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


Friday, March 28, 2008

Stigma

When a person with a disability enters a room, people will tend to notice the differences about that person. Perhaps it is his facial characteristics as with people with down's sydrome. Perhaps it is the fact that she uses a wheelchair for mobility. Perhaps it is some scar from an operation. Perhaps it is some other type of equipment that the individual uses to communicate or move safely, or breathe. These things stigmatize a person. That is, they cause those in the environment to think in a particular manner about the person who has the characteristic. If I show up in a wheelchair, people in the enviornment have their minds flooded with every idea, every notion they may have about who a person is who uses a wheel chair, be those notions correct or not. If a person uses a wheelchair, I cannot entirely help the fact that the enviornment will stigmatize them in particular ways. But I can do things that will help to remove the stigma or I can do things that will perhaps exacerbate the stigma. Let me give you some examples.

People with intellectual disabilities enjoy life as it is presented to them. Now I can present things to them via my disability ministry at church which gives the impression that disabled adults are really children. I can have them coloring pictures even though they are 50 years old. I can have them singing "Jesus loves the little children" even though they are in their 20's and 30's. I can communicate to those around the person with the disability that I believe that that person is not really an adult, she is really a child and because I am the expert in my church as the disability ministry guy, people will believe me and treat adults as children. Will the persons with disabilities enjoy coloring pictures and singing children's songs? Many will. However, I do not have them coloring pictures at church or singing children's songs because I know how this will stigmatize them towards others in the environment resulting in them being treated as children when they are not children. Instead, we will sit around tables like any other adult class at the church, sing choruses although they may be simple, which are typically sung in the church. If you walk into our class you feel like you are in a class for adults, not in a children's Sunday school class.

I think too many ministries for adults with cognitive disabilities convey the message through the activities that they do with those they are attempting to serve that these adults are children which is a great disservice to those to whom we claim to be ministering. Part of this problem is our knowledge focus in the Christian church. Sunday school is too often all about imparting knowledge, so if a person is cognitively disabled, then (it is thought) they need children's knowledge, delivered in a manner children would accept or be comfortable with. I would argue that knowledge should not be the primary focus of the Sunday school (even though it is called school) but it should rather be faith development. Faith development and knowledge development are two very different things. Is there knowledge associated with faith development? Of course there is. But I can become confused and end up just providing knowledge without worrying about faith development. Programs stigmatize adults with cognitive disabilities when they are exclusively knowledge based, partly because the accumulation or understanding of knowledge may be the weakest point for the person with intellectual disabilities.

However, faith development implies some knowledge, but also a lot of behavior. I can teach behaviors to persons with intellectual disabilities and it will likely result in faith development. For example, I can teach these people how to pray and then encourage them to pray daily, pray without ceasing, pray in faith. Will conversation with God via prayer increase their faith. I believe it will. I can teach them to fill their lives with uplifting media like Christian music or Christian video. Will that help them to grow in faith? I believe it will. I can also teach service and caring as a way of being like Jesus. In using these approaches, I am using the same approaches that those without disabilities should arguably use to grow their faith as well: doing something rather than just passively listening to something. As a result I am growing their faith in a manner that is not stigmatizing them by treating them as if they were children. I am also recognizing the fallacy of a overly intellectualized presentation of the faith that is too knowledge based for everyone in church, not just those with intellectual disabilities.

McNair
(fcbu)

Wednesday, March 19, 2008

A lesson from Pagan Christianity

I've just finished reading a book that was recommended to me by a friend called Pagan Christianity by Viola and Barna.  I have no doubt that it is considered a very controversial book, in fact it begins with the publishing company's statement that it doesn't necessarily represent their position on the issues it discusses.  But in a nutshell, it takes many of the most foundational practices of the Christian church and traces their roots.  Where did the practices come from and are they based on the Bible or were those practices adopted from the world.
I was intrigued by the book because I have long felt that there are many church practices, church structures which are an impediment to the full participation of persons with various disabilities.  I personally cannot believe that a church based exclusively on Christian principles would be an exclusionary church, so I have wondered where many of our exclusionary practices have come from.

