Some musings about a Christian model of disability

Using the social model of disability we look to the effect or the impact that the environment has on individuals. It is arguable that the environment has never been fully accepting of people who are atypical. So the change that is being advocated is not a change back to a better day but a change to a new day. So to change the environment under a social model of disability is to create something entirely new. What we are about is softening environments that people with disabilities find themselves in. What we are about is changing environments so that they do not reflect negative societal attitudes or negative historical practices towards people who have disabilities, as well as limited physical notions of what it means to be a human being.
A Christian model would be a combination of the social model and something else. The social model component of the Christian model of disability would be that the environment would change such that people with disabilities might experience of what might be called social healing. Social healing is not a change in an individual in the way one would typically think when one thinks of healing and an individual with disability. Rather, social healing implies a healing of a sick environment such that it changes in its interactions with people with disabilities. The end result is that although those with disabilities have not changed they feel as if they've changed only because the environment is different. In some ways, social healing is a permutation of the social model of disability.
In a Christian model we are not only attempting to change the social environment, we are also attempting to change the way that individuals with disabilities see themselves. A Christian model would take the traditional biblical notions of human beings and just ensure that they are applied to people who have a difference known as disability.
In summary, however, a Christian model of disability should do several things.
First, in many ways the Christian model would adopt many aspects of the social model of disability in terms of saying that much of the difficulties faced by people with disabilities are not due problems that they have within themselves as much as they are due to the way in which society, the way in which the social environment interacts with them. The second aspect of a Christian model is to understand who people are who have differences called disabilities in relation to those who are more typical. A Christian model would also rely heavily on the sovereignty of God which is a difficult thing to do. To rely heavily on the sovereignty of God is to accept oneself as one is. This acceptance of one's self is not some syrupy, paternalistic pablum. Rather it is fully loaded, with God at the center telling all people they are a reflection of who He is and how He can be seen in the way he has made them. The Christian model therefore is not saying something or creating something new in the way that people with disabilities are understood. It is merely (but powerfully) awakening all to who people with disabilities are from a biblical perspective.
A third aspect of a Christian model of disability is to understand who God is. God is in charge. God is sovereign. Things will happen in our lives which will bring us joy. Things will happen in our lives which will cause sadness and discomfort. The Christian model would accept that these things come from the hand of a loving and just God and are a part of his plan not only for individuals but also for society. This is a critical aspect of understanding the Christian model of disability because this implies that there are purposes behind the things that occur in the lives of human beings. The notion of a sovereign God who is all-powerful coupled with the experience of disability in the world can largely lead to several potential outcomes. One is that God is in control, however, our sinful condition causes things to happen in the world that God would not necessarily desire, but that he definitely did set in motion in response to human sin. A second idea is that God directly causes disability in the lives of human beings in order to accomplish his purposes. These two options both implicate God as being behind disability. Now if God is behind disability then somehow it is a part of understanding his plan for human beings. This is an important understanding because disability would then imply purpose, it implies a lack of randomness, and it implies value in disability. If God is behind the cause of disability or if God is the cause of disability it implies that there is a purpose of disability that accomplishes something that he wants to accomplish. So therefore from a Christian perspective not only does the environment need to change, not only do biblical principles related the human beings need to be applied to those with disabilities, but we must also understand that there are purposes behind the things we see occurring in the lives of people in the world. This is a very difficult notion to swallow, to understand, to accept because of the suffering that we see in the world. It is only through faith that we can come to trust God in the midst of the difficulties that we see in the world. So a critical third aspect of the Christian model of disability is to understand who God Is, understand who God is in relation to man, understand the sovereignty of God and then put these things together in a way that leads us to faith and acceptance of God's purposes in our life.
The experience of disability significantly includes problems in each of these three areas. Society does not want to change. Society wants to continue in the way that it is currently functioning. Therefore one problem of disability relates to the social consequences of disability.
Human beings who have disabilities are either taught or come to believe that they have less value that they have some negative characteristic and as a result see themselves negatively, see themselves as not as valuable which is a second aspect of problems revolving around disability.
And thirdly people with and without disabilities do not believe God do not trust God do not understand God to any extent and therefore the purpose of differences in the lives of human beings is not understood. This is the third aspect of disability that is problematic.
A Christian model therefore would say the environment (the society) needs to change, the individual needs to change in their understanding of themselves from a biblical perspective, and understandings of God and who God is in reference to the experience of human beings need to change. A combination of these three changes, in society, in individual self perception and in understanding God will result in more positive outcomes are people with disabilities as they become more integrated into the larger society. If any of these areas are not developed we will continue to see the problems that we see. If your society continues on with its negative perceptions then the experience individuals with disabilities will continue to reflect the negative social consequences of disability. If individuals with disabilities don't see themselves in the way that the Bible would portray them then they may come to understand themselves as being of limited value of having no purpose as mistakes or defects or variety of other negative understandings of themselves. Finally if the individual with disability does not understand who they are in relation to God and who God is and they potentially see their life experience as random and having no meaning.
But with an understanding of who God is, there is the potential that they see their experience more as a part of a larger plan that comes from the hand of God potentially giving meaning to their lives and their life experience.

Texas plans to cut chaplains

Apparently, the State of Texas is cutting funding for chaplains. I received the following (from an email) and posted it here for you to take action should you desire.
McNair

Dear Ministry Friends:
Here is the ugly reality facing Texas:

1)The primary budget cutters do not value what Chaplains do. They have cut the entire department. These trained professionals manage the religious programs at each Texas Prison.

2)If they are cut, the program will have to be managed by a correctional officer or a secretary. (They will be pulled from their other duties -- little savings, huh!)

3)Chaplains also provide "Pastoral Care" for everyone in the institution. It is difficult to find a community of 500 people in America which does not have pastoral care. Such care will be very hit and miss without the Chaplaincy Department if it occurs at all.

4)All a Chaplain has to do to recoop his entire yearly salary is influence one prisoner a year to give up his/her criminal activity. The state will pay more on the person's next incarceration than is paid to the chaplain in a year.

5)The very effective Religious Programming which we now have in Texas prisons, does not happen automatically. Religious Volunteers must be recruited and managed. That is the task of our chaplains. Without them, the programming will become very uneven, if it is able to exist at all.


My friend Chaplain Xxxxxxx Yyyyyy reminds us of the importance of this grave matter and how time sensitive it is:

HB 1 has Chaplaincy listed as "zero funded" ... which means if it is not "funded" in House Bill 1 (the Appropriation Bill), and not "funded in Senate Bill 1( the Finance Bill), in a couple of months both the house and senate will appoint from the Senate Finance Committee and from the House Appropriations Committee about 3-4 from each body. They will form the Conference Committee which works out the differences between HB 1 and SB 1. It could be TOO LATE if chaplaincy is not "funded" before the conference committee. The Key is encouraging people (constituents) to get with their Rep and Senator and express how important it is to you and how it is good for Texas to continue the Chaplaincy Department with at least one chaplain at each prison. Say to them: "Don't Let Chaplaincy fail to get Funded on your watch" - "If we lose it here, we may NEVER get it back."

Action Plan:Contact by personal visit, telephone call, letter, fax or email your State Rep and State Senator.
1) The address of your State Representative is: The Honorable (Name), Texas House, P O Box 2910, Austin TX 78768-2910

2) The address of your State Senator is: The Honorable (Name), Texas Senate, P O Box 12068, Austin TX 78711

Also please contact your Statewide Officials:
1) The Honorable Rick Perry, Governor's Office, P O Box 12428, Austin TX 78711 (no email, must contact through his website)

2) The Honorable David Dewhurst, Lt. Governor's Office, P O Box 12068, Austin TX 78711, phone, (512)463-0001, fax (512)936-6700, david.dewhurst@senate.state.tx.us

3) The Honorable Joe Straus, Speaker of the House, P O Box 2910, Austin TX 78768, phone (512)463-1000, fax(512)463-1064 joe.straus@house.state.tx.us

Other people will be contacting the state officials about this issue. In this case "More is Better." We want to stack up communications on the Austin Desks about this issue. If you personally take time to contact these 5 people, you are standing up for our cause!

Do not forget to Pray for guidance as you make contact with those who represent you in State Government!

Does disability = suffering?

When a child is born to you, you have many expectations of what they will do of who they will be. Things you always wished you could do. Things that you never had the opportunity or aptitude to do. But children may "disappoint" because they were not the person you expected them to be. Perhaps you are a musician and your child gravitates towards athletics. Perhaps you are athletic and your child gravitates toward art. You are a person who enjoys being outdoors and your child likes nothing more than to sit and read. Some expectations die because they are exceeded in different ways. Some expectations die because they are unfilfilled, perhaps because the child hasn't the requisite abilities. The disconnect between expectations and reality causes a kind of "suffering" for those with the expectations although the child may be oblivious to the disconnect and "suffering" because unless it is communicated to them that they are not meeting our expectations, they grow, happy with their lives, their interests, etc.
Now to want an athlete and have an artist may bum you out a bit, but to desire a typical child and have a child with Down syndrome, for example, has thrown people's lives into total disarray.

