example, would want to drink from the poisoned chalice of Western theology if the result is a declining Western church? Great question. Could a part of the slow poison which is causing the decline of the Western church the lack of involvement of persons with disabilities? I am foolish enough to think it might be, because the body has been attempting to live without all of its parts. Parts that 1 Corinthians 12 states are absolutely essential. How can a body live for long without absolutely essential parts? Perhaps it would gain life if the absolutely essential parts were reattached. Could the church potentially even recover if the parts were remade body members?

Society is gradually on a path to destroy all the parts the church has rejected in the past. The world is killing persons with disabilities through abortion, infanticide and euthanasia. What type of church will survive if there are no people with down syndrome in the world? What type of church will survive if all quadraplegics are assisted with suicide? The world is removing the possibility of being the whole Body of Christ for us and we are complicit in a sort of slow, self-inflicted, church suicide. We are the liver who thinks it doesn't need the lungs.

And the world is willing to take our lungs away from us.

We loose people with disabilities in the world at great peril to the church.

McNair