Parents may feel great fear when a child is born with an intellectual disability. I know of mothers who have abandoned their children on this basis. I also know the abandoned individuals with disabilities as adults, many of whom may have an apartment in the community, hold a job and other than wishing they had more money (a common malaise) are quite happy with their lives. Those same mothers who could not face having a child with an intellectual disability, actually lived an identical life to the child they abandoned.

This leads us to the point of the way the child with Down syndrome, for example, is perceived. Yes they will make increased demands on their family in terms of supervision, in terms of not being able to have a decent job and so forth. However, in their own minds, they will see themselves as doing fine. With children with disabilities for a while at least, they may be oblivious to their difference because they know of nothing other than their life experience. As they grow and notice the differences in those around them, this may cause an internal dissonance or actual suffering created by the environment or how they perceive themselves in reference to the enviornment. Sure, many will desire such things as getting married, having their own home, etc. and depending upon their ability levels as well as the ability levels and creativity of those in their enviornment, this may or may not be a possiblity. The issue is the problem of equating disability with suffering particularly at points where they are not necessarily related.

Metaphorically,it reminds me of issues related to racism. For many groups of people at different times in different places, racism causes or caused them to experience discrimination and that causes suffering. It is important to state that there is not suffering in simply being a member of a racial group in and of itself (which can be a significant difference in making the comparison to disability in some of its forms). Suffering comes from being a certain ethnicity in the midst of a society that is discriminatory against that ethnicity. If I were to equate suffering with race X, you might correct me saying that that may be the experience of people of race X but it needn't be their experience. To always discuss race X under the heading of suffering would imply to the outsider that there is indeed something of a connection between race X and suffering that is unavoidable. Suffering is not the societally imposed consequence of being race X, it is simply an observed characteristic of being race X, because look at all the people in history who were race X who experienced suffering (albeit imposed by society). That does not diminish the reality of the suffering experienced by race X. It was and is real. However, if I take the next step and purposefully link race X with suffering, to some degree I may be complicit in that suffering. In the case of persons with disability, say Down syndrome again (who are arguably not physically suffering from their disability), people will then try to eliminate suffering they assume people with Down syndrome are experiencing using what they would call "humanitarian" means through such practices as abortion.

I do not want to deny that when people are suffering, they are indeed suffering. There are specific conditions that persons with disabilities might have that would cause physical suffering in a variety of different ways and I do not want to trivialize that suffering. There is also the kind of suffering that parents of children with disabilities might face which is also very real. Parenting children with autism, for example, can be incredibly difficult.

However, I do not want to project suffering onto people when they are either, 1) not suffering in their own minds, their own experience, or 2) are suffering because of something that I am doing that I can stop doing.

As stated, people may suffer when they have a disability for a variety of reasons. I may suffer due to my actual disability, perhaps it causes pain to me. I may suffer because of the disability of my child who has a disability as might my family suffer with this child. People may suffer due to the social consequences of disability to themselves or to their friends and family.

We must be careful, however, not to equate disability and suffering, particularly in situations when it is the social consequences of disabilty that lead to suffering. To equate suffering and social consequences indicates a giving over to societal effects of disability. Now I can understand that social consequences are the reality, however, at the same time if I refuse to equate suffering and disability on this level, perhaps I take the first step in changing what is considered common sensical and conventional wisdom. "Of course people with disabilities suffer from their disability" we say. But that is not necessarily true. Many people with intellectual disabilities, for example, are unaware they even have a disability let alone being distressed about it. I know of others who have physical disabilities who have come to understand themselves with their differences and are not suffering physical pain from their physical disability. They themselves have told me that they are doing fine and just wish "People would treat me like I am normal." We must be careful, therefore in equating suffering and disability and only talking about diability in the context of suffering.

McNair

Differences called disabilities

I just had a fun lunch with a colleague of mine. We discussed a variety of theological issues related to disability. One of the points that I was making was the intersection of the sovereignity of God in relation to disability. The question is whether God causes disability or whether it is just the natural order of things as a result of the Fall. We came away with different perspectives on this issues and had a wonderful time discussing them.

One conclusion that I drew from our discussion, however, is that as Christians we run the risk of characterizing "disability" in the way the world does, a largely negative fashion, and then will say that God could not cause this negative thing. We call a characteristic of people negative and then say that God does not cause negative things to happen to people, therefore it is not of God.

If society were to take a person with Down's syndrome, for example, and as a society say that people with Down's syndrome are wonderful, loving people (which they are, although society does not agree when you look at the rabid efforts to prenatally diagnose and abort those with the syndrome), would we now credit God with the creation of Down's syndrome and thank him for it rather then say it is caused by natural processes and God just allows it? I think the answer is that "Yeah, we might do just that." If in my limited understanding, I can only see negatives in Down's syndrome, independent of where the negative comes from, I therefore will not be able to imagine that God would be the author of Down's syndrome. It is difficult when people suffer, whatever the cause. However, if people experience suffering related to their condition only because of the way that society treats them because of their condition, I need to rethink any fear of "blaming God" for the condition.

Now of course there are disabling conditions that are coupled with pain and suffering. God's sovereignity could be discussed in these cases as well. However, these are something different. Sin of individuals in society is typically not the cause of suffering in this case.

Yet in the case of many types of differences, called disabilities by society, the social consequences may be worse than the condition itself. I find this is particularly the case in those with intellectual disability. I have little difficulty seeing intellectual disability (as it is labeled by society) as an aspect of the creativity of God, and therefore the sovereignity of God. I can see God's sovereignity at work in the beauty, the change these individuals bring to those around them.

McNair

More on integration

I once taught a Sunday school lesson on poverty to a group of people. In the group was a homeless man that I had known for several years who had been living on the street. Although the information that I had been sharing about poverty from the Bible was all good and truthful information as best as I could discern it, the presence of a homeless man living on the streets made me be much more circumscribed in the information that I would present. I almost felt as if I needed to be careful about the information I was sharing because there was an expert so to speak, a person living in poverty listening to me. The presence of this person changed the dynamic of the delivery of information from the person who was the instructor, changed the dynamic of those in the room in terms of their appreciating and understanding poverty and possibly impacted the individual living on the street themselves in that here was this person in a room full of people with resources that were talking about poverty and this dynamic had the potential to impact the degree to which this man continued to live or not live with limited resources. The people in the room had the potential to provide significant additional resources perhaps not to the degree that the man would no longer live in poverty but at the very least to the degree that the man's life would be much improved in terms of having consistent meals, in terms of having decent clothing, in terms of having social relationships, in terms of having the potential for transportation, the potential for involvement in families among other opportunities. So although these people living in poverty or homeless people are amongst us living potentially on the street, it's only when they find their way into our actual social spheres that they have potential to impact us and we have the potential to in some way impact them.

I believe the same is true with individuals with various disabilities. Initially our desire should be to bring them into the church setting for the same reasons indicated above relative to the homeless man. I cannot talk about the sovereignty of God in the same way potentially if I have people whose life experience would cause those around them to perhaps question the sovereignty of God in the room. That's not to say that I will change the truth of the gospel or the truth of the scriptures that I see relative to understanding the sovereignty of God, but perhaps there is a humility that comes with speaking of the sovereignty of God to a group of people who are affected by disability. I won't be so cavalier in just saying all we all need to trust God in the midst of our difficult times when I have an individual who is living life under the social consequences of disability and wonders about this sovereign God and why his life experience seems so different from my experience. This kind of connection, this kind of humility only comes with the presence of these individuals about whom we might be speaking. So, one of the benefits of inclusive churches is the way that the churches are changed by the presence of individuals devalued by society. It's difficult for a pastor to talk in the same way about people who have disabilities if the front row of the church is filled with people with disabilities. It's difficult for the pastor to talk about people who live in poverty in any kind of a glib manner if the front row the church is filled with people who are living in poverty. The presence of these people changes things in the way that material is delivered and the way that people interact with one another. Now I could take all the homeless people and put them somewhere else or take the people with disabilities and send them somewhere else in some sort of the segregated setting and think that it's identical to having them present with those who are not affected by poverty or disability but I am only fooling myself. And that is what groups will often do.

I remember in the town in which I live there was a meeting of community leaders to discuss the homeless situation. It seemed that there was an influx of homeless people coming to the community and the community leaders were concerned about what to do about that. One suggestion was to build a homeless center. This would be a place where you come to live for short periods of time where there would be food provided there would be places for showering etc. It would be a way of reaching out to the homeless people to assist them with their needs. But interestingly the answer to building this homeless shelter was that it should be built in the next town over such that the answer to serving the homeless people in my town was to build a homeless shelter in another town. Now no one was being fooled in terms of understanding why the homeless shelter should be built in a different town. Was there compassion and in building a homeless shelter? Of course there was. However, there was something else going on in terms of saying we want to serve the homeless people in a different town not in our own town and everyone in the room knew exactly what that was about. The same type of problem occurs when we take individuals with intellectual disabilities, for example, and say we want to serve them in a totally separate segregated setting. Is there compassion in serving individuals with intellectual disabilities? Of course there is. But at the same time in the same way as the desire to serve homeless people in a different city there is something additionally that is communicated when we say that we want to serve intellectually disabled people at a different time or a different setting apart from the larger church group and people may say that this is irrelevant but I think they're fooling themselves. If you were to come to my church and I were to say to you people with your characteristic, whatever that might be (particularly if it was a characteristic thought of negatively by society), go to a program in a different setting in a different time you would rightly be unhappy. Now if that characteristic was that everybody at that time spoke Spanish or everybody at that time were just women or were just men in terms of having additional special program offerings, that may be acceptable. However, if the only opportunity for participating was at a separate place and time you might wonder, “Why I can’t be with everybody else?” “How come I have to just with other people who have this perceived characteristic?”

In the same way that the presence of people living in poverty has the potential of having their need met through the resources of those in the larger group, the presence of people with various disabilities also provides the potential of their needs being met through the resources of the larger group. Now people will say I didn’t know of their need or I didn't know of their presence in the community and on some level I would agree as people can live their lives and have limited contact with people with particularly more severe types of disabilities. However, at the same time one must know of the presence of these people in the community and if they don't, the only way that they will know is if the environments that they are in are less segregated. So, segregated religious settings for people with disabilities in no way contribute to people moving out from an ignorance of the needs of individuals in the community. It's only by having people together in a setting that I began to become aware of the needs or even the basic presence of people with these characteristics in the community. Those who would segregate individuals with disabilities do little more than remove the potential of changing the lives of all of both those with disabilities who hold various resources and the lives of those without disabilities who hold various resources from coming together to the benefit of both.

A further problem with segregation of individuals with disabilities is that if the only way someone can be served is in some sort of the segregated setting or the only way that someone can participate is in some form of a segregated setting in a different time and place, that communicates to the larger community that there something wrong with these people and that they have no responsibility towards people with a particular characteristic and only furthers the negative stereotypes the society may have already laid upon these individuals. This is not something that the church wants to be a part of. If anything the church wants to be opening up the potential for relationships with people, particularly people who society has devalued. By the church segregating people, it contributes to the devaluation and negative stereotyping, actually affirming the negative societal attitudes towards people with disabilities. It actually exacerbates the negative social consequences of disability when there is no reason that it needs to do those things. It seems that those who segregate on the basis of disabilities are oblivious on some level to the lives of people with disabilities. Although people with intellectual disabilities for example may not understand the fact that they are being segregated, the higher functioning a person with intellectual disability is the greater the likelihood that they will desire things of a more typical nature. They will desire living on their own, they will desire of jobs in typical community settings, they will desire friendships with a variety of different types of people. If we as those who are not intellectually disabled understand these facts why we would we continue to play on the fact that those who are intellectually disabled do not understand these fact? Why would we continue to play on the fact that people, particularly with intellectual disabilities, don't know what they're missing when they are segregated when we were not intellectually disabled to understand what they're missing by being segregated and yet are unwilling to facilitate the integration that would potentially ameliorate some of the negative effects of self-segregation?

The scriptural principles that underlie this perspective are so obvious they almost would seem trite to lay them out. Principles like loving my neighbor or helping people who are devalued by society or reaching out to the least of these or the importance of every member of the body of Christ. All these most basic of Christian principles underlie and provide a foundation for the notion of integration of people with disabilities into the larger body of Christ. Which is why it's so surprising that there are so many who would move forward with programs of segregation in the face of these basic types of scriptural principles. But I understand the lack of understanding by many in the Christian world on these issues. A colleague of mine in talking about special education in Christian schools felt like he did not want to use the term special education because of the negative connotation it would have been Christian schools. Now this was not necessarily a philosophical orientation or a philosophical objection to the way that special education has developed in America or something along those lines. Rather, it was a gut level, negative feeling about the presence of children with disabilities in schools and that this notion was encapsulated with the term special education.

As I've said before in this blog the way to begin with integration starts with simply taking a position. The position is that people with disabilities belong in the church. But the next level of that position is that people with disabilities need to be integrated as much as is absolutely possible within the programs of the church. Once these positions are taken, once that philosophical decision is made the rest becomes logistics. How do I integrate people? How do I change the way that we do Sunday school? All those are good questions with myriad answers. People will come to me and say, “Jeff how they do I do integration?” My response is always “Has your church decided that they want the people there?” If the answer is yes then it's just a matter of coming up with ideas for how we can do integration, how we can be more inclusive. Simply coming up with ideas and trying them out. Those are all logistical issues. However, if the church has not made the decision that it wants the people there and not only wants them there but wants them included, then we can make suggestions all day long and they won't make any difference because the logistics will become too hard as the basic decision to want the people there has not been made. Once that decision has been made, that doesn't mean that the logistics become simple. However, it does mean that people are more willing to interact with logistics and different ways of meeting a need than they would be if the decision had not been.

McNair

The divide of theological certainty

I pray also for those who will believe in me through their message, 21 that all of them may be one, Father, just as you are in me and I am in you. May they also be in us so that the world may believe that you have sent me. John 17:20-21 (NIV)

The Christian world is divided in myriad ways, however, as I look at those endeavoring to develop ministry to persons with disabilities there are arguably 2 groups. There are what might be called the evangelical Christians and those who are the nonevangelical Christians. It is interesting to me how convinced members of each of these groups are that they are right to the exclusion of other Christian groups. I am sure that I am naive, however, if that is what the study of theology brings you to, unrestrained criticism of those with whom you do not agree, then I am pretty sure I want to continue to NOT know the things that those people know. (I would also say that theologians have been a huge disappointment over the years because they will argue over various positions, but they as a group cannot get the most basic of all things, love, right as it applies to loving those with disabilities. I stick to the position that we as a church have largely gotten things wrong from Sunday school to seminary. But I digress). When a Lutheran friend tells me that he is a believer in Jesus Christ, I am good with that. I need not find points of disagreement and discuss them. There is a haughtiness in theological certainty. Every denomination does this. Living near Loma Linda an adventist community, I noted a man driving with a bumper sticker that said "Saturday is the Sabbath, get it right." So lets find the one thing that I might not agree completely on with an adventist Christian, and make that the point of our discussion...I digress again. If I as a special ed professor am haughty and puffed up about what I know about special education, that is one thing. It is wrong for me to be filled with pride about the knowledge I have. However, it is something completely different to be puffed up with knowledge about the things of the Lord.

My point is that I have become aware that there are those in the Evangelical world who are doing wonderful things in disability ministry, and there are those in what might be called the nonevangelical world who are doing wonderful things in disability ministry but the groups are completely disconnected because of theological differences. They are even unaware of each other and this seems silly to me.

A friend of mine, well known in disability ministry circles once said to me, "Lets get the people with disabilities included in churches. Then we can figure out who is right." I couldn't agree more. I have mentioned elsewhere in this blog that Dr. Jean Vanier once told me that the church has been working on the rectitude of doctrine when it should have been working on the rectitude of love. These two sentiments really nail the issue for me. If we truly worked on loving others, we could perhaps get past our theological differences. However, we prefer to argue theological differences and forget about love.

Now don't mistake my position as anti-intellectual. I am a professor for goodness sake. But I am confident that the Lord Jesus would want us to be collaborative in our efforts to love our fellow man, collectively, as the church. Must I ignore the ideas of Henri Nouwen because he was a Catholic Christian and not a Baptist? Must I ignore the wisdom of Joni Eareckson-Tada because she is an evangelical and not a Lutheran?

I once had a pastor of a church I attended, a Church of Christ, who told me that if people were really serious about their faith and studied the scriptures that they would go to the Church of Christ. This has always struck me as the height of pride. It has always stuck with me that many with significant theological education think,

"If people were only serious about their study of God's word, then obviously they would agree with me because I know have studied harder than they, have gained greater insights than they, have a stranglehold on the truth when they do not."

Personally, I try hard to walk humbly (Micah 6:8) in issues of theology, because of all the brilliant people, Christian people, I have met in my life who were serious about their faith, really studied the scriptures and came away with different perspectives from one another.

Perhaps the love that must be learned to include people with poor social skills, or love those who make demands on me for my time could be the rallying point that would allow me to get past theological certainty. Perhaps I will release my stranglehold on my perception of the truth long enough to listen to someone else's perspective. Maybe I will learn something if, for example, after growing up in a Baptist home, going to a Baptist school, college and seminary, I listen to the words of a Nazarene Christian who loves the Lord.

McNair

You can't understand Jesus from the biased gospels

I recently wrote an article for a publication. In the end it was rejected, which is nothing new to me. Honestly? Not a big deal. I have written things that people like and things that they don't like. I have actually had an article rejected for lack of quality and then published by another journal with very little editing. So on some level it is a kind of a game.
But the criticism that led to the rejection of this most recent article I will fully embrace. I am proud of this rejection! On one level is is a clear indication of the anti Christian bias of many in the field of disability studies. I am sorry but that is just the way it is. Anyway, read the following which are a few comments from the rejection. The article, by the way, was supposed to share a Christian perspective on disability, particularly using the example of Jesus.

While I understand that the essay --- is written from an evangelical Christian faith perspective, I am concerned by a number of seemingly uncritical assumptions. One is that we can treat the gospels as more-or-less accurate historical accounts of the life of Jesus.

No bias there.

The evidence marshaled here likely says more about what the authors of these gospel texts thought about disability than about what the historical Jesus thought about disability.

So we cannot use the gospels as a way of understanding what Jesus thought because they are filtered through the gospel writers. I can only assume, then, that they do not want to understand a Christian perspective on disability.

Similarly, other faith claims are treated as more-or-less factual -- e.g., “Old Testament prophesies can be interpreted as foretelling the coming of Jesus”. On the same page, quotations from Isaiah are taken as descriptions of Jesus. The essay also takes a more apologetic tone than is typical in a scholarly context -- e.g., “These healings were evidences of Jesus being the one who had been predicted as the savior of mankind”.

Does one relate a description of their faith as simply opinion? The thing that you have dedicated your life to should be treated as opinion? I would not expect anyone of any religious faith to describe the principles undergirding their faith as anything other than fact. However, if you yourself are uninformed by faith, you will see all faiths as opinion. I can only suspect that the reviewer was someone who did not have a personal religious faith, or held the position that everything is relative (unless you say that you don't believe that everything is relative at which point you are rejected).
But to cover the reviewers tracks for the bias offered thus far,

At the very least, I would ask the writers to say more about their hermeneutics. But frankly, I am not sure this essay is of sufficient quality to warrant publication.

So perhaps recognizing that all that had been said thus far is falacious, the article was of poor quality. I have got no worries there. Criticize the quality, give me the weak areas as to why the arguments or writing are of poor quality. But don't provide biased uninformed arguments about religious faith in general and a total lack of understanding of the Christian faith and then cover your tail by saying something is of poor quality.
If I seem angry, I really and truly am not. I will dust this article off and publish it in an unbiased journal, probably with little changes. But this is a reminder to me of the field of disability studies and its hostility toward Christianity. My desire to to truly open minds. My disability studies students read the best of what the world of disability studies can offer because I want them to be exposed to different perspectives. I want them to be challenged. However, those of other persuasions want nothing to do with anyone who might bring serious dialogue and disagreement. It is those who see themselves as tolerant who are typically the most guilty of tolerantism.

McNair

Seeing people by their outward appearance

In the last several weeks, I have had conversations with several friends regarding people's outward appearance. The first revolved around one friends perspective that I should never look on outward appearances. He felt he could wear his pajamas to church and that should have no impact on the manner in which he was viewed by those around him. If they did have a problem with his appearance, it was their problem in not being Godly, viewing, even judging people on outward appearances and not looking on the heart as God does. We went back and forth on this, I in the awkward position of on some level defending some efforts to try to present myself in somewhat of a positive manner by my dress.
Now those of you who do not know me must understand that my outward appearance is not something that I worry about that much. I dress for comfort, buy my ties at the thrift store (since I was required to wear one in one work setting) and largely have a beard mostly so that I only have to shave 15% of my face rather than 45% of my face. Those who do know me would probably say I don't even work as hard on my appearance as I appear to be indicating here.
Yet I found myself in the position of trying to defend a notion of public appearance. My friend said it shouldn't matter and doesn't matter to him. I agreed that it shouldn't matter and doesn't matter to me, however, to those who might listen to me, who are not a part of the faith, potentially, it could make a big difference. So if I moved about the community in my pjs I am confident there are people who would not approach me or want me to approach them simply due to my dress. My friend understood and left it at that, but he could have brought up the example of John the Baptist and other Biblical characters who would have likely held his position.
Then another friend, a woman with mild intellectual disability was literally incongruous that I would care about outward appearance in any manner. If someone would judge others on the basis of what they look like, well, they are just being discriminatory. I shared my argument with her but she was as unconvinced as my other friend.
I have learned to listen to all my friends, but particularly those with intellectual disabilities because they will just about always tell me the truth as they see it. They are right that society judges on the outward appearance. They are right to question my willingness to participate in that form of judgment of people by the way that I dress or encourage them to dress. In their pure thinking where reasoning is "impaired" by disability, they are unaware of how society perceives them. On some level they don't care. I on the other hand, am brutally aware of how society perceives them and am at least partially aware that it is influenced by appearance. I am also aware, however, that they will be judged independent of their appearance. So perhaps they have it right whether them come to their understanding through logical reasoning or simply because they take Biblical warnings about judging others to heart.
The take home lesson for me, however, is that they really don't care about the appearance of others in a way I can hardly grasp. It goes back to the notion I wrote about in this blog several years ago discussing the saying "don't hate the player, hate the game." Well I will tell you in all honesty, that my friends with intellectual disabilities, for whatever reason, are absolutely unlike society in being able to see people simply as people without looking on outward appearances. Their lack of concern is breathtaking and refreshing.
I will refrain, in the future, from trying to convince them otherwise about how society sees them, or how they need to conform to society. Don't conform to the patterns of this world is what it says in Romans 12. My friends are beginning to teach me that lesson.
McNair

7 things every pastor needs to know about disability

1. People with disabilities are just people. People with disabilities are not an example of imperfection to the perfect. They are an example of imperfection to the imperfect who think themselves perfect.
2. The social consequences of disability are often the most difficult part of having a disability.
3. If I don't know your purpose, that doesn't mean you don't have a purpose. That means I don't know your purpose.
4. Once we decide that we want people with disabilities in the church, the rest is just logistics.
5. People with disabilities are indispensable parts of the Body of Christ (1 Corinthians 12:22).
6. The presence of people with disabiliteis should/will change the way we do things in the church.
7. The Bible applies to all.

McNair

The segregated church for people with disabilities

I have often referenced the 1 Corinthians 12 metaphor of the Body of Christ in this blog. It helps me to understand my relation to my brothers and sisters in Christ. We altogether comprise that body. Whether I understand it or not, I need you and you need me. For some reason, the parts of the body which I would consider not as important I am told are indispensable. They are indispensable to me and they are indispensable to the body itself.

Now when I consider my real body, I notice that the parts are connected. If I could in some way take my nose, cut it off and put it in a jar in a manner that I have devised to keep it alive, it would technically be a part of my body, but in reality it is not connected. I have a nose, it is in a jar over there. It is alive but it is in a jar over there. Now because I have separated it from myself, I no longer have the benefit of being a body with a nose. If I have separated it a long time ago, I may not even remember what my body was like when it was still attached so that I do not even notice it's absence. At the same time, my nose doesn't know what it is missing by not being a part of me. It is sitting in its jar, alive, thinking it has a pretty good life as a nose. I may even visit it on occasion,

"Hello my nose. You are a part of me but I keep you in this jar apart from me because I detect something about you, a characteristic that you have that makes me separate you. You bring odors into my awareness that I do not like to perceive so I have removed you. You are still a part of my body, but I keep you in a jar over here because the best thing for a nose is to be by itself."

In reality, my nose has no idea what it is like to be a part of the body and I have no idea what it is like to have a nose. The nose brings something to the body that no other part brings. How would I ever know that there is such a thing as a sense of smell, that there are aromas that are floating around out there in the air, if I didn't have a nose. So my nose never finds out what its purpose is because it is separated from me and I never learn about the sense of smell because I have cut off my nose and put it over there. To push this analogy a bit further, the presence of the nose allows me to appreciate beauty that I would never know if it were not there. I would never know the fragrance of a rose, or fresh bread baking or orange blossoms in the spring. Living in SoCal, I would also not be able to detect danger like the smell of a brush fire or a gas leak in my home. I would also not know that I need a shower because I have body odor, or smell of urine. I need my nose attached to myself to be a whole body.

All this to say that I cannot take persons with intellectual disabilities (in particular) and separate them into a separate church just for them. It is flat our wrong from an integration perspective, it is not scriptural using the metaphor shared by Paul above, and it is disables the church as a whole. I need all my body parts present for me to be an entire body. I cannot take some parts and pull them away from the body and think I am doing anything other than stigmatizing those whom I have separated. I have communicated to the larger church body that they cannot be a part of the body at the local church where those who do not have their characteristics attend. They need to be separated, for their own good and for ours as well, I suspect. We are doing them a favor those who have such programs would say.

But I am reminded of Leviticus 19:14.

Do not curse the deaf or put a stumbling block in front of the blind, but fear your God. I am the LORD.

Because of their intellectual disabilities, they do not recognize what is being done to them. They do not understand the harm that is done to them by being separated from all of the rest of us. This separation is part of the social consequences of disabilities which at times can be worse than the disabilities themselves that people face. Separation adds to the wounding of people with disabilities although they themselves may not understand it.

At the same time, the church does not understand the harm that is being done to it by separating people. We corrupt the understanding of people with disabilities for average church members by separating them. We support the ignorance of leadership when we separate people. Part of loving others who may be difficult to love because of social skill deficits and other reasons, is that I need to learn to love those people. I need to gain from the uniquenesses that they bring to the entire body.

But those who segregate, cut off our nose and put it in a jar. We think we can get along fine because we have no understanding of what smell is because it was taken away from us. We cannot even imagine a sense of smell as a body. What is it that the church is not experiencing, perhaps as beautiful and critical as a sense of smell because we exclude those with disabilities at worst and segregate them at best? There are those who remove this critical aspect of who we are from us and we actually thank them for it because sometimes we smell bad odors, and we would rather not have to address the warnings that such odors bring and change. So much better to remove those who make us uncomfortable under the banner of loving and serving them. I honestly doubt whether we do either when we separate, segregate and exclude.

McNair

Remembering Brad

A dear friend of mine, Brad Winden died this week. I knew Brad for probably 15 years. He was one of those people in your life that you can be honest with. We had the kind of relationship where we could be truthful with each other, get angry with each other but in the end still love each other.

For example, he asked me to be his payee for Social Security, but then fired me because he didn't like the way I constrained him in his spending habits. All the while, we were friends. He trusted me to the point of being the decision for medical interventions for him, which was not a small deal because Brad experienced many medical problems across his life. I recall the last time he was in the hospital he signaled to me vigorously that he did not want to be on a respirator even though it would be temporary and he would recover. I pleaded with him to leave it in but he insisted on having it removed. Ultimately the machine was turned off and as I stood there with him, he would stop breathing unless I would jostle him. Ultimately, he acquiesced to allowing the respirator to be used and 24 hours later he was able to breathe on his own and no longer needed it.

Brad was a strong willed man who told you what he thought which is one of the reasons I liked him so much. He was the proverbial "straight shooter." His honesty was refreshing.

He was also an amazing servant. He liked to wash my car, probably because living on a dirt road, it was gratifying to see it clean. But he and I had an ongoing joke about the warranty on his wash job. I wanted 6 weeks which of course was impossible, but made for lots of joking and accusations back and forth.

He and I also referred to each other as turkey. He is the only person in my life that I have ever called a turkey and ever will. He would answer the phone "Gobble Gobble" as would I and we could call each other turkey across a crowded sanctuary using sign language.

The love of his life was Lisa and I will not go into detail about the incredible ways that he served her, but let me just say that few men would love and serve their wives in the way that Brad served Lisa. It was very difficult for him when she passed away and he and I would often talk about their reuniting in heaven.

His last evening here on Earth I was with him. He would at times come to classes that I was teaching and share his experiences with my students so they would have a greater understanding of life with a disability. He would always have a profound impact on the students. I asked him if he would like to speak to the students the Sunday before. He looked a bit down and I thought it might cheer him up to meet some new people and have a meal out. That same Sunday, the members of Light and Power gathered around him and prayed for him because he seemed a bit down. At the Wednesday night class, he was a bit tired, but enjoyed the students and they him. He seemed envigorated. After class, we stopped at Starbucks on the way home; he got a hot chocolate. We drove up to his apartment, and although a bit shakey, he used a walker in recent days because he had become a bit unsteady, I assisted him up the steps and into his apartment. I remember I was a bit surprised at the difficulty he had in climbing those 3 steps to get up to the front door. I thanked him for speaking to the students and told him I would see him possibly on Friday when we were planning to have coffee/lunch with Mark. He said he would call me. My last words to him, perhaps the last words he heard on earth, were, "God bless you!"

I will forever be indebted to Brad for his friendship.

I will also be indebted to him for what he taught me about being a person living with disability, fighting human services for services, and being a man of faith who lived with joy in the midst of great physical suffering and medical intervention. He didn't sit me down and say, "Jeff let me teach you about these things." But he taught me nonetheless through his life. I know that he had this effect on many others as well.

He will be missed.

McNair

"I went to the bachelor party!"

This past week, my son got married. It was a wonderful time. All of his friends were there which was one of the most fun aspects of the wedding, reception and events leading up to the wedding.

One of his friends is a man that my son has taken out for lunch many times. They call each other the "Chipotle buddies" after their favorite restaurant. Anyway, as I watched my son's friend Mark at the wedding, I couldn't help but reflect on the powerful statement his presence meant. My son, basically communicated to all who attended that Mark, a man with intellectual disabilities was worthy of his friendship. He was specifically invited to attend the wedding because he was a person of value to my son, and once again, worthy of friendship. I wonder how many of the people in attendance noted that he was there, asked why he was there (surely he was just someone in the family who had to come, not someone totally unrelated and simply a friend of the groom) and were perhaps surprised to find out who he was and why he was there.

It was fun also, because the night before we had a big barbeque/party at our house and Mark was once again invited to that celebration. He participated in the various activities of the evening, ate too much like the rest of us and stayed up late. In fact on both nights, he didn't get home till after midnight. He went around the following Sunday telling everyone that he had been to Josh's bachelor party. Although not entirely true, he was with all his friends and family.

Not to make too much out of this, but Mark as a 50 year old man had been invited to the first wedding of his life (see Wolfensberger 2000's wound #15) and had been given the socially valued role of "friend" at a wedding. But not just any friend, a friend of the groom who had been specifically invited by the groom to be at the wedding. Might be a small thing to you but this was a very big deal to Mark and to me as well. I wish more people with intellectual disabilities in particular, could experience the role of "friend of the groom" at a wedding.

McNair

"Even though I walk through the valley of the shadow of death, I will fear no evil for you are with me"

This was the second part of the 23rd Psalm that I was to report on to our group. We were studying Keller's, "A shepherd looks at Plsam 23."

As I went through this book, I was impressed with the idea of the sovereignty of God. That is something that is very difficult to accept in my life, particularly when I don't understand what is happening to me. In a Proverbs 3:5 way, I lean on my understanding. So much about disability and the acceptance of disability in oneself or one's family is about accepting the sovereignty of God. As someone who does not face a significant disability myself, or in my children, accepting God's sovereignty is probably easier for me. I do not wake up many evenings with my child with autism. I don't sit at the beside of my daughter with cancer and wonder about our future together. I don't face alzheimers disease in myself or my spouse and worry at the changes life has in store for us. I don't have these experiences at the moment in my life, but it is my prayer for myself as it is for those facing those life experiences now, that they will lean on God and trust him when the reasons cannot be understood because he is indeed sovereign.

In the book, Keller talks about why sheep would be walking through dangerous valleys. Sure, one might get lost and wander into dangerous places, but the point here is that the shepherd is taking the sheep to greener pastures, to a better place for them. So in reality, the shepherd is leading the sheep through the valley of the shadow of death. The shepherd took them there. And death is not imagined, it is there casting a shadow. However, the shadow is cast on the sheep and the shepherd. The shepherd is there with the sheep as he takes them through the valley to the greener pasture. This is an easy principle to describe, but it is perhaps the most difficult of all principles to live, to accept. Paul promises that in all things God works for the good of those who love him(Romans 8:28). That is encouraging, but that doesn't make life any less difficult. It will hopefully strengthen my faith such that I will trust in the Lord with all my heart and not lean on my own understanding. But having faith in difficult situations of life, like the facing of disability is hard.

Like a shepherd taking the sheep to a better place, a greener pasture, I trust God's sovereignty in the most difficult of sitiuations that life throws at me. Joni Eareckson-Tada is the greatest example of this to me, in terms of a real flesh and blood person. After 40+ years of living with quadriplegia, she is diagnosed with cancer. What is her response?

"For years I have hoped that my quadriplegia might encourage people struggling with cancer...now I have a chance to truly empathize and journey alongside, affirming that God's grace is always sufficient for whatever the disease or disability."

Amazing


On some level, that is what the green pasture looks like when we get to the other side of the valley of the shadow. Through faith in God and her trust in God's sovereignty, Joni is fearless. Of course she fears, she is a human being. However, her response is to trust God because she understands that He is leading her!

The experience of disability is dead in the center of God's sovereignty and the need for faith. I pray for those whose experience with disability challenges your faith. I also pray that each of us will come alongside of those facing the difficult aspects of the experience of disability to reduce the social consequences, to reduce the discrimination, and to become a part of the process of the church (meaning Christians) becoming the green pasture that people desperately need.

McNair

"He makes me lie down in green pastures..."

This past week, I was a part of a group studying "A shepherd looks at the 23rd Psalm." I was assigned chapters 3 and 7 in the book and thought I would share what I learned here.

Chapter 3 takes the part, "He makes me lie down in green pastures."
On page 33 of the book, Keller says that in order for a sheep to be willing or able to lie down, they must be free of fear, free of friction with others, free of pests and free of hunger. If these conditions are not met the sheep will not lie down. More on this later.

He also talks a bit about the idea of "green pastures." He says that pastures can be existing/natural, or they can be made or prepared by the shepherd. At least part of the notion of green pastures for the Christian is the idea that God and his church are the green pasture. My relationship with God is more of the natural one, where no one needs to do any preparation. I can approach God on my own, and feel the refreshment that comes from a relationship with him. The church on the other hand, is more of the prepared pasture. It has to be made green. As I thought through this, I reflected once again on the research that indicates that parents of children with disabilities feel supported by their individual faith (the natural pasture) but not by their corporate faith (the prepared pasture, or I guess the pasture that has not been adequately prepared).

Keller goes on to talk about how a pasture is prepared (p 41). Once again as He went through this, I thought about the parallels with the church relative to people with disabilities and their families and how the church needs the same types of preparation.

Scriptural verses came to mind...
-Clearing of rocky land: Jesus did a lot of this (see Luke 6:4, 11:39-44 and Mark 7 about corban)
-Tearing out brush, roots and stumps: Matthew 15:13
-Deep plowing and careful soil preparation: John 9:3-5
-Seeding and planting special graines and legumes 1 Corinthians 12:22
-Irrigating: 1 Corinthians 1:25-30
-Taking care of crops: James 1:27

In order for the church to be a green pasture for people with disaiblities and their families: a place of refreshment, relaxation, support, without fear, friction, pests or hunger many changes need to happen.

We must remove fear, particularly fear of rejection, judgement and social isolation. No one who fears what might happen at the church will ever come to the church let alone consider it a green pasture.

We must remove friction due to intolerance of social skill differences, the program changes that might be required, and the general flexibility that must happen.

We must prevent/remove pests. The pests of state agency/school problems, lack of understanding of the behavior of people with intellectual disabilities, mental illness or autism, and understand the differences of life experience if I am a person with disability or a family member.

We must address provide opportunities to address the hunger of those who would come in areas of worship, Bible study, membership, acceptance and the provision of respite.

The more we endeavor to do the above, the more the church will actually become a green pasture. In a previous post, I commented on the phrase I read in a curriculum that states, "Acceptance does not change the reality of one's condition." Creating a green pasture is the creation of an environment that changes "the reality of one's condition." In particular by addressing the social consequences of disability. At least socially, the church can become the pasture that those affected by disability long for.

McNair

The "reality of one's condition"

I was recently reading from a curriculum on disability. Under the heading of "Grief and Depression" was the following statement. "Acceptance does not change the reality of one's condition." As I pondered that statement, for some reason it didn't sit well with me.

As I think about the "reality" of a disability condition, I wondered about the reality functionally and the reality socially. I think that one can actually change the reality of one's condition. The reality functionally has been changed through curb cuts, TDD, and electric wheelchairs. Universal design has at times changed the environment such that the functional reality has indeed changed. Being someone with quadriplegia no longer means that I must live my life relegated to a bed, or unable to move about the community. Through creativity of people, the functional reality of many aspects of disability has changed and increasingly, people experiencing needen't accept many of the functional aspects of disability. Clearly, many aspects may never change. However, many aspects are truly due to an unimaginative environment.

The social reality is equally difficult to change it seems. How does one change the enviornment such that it sees people first? I have friends who have intellectual disabilities, yet they hold jobs, live in their own apartment, receive support from a variety of people, and generally enjoy their lives. Yet they are not seen as typical because the environment imposes a social reality on them that they have great difficulty escaping.

Clearly there is overlap between social and physical reality so that the distinction might be somewhat arbitrary. And the negative effects are clearly cumulative.

However, we as the church should be on the forefront of changing the reality of a disabling condition.

If I babysit for a friend's child with a severe disability, I have changed the reality of disability for those parents.

If I take a man with an intellectual disability out for lunch, I have changed the reality of disability for that man.

If I make a previously inaccessible building accessible, I have changed the reality of disabilty for anyone endeavoring to enter that building.

If I seek out persons experiencing various disabilities in an effort at evangelism, I change the reality of disability for those people regarding the Christian church.

Some aspects of disability must be accepted. Some aspects of disability need not be accepted if only the environment, in particular the Church would be what it was meant to be.

McNair

Garbage in the heart

Yesterday was the first day of the fall 2000 and semester at California Baptist University where I teach. At one of the meetings I was sitting with a colleague of mine Dr. Keith Walters. We were thinking through some issues related to disability. The focus of the faculty training after coming back from summer vacation was the issue of diversity. In the process of one of the meetings where we were discussing diversity, disability came up as an aspect of diversity that is not necessarily addressed. When I mentioned the issues that the church faces relative to individuals with disability, some of my colleagues were absolutely astounded. They couldn't believe that the types of things I described would actually be the case within the Christian church. Later in sitting down with Keith he made the comment that we, as Christians, are totally unaware of the garbage in our own hearts. Now to me, on some level it is a gift from God that I am unaware of the garbage in my own heart. If I were actually aware of the garbage, the specific types of garbage, the amount of garbage in my own heart I would probably just sit in a corner somewhere and cry at my despicable state. So God in his grace perhaps protects us by not fully displaying to us our entirely sinful condition. He conforms us gradually to this image.

Another aspect of this is that I have observed is that often times people will carry the façade of a behavior or language that they know is acceptable. They then go through their lives and think of themselves as good people doing the right thing etc., because they are never confronted by anything that causes them to necessarily divulge what is actually in their heart. In relation to disability, I have often found that the even though in communities and individuals there is an appearance of the smooth kind of surface where everything is fine, running underneath the surface are either negative attitudes or attitudes which reflect socially constructed notions of disability in our society. Then what periodically happens is that the community or individual is confronted with some traumatic event, some demand for change on their part or some other intrusion on their smooth surface that causes them to actually live out the exterior that they appear to have. When this confrontation comes, what happens is that the negative attitudes, the negative perceptions, the social constructions that are under the surface bubble up to the surface and we find out what is going on inside a person's mind or heart. We see the garbage that Keith was talking about come to the surface.

At times when the negativity comes to the surface, it may just bubble up in a little comment or something similar that is barely perceivable. At other times, however, it's a full-blown geyser of negative attitudes that explode forth and we are shocked at what is actually going on inside of a person's head. In the church, one of my desires is to confront individuals, groups and organizations with the presence of people with disabilities such that these underlying hidden types of things which are floating below the surface may come to the surface and therefore be addressed. It's easy for me to say I love all people. Or as my students will often find when they interview pastors relative to the people with disabilities at their churches, “We would welcome people and love people if they came to church.” That's an easy thing to say because the people are not coming and so therefore these churches are not actually being confronted with the presence of people with disabilities and the changes that their presence might cause to occur.

These confrontations which cause our character to come to the surface may be evidenced in the form of temptations. We see in the Luke Chapter 4:1-13 the story of Jesus being tempted in the wilderness. His integrity and faith in God comes out through the temptations that are thrown his way by Satan. We find from that story, that the exterior that we observe in Jesus is actually supported by an interior life of faith, prayer and of study of the Scriptures which allows him to respond the way he does.

But in many churches I sometimes find that the exterior that we see is an exterior that has not been confronted by the demands that people with various disabilities might place on the church. If the church, for example, never has an individual who uses a wheelchair present, they are never forced to find out what's below the surface relative to having the commitment and wherewithal to make the church accessible. If the church has never had a child with an intellectual disability in the church, then the church may never have been confronted with what faith development in a Sunday school class for example might actually be. Instead it is living on in practices which are much more knowledge oriented. If the church is never confronted with an individual with a severe form of autism, they may never have to come to grips with what inclusiveness might require them to do relative to the Sunday morning service or other programs within the church. As a result when people with autism do show up, the negativity that's hiding below the surface bubbles up. Sometimes it is evident in comments that your child can stay if you keep an eye on them the whole time. It bubbles up in outright rejection where parents are told they need to find a different place to worship or comments that there is no longer a place for you here.

But the upshot of these confrontations can be good though they're not necessarily beneficial to the families who experience them. They can be good for the church because I suspect even though negativity may be bubbling to the surface, at some level those who are expressing the negativity must be saying to themselves, “This is not right” or “This negativity is not what I should be engaging in” or” I am not reflecting the example of Christ through this negativity.” So the confrontation of disability once again awakens the church or individual Christians to some of the garbage in their own hearts relative to acceptance of people that have not been accepted in the past. And if this garbage in the heart is actually exposed to view either for the individual to view themselves or for the group to view, there is the potential that changes might come in the individual or in a group as a result of seeing that garbage.

I at times have been in a situation where I have confronted a church or the leadership of churches regarding heart garbage relative to individuals with disabilities and their ongoing rejection. Unfortunately, sometimes those in churches cling to the garbage in their heart rather than saying when this garbage is exposed, “This is something that I should not be doing” or “This is something that I need to change.” I would like to say that more often than not there is a spirit of repentance and a desire to want to know what to do, a desire to want to figure out how are we can be more responsive. But it is definitely not always the case.

McNair

Lorna's faith story

Please note the new viedeo below which is a woman's faith story from our Light and Power class. I never tire of hearing about how someone finally finds a church home who did not have one, whether or not they have a disability. But that they struggle to find a home is still an indictment on the church. Very sad.

If any of you who read this blog are available and interested, we are having a celebration of persons with disability at my church this coming Sunday, 8/8/10. Should be fun. I will have a very small part of the service but happy to support those who are putting it together. We will also be having our typical Light and Power class, so stop by for that as well. The church is, Trinity Church in Redlands, CA. 1551 Reservior Rd. Here is the website. http://trinityonline.org
Our church is not perfect by any stretch of the imagination, but we are trying to be obedient in the area of removing exclusive practices as they relate particularly to people with disabilities.

So come by if you are available.

McNair

Social consequences of disability

I have written elsewhere in this blog about what have been called the "social consequences of disability." That is, how does society respond to the fact that someone uses a wheelchair or has autism, or has an intellectual disability. See for example this posting Social Healing or here Social Role Valorization and Wounding.
Both of these postings provide great detail about the social consequences of disability.

I have been thinking about social consequences in reference to 2 Corinthians 12:10. It reads like this in the NIV.

That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

This is the closing statement of a section where Paul describes the "thorn in my flesh". I am not a Bible scholar, but I don't think it is too out of bounds to think about the experiences Paul had in his life related to the quote above, at least in part due to his "thorn" his disability.
It is interesting to read the list of the 4 experiences that fall under the heading of weaknesses and think of how his experience of disability at least in part is reflected in those weaknesses.

In insults. There are so many forms of insult that persons who are affected by disability experience. Of course there are the out and out verbal insults, however, there are also the jokes, the mocking and the just general treatment people will receive simply because of their differences.

In hardships. Hardships are part of life for people with disabilities, just about independent of the type of disability one has. Many hardships are avoidable if society were only different.

In persecutions. There is much in literature which describes the experience of persecution that people with disabilities experience. Should they be Christians, they can only expect that experience of persecution to increase. Persecution is without a doubt a social consequence of disability.

In difficulties. Be they intentional or otherwise, the experience of disabilty is an experience of difficulty. One need only look at the various systems designed to help by governments and societies to get a first hand picture of difficulties.

So Paul understands the experience of living with the social consequences of disability. But his response to this is amazing. "I will boast gladly about my weaknesses, so that Christ's power may rest on me." That is his response to God's telling him, "My grace is sufficient for you, for my power is made perfect in weakness."
That is my prayer for people who are experiencing the insults, the hardships, the persecutions and the difficulties leveled against them because of differences they have in their lives which have come to be called disabilities. My prayer is that God's power would be evidenced in their weakness, be perfected in their lives through their weakness.
Let me also say, however, that my prayer is that we all will work to lessen the social consequences of disability to the degree we are able. Sure, God's power can be seen in the weakness of persecution, but I needn't be the agent of the persecution or hardship or insults or difficulties that people face. It could be that part of the grace God dispenses in the lives of persons experiencing disability is what I do in attenuating the social consequences.
But it should comfort you if you are reading this entry and you experience a disability that Paul, writer of books of the Bible, great man of faith, knows something of your experience, and in the midst of it, found strength to face the difficulties of his life through the grace of God, even seeing God's strength through his weaknesses to the point of making that a cause for boasting.

McNair

Community Based Isolation

I recently had a meeting with a friend of mine and we were discussing the problems faced by people with various disabilities, particularly intellectual disabilities, who live in group homes in the community. The friend I was talking with said that the people are living in “community-based isolation.” That is, although they are physically integrated into the community they are definitely not socially integrated into the community. In reality they seem to be in a form of protective custody in the community. It's not unlike the way that law enforcement will take an individual who they feel is at risk of harm from and put them in a form of protective custody. This could occur by putting them in a jail cell or in some sort of a hotel room with guards but the idea is that you do not want any harm to come to the individual so you put them in a form of protective custody. The protective custody is fine if your goal for an individual is just to keep them from harm, but a person's life while they're living in protective custody is hardly a life. They cannot move freely about the community and they have the things that they can and can't do determined by those who are facilitating protective custody over them.

So take the protective custody example and move it over to individuals with disabilities living in group homes. The way that this custody is often acted out is that if I am a person who does not like sugary soft drinks I will keep those in my protective custody from having sugary soft drinks. If I'm a person who does not think that participating in a religious group is of importance, I willl not allow you to participate in a religious group because I don’t think it's important for you either. So often with protective custody is not just protection but also as the imposition of values of those who are facilitating the protective custody.

The lives of people living in group homes in the community should never have been designed to be a form of protective custody. Now as I have stated elsewhere in this blog I clearly understand that people with disabilities, particularly intellectual disabilities, often are the victim of people who would take advantage of them and try to use them for whatever their purient interests might be. But while I don't want to just give those who are bad people complete access to do willy-nilly whenever they would choose to do to individuals with disabilities, at the same time I don't want to be protective to the point where those with disabilities have no life because they live in a form of protective custody. They live in a form of community-based isolation.

There are those who think that because someone is physically living in the community that they are integrated in the community but nothing could be further from the truth. On some level what we actually have are little institutions in the community that are called group homes that are either so highly regulated people are living in protective custody or the people who run them are so afraid of litigation that they will not allow a person to do anything that could be in even the remotest way perceived as dangerous because they don't want the legal ramifications of a person having some sort of a problem as a result of access to the community. The end result is that people who are adults with disabilities are treated as children, protected as children, protected as you would protect a little child down to determining what they can or can't do who they can or cannot be with and so they live the life of a protected little child. But these individuals are adults. Adults sometimes do things that they shouldn't do. They smoke cigarettes, they drink too much coffee, they may go places that potentially they shouldn't go. A part of being an adult is the dignity of risk. A part of being an adult is making some decisions for myself which other people may or may not agree with.

I'm sure all of us have at one time or another spoken to someone who smokes cigarettes. Cigarettes have been determined to be bad for your health. However, do I have the responsibility to take the cigarettes from an adult, if a person lights up a cigarette should I pull it out of their mouth and say you shouldn't smoke? The ability to smoke is called freedom, and throughout our history, people have literally given their lives to protect our freedom. Well if I do grab a cigarette out of someone’s mouth, I may have to face the ramifications of that which will likely be a hostile response from the person. I can try, but I really don’t have the right to regulate someone else’s life with my own personal opinion about what that person should or should not do. However because a person has some form of disability those typical societal rules which would not allow me to regulate the life of another people another person are totally thrown out the window and I feel like I have the absolute right by virtue of the fact that a person has a disability to regulate their lives in areas of safety in terms of access to people in terms of even simple like choices like of what to eat at how late to stay up at night. In reality, this is mostly because of the effect their behaviors may have on me and my convenience as the person who is supervising the living arrangements, even though it's all done in the name of safety, in the name of protection, in the name of what's best for an individual. Even stating it in that way it's obvious to see how paternalistic these notions are. However, there is a big difference between what I think a person should or should not be able to do and what a person is able or not able to do.

So once again I am not advocating that all all notions of safety or regulation be thrown out the window. However, at the same time we must recognize that a life lived in protective custody is not a real life and what we're trying to facilitate is that people, to the degree that they're able, have a real life. And when you have a real life that does that mean that you will never be hurt. Of course not Actually the fact that you are hurt may indicate that you are living a real life. All of us disabled or not have at one point or another been hurt in a whole variety of ways whether we have been physically hurt or emotionally hurt or whether we've been victimized on some level or another, by virtue of the fact that we are living a real life. None of us would deliberately desire harm for persons with intellectual disabilities. But the only life where one does not experience any harm is by sentencing a person to protective custody. This sentences a person to not having as real a life as they possibly might have.

Now this blog is about disability and Christianity. So the major focus here is helping people to have as real life as possible by allowing them to have access to the church and the programs of the church. Are there bad people who go to church who could potentially victimize someone with a disability? Of course there are. But the lion’s share of people the majority of people are not those types of people. There is also the safeguard that people who are attending churches are looking out for one another to make sure people are safe. So can people be victimized? Of course they can. Yet at the same time the risk, the dignity of risk that goes along with access to these types of settings is the kind of thing that will facilitate a person having a real life.

McNair

Please keep Joni and Ken Tada in your prayers

This morning, the Joni and Friends website shared that Joni has been diagnosed with cancer. Please visit this website for the full letter drafted by Joni.

In the letter she states,

Please pray that the upcoming tests, surgery and subsequent treatment will be successful (thankfully, my quadriplegia has no bearing on either the surgery or the treatment; I'm like any other woman with breast cancer -- I simply want to focus my energies on getting better).

Of course, I believe that God can and does heal and I covet your prayers to that end. Most of all, please pray that God will pour out grace-upon-grace on Ken and me.

God has used and continues to use Joni in my life as an example of trusting in the sovereignity of God. I would wish to know and trust in God as Joni has learned to do throughout her life, but I would not wish to face the trials that she has faced to give her complete trust in God. When I waver in my faith or in my trust in God (I wish that were less often than it is) I will often think of her and am encouraged.

I must also tell you that through some opportunities I have had to meet and speak with her, she is real. Real about her life experience and the impact it has had on her. She is not some pie in the sky purveyor of platitudes. But someone who has lived the raw edge of life's challenges, coming away with a dogged desire to trust God, and look on her significant challenges as a way to encourage others. Her faith is such that I suspect she received the diagnosis of cancer anticipating how God would use it in her life to His glory.

Please keep Joni and Ken in your prayers as they move forward into the unknown of cancer. Cancer may not be known to them, but God is known and as real as quadriplegia, even more real. I leave you with one more quote from her letter.

For years I have hoped that my quadriplegia might encourage people struggling with cancer… now I have a chance to truly empathize and journey alongside, affirming that God's grace is always sufficient for whatever the disease or disability. (Joni 6/23/10)

McNair

"Celebrating the past: Honoring the legacy of Eunice Kennedy Shriver and Senator Edward Kennedy"

That was the title of a presentation given to the entire membership this morning at the AAIDD conference. The majority of the presentation centered on Mrs. Shriver who was an amazing advocate for persons with intellectual disabilities in America. Her brothers President Kennedy and Sen. Edward Kennedy are the ones often credited with the actual programs and legislation that affected individuals with disabilities, but as one of the presenters indicated quoting Sen. Kennedy, "It was all Eunice!" I doubt that is entirely true, but it was clear nontheless from the presentation that she was the momentum behind much of the policy that impacts people with a wide variety of disabilities. For a more complete discussion of her contributions, I would refer you to an article by Dr. David Braddock entitled, "Honoring Eunice Kennedy Shriver's Legacy in Intellectual Disability" published in the journal, Intellectual and Developmental Disabilities, vol 48, number 1, February 2010.

There were several things about the presentation about Mrs. Shriver, however, that I was unaware of. I plan to become a student of her life in the future, but these two things were quite remarkable.

First is that she was a very devout Catholic. Steven Eidelman one of the presenters today who knew Mrs. Shriver personally, indicated that she would attend Mass twice a day, rain or shine, going to a little church near where their offices were. I love knowing that someone having such a profound impact on our country in the area of disability, was at least partially motivated by her faith in God. I wish that had been explored much more in the presentation, but it was mentioned and described as a critical part of who she was.

The second was that she was staunchly pro life. Another of the presenters, Deborah Spitalnik who was clearly not pro life, even apologized for giving Mrs. Shriver that label. Obviously, in the circles she runs in, to be called pro life is to be denegrated. How difficult for her (Spitalnik) to reconcile the life of and contributions of Mrs. Shriver with her pro life stance. She concluded her comments with a comparison of Sen. Kennedy and Mrs. Shriver as being loving family members on opposite sides of the issue and how wonderful that was. But there were the political jokes or innuendo about Bush or others who might disagree with her. Yet she herself could not even use the term pro life without an apology for characterizing Mrs. Shriver that way.

To me, it is not Mrs. Shriver who was inconsistent in her position towards life and intellectual disability, it is those like Spitalnik who are inconsistent. How can someone be in an organization like AAIDD which supposedly is all about what is best for persons with intellectual and developmental disability and advocate for the taking of their lives via abortion. This has been the case in the past as well with the AAIDD stage being given to those who would "prevent" intellectual disability via abortion. To me it is painfully inconsistent.

But praise and thank God for the life of Eunice Kennedy Shriver. She made her mark on the country and the world as well, bettering the lives of persons with disabilities in myriad ways. To quote the closing paragraph of the Braddock article mentioned above,

So, in every country across the globe, in every city, town and remote village - and she touched almost all of them during her life - let the word go forth to honor the legacy of Eunice Kennedy Shriver.

McNair

AAIDD Providence

I am currently at the annual meeting of the American Association on Intellectual and Developmental Disabilities. I am the incoming president of the Religion and Spirituality Division of the organization and have been enjoying interactions with old friends and have been making some new friends.

Today, I attended a session by Dr. Robert Schalock, a very important researcher in the field of disability. He was the moderator of a session about the Intellectual Disability: Definition, Classification, and Systems of Supports (Eleventh edition) The AAIDD is the organization which defines intellectual disability, which is no small task as it impacts people in terms of receiving services and legal responsibilities. I found it a very informative session, and those in attendance were a "who's who" of the field of intellectual disability for the past 20 years or so.

Two very positive things jumped out at me from the meeting actually 3. First, I plan to purchase the book noted above. I think it is critical to understand the direction the field is going in, and particularly relates to my interests in policy development for the church. Second and related, there seems to be a movement in the definitions towards more of a community focus, and a understanding of intellectual disability on the basis of services needed versus past notions of assessment and identification. This has always seemed to be an issue. If I label you intellectually disabled, that really tells me very little about who you are in really any way. However, should I describe the supports or services you need, I have a better handle on your needs professionally, and I at least have the potential of moving away from giving you a label that causes you to be devalued by society. It is a positive move and I raised my hand and told them so!

Thirdly, attached to the definition are what they call 5 assumptions. I will list them all here at a future date, when I have my copy of the book. But assumption #5 I did copy down. Here is what it states,

With appropriate personalized supports over a sustained period, the life functioning of the person with intellectual disability generally will improve.

I love that, but recognize that much of those kinds of efforts cease after one leaves school. I have clearly seen this principle in effect in a religious setting. Spiritual understanding and its effect on behavior, language, faith development has been at times staggering to me. I am ashamed to admit that I have had expectations that have often been beautifully exceeded by friends of mine with disabilities. I will often look at Kathi at our Light and Power class, at times holding back the tears at the spiritual insights of people, who as adults, continue to grow and develop as human beings.

I also raised the issue (when I raised my hand) that I feel that we are a bit stuck with group homes being as they are, in that we seem to be at a place, similar but not the same, that we were with institutions in the 70's. People are in the community in little institutional homes rather than in large institutions of the past. They are still socially isolated, they are still controlled and lacking in freedom, but it is individually on a smaller scale (although taken together, it is a scale of great magnitude). Dr. Schalock stated that we don't need another deinstitutionaliation movement, but I am not sure I agree. I think we do need another de-little-institutionalization movement where people gain freedom while in group homes. It is the next phase, I think, and churches are an integral part of facilitating the next phase. The Christian community can be both advocating for change, and also be the provider of real lives for group home residents. Let us have access to isolated people and let us bring real life to them. I honestly think that is what we have to offer.

McNair

Autism & Alleluias

I was contacted recently about reviewing the new book, Autism & Alleluias here. The book is written by Kathleen Deyer Bolduc and as my friend Bill Gaventa describes in the Forward is like a "book of modern day psalms." I think it is the kind of book that parents or family members of an individual with autism would read and find encouraging. The reader gets a snapshot of life experience with someone with autism, and then is pointed back to scripture, faith, prayer in integrating that experience. The average reader will find this book very accessible. I think it would also give someone who isn't very experienced about life with a child with autism many insights into the challenges that parents and families face.


McNair

Growing pains

Something occurred to me the other day, actually in the midst of doing a presentation at the Joni and friends conference in Pasadena this past weekend. The changes that the church is/will be/should be going through are going to cause discomfort, perhaps emotional distress to those who want to keep things the same. I have commented elsewhere in this blog that there are those who want video screens or texting questions to the pastor, or some other change, and think they are being so innovative. It is the preoccupation with all things technology. To some this is "painful" as pastors aren't behind podiums and the music is different (I can remember when electric guitars were cutting edge, which only tells you how old I am). But though the presentation is different the message, those present, and the focus are pretty much the same.

The kind of change that I am talking about is the change that comes from including all of the people who would want to be part of a church in the church. People are much more willing to buy a video screen then they are to be inclusive. We still have heated discussions (happened this past Saturday) about whether people with disabilities should be integrated into church programs. We still desire to segregate them. I compared it to cutting off my foot or hand and placing it across the room. It should be a part of me, but it isn't because it is separated. To me that implies we are trying to be something that we might call the "church" (an idea of the church) when we should be becoming the Body of Christ. Please don't get me wrong...The Church is the answer. No doubt about it. However, I don't think it is the church the way it currently is because the church the way it currently is is exclusionary. It is a form of church.

The idea that I had while presenting this past weekend, is that the "difficulties" the church faces as it changes to include all people, are growing pains.

I think they are the growing pains that happen when the "church" becomes the Body of Christ.

I therefore embrace the challenges, the discomfort, the wondering what to do. I will even embrace the errors that come with trying to do something not quite done before. All those are the growing pains of the "church" becoming the Body of Christ.

I remember being a gangly 14 year old who was 6'5". I had to think about walking I was so uncoordinated. That is how the church would be and at times,currently is if it is embracing those with disability in its midst. It is ungainly and uncoordinated. It is experiencing a period of growth it hasn't for a long time. Embrace the pain that comes with growth. Pain usually causes you to do things differently than the way you used to do them. Bring on the pain and seek God in the midst of growth.
McNair