But after reading Pagan Christianity, it struck me that in disability ministry, we may be beginning to do or are actually doing exactly what Viola and Barna claim the church has done in the past.  That is, build church structures (meaning church practices) that are based upon or mimic secular practices.  For example, Sunday school looks surprisingly like regular school with just a different topic of study.  The focus is just as knowledge based as the public schools are.  You could further look at supposedly, "Christian schools" where people with disabilities are excluded and recognize that they may be Christian in some ways, but are also very far from Christian in other ways.  In each of these examples, the Christian church has copied the way the world does things in both cases to our detriment.

But back to disability ministry.  One of the first steps, it seems in disability ministry, is to do inclusion programs.  Well, where did the idea of inclusive programs in schools come from?  Clearly not from the Christian church.  It was a development of the secular world as a way to integrate children with disabilities into the regular classroom.  The secular world has found this has not entirely worked as a strategy because public school curriculum is so knowledge based.  However, we in the Christian world, copy the knowledge focus of schools, then try to integrate children with disabilities into our knowledge based Sunday schools, and find we have difficulty in the process.  The end result is that the children with disabilities are excluded, or at best just tolerated and treated as if we are doing them a favor by allowing them to participate.

But I would argue that the focus of Sunday school borrowed from the public schools is probably pretty much wrong, so the starting point takes us in the wrong direction.  I have visited many classrooms where adults with severe intellectual disabilities sit while they are read a lesson from a teacher.  Why do we do that?  What do we think we are doing when we do that?  If we want to engage people with intellectual disabilities, then lets think about how people with intellectual disabilities are engaged.  They have intellectual disabilities.  They are not going to be engaged by sitting in a classroom and having dry knowledge dropped on them.  They have intellectual disabilities.  They are not going to make applications to their lives from content about Noah's ark or the 6 day creation of the Earth.  They have intellectual disabilities.   If we were to copy the practices of the world, do you know what the most important skills are to be taught to adults with intellectual disabilities?  They are social skills. NCLB has gotten us back into teaching content in the public schools to persons with intellectual disabilities, but by and large even the public schools have moved away from a knowledge based, content oriented approach to education for persons with intellectual disabilities.  But we in the Christian church continue to copy programs that are basically irrelevant in their knowledge focus.  Must I repeat again that the folks have intellectual disabilities.  They are not going to get it.  Then we borrow the inclusion practices of the public schools which again are probably not the best way to integrate someone (take for example people with intellectual disabilities...sure, lets integrate them at their point of greatest weakness) and we wonder at the problems we face.

As the Christian church, we can pretty much do anything in terms of faith development for our children.  We can also pretty much also do anything in terms of working to include persons with disabilities in the structures of the church.  So what do we do?  We mimic the public schools.  And as I have argued elsewhere in this blog, if our practices are exclusionary of persons with disabilities, then most likely our practices are wrong, perhaps not even Biblical in their roots.

So as we look to do faith development in children and in adults, we might consider developing models that go beyond the lazy copying of secular practices.  Is the only difference between Sunday school and public school that I can pray in Sunday school?  Are the goals just the same with only the content being different?  Or could there be alternative methods leading to a qualitatively different outcome called faith development in our students, because we are working to develop something far different than just knowledge.

Is our goal for ministry to persons with disabilities no different than the goals of the public schools?  Much of the data on the outcomes of inclusion in the public schools are not that great.  People know each other's names and not too much past that.  Is the goal for our teachers to be like the teachers in the public schools? Or would we prefer to see involvement in the lives of persons with disabilities as not just a job, but more of a lifestyle?  Do not blindly look at the secular world, Christian, and just do what they are doing.  Think Biblically.  The secular world is doing some good things.  But we have the potential to do greater, powerful, world changing, Spirit inspired things if we will seek God's guidance to do them.

McNair

Monday, March 17, 2008

Alarmed by numbers

I have been preparing a portion of a class for a certificate program that is being offered by the Joni and Friends organization. Should be good. I am talking about "intro to disability" Steve Bundy (their Christian Institute on Disability director) is talking about "the church and disability" and Kathy McReynolds (the CID policy person) is teaching about "bioethics and disability". Taken together is should be interesting. If you are interested in the certificate program, you should go to the Joni and Friends website to find out more.

Anyway, in the process of preparing, I have been looking through some historical issues related to disability in general, in the US. It is interesting that around the turn of the century, the early 1900's, that people became alarmed at what appeared to be a sudden rise in the numbers of people with disabilities. This apparent sudden rise was at least in part due to the fact that IQ tests had just been developed and used on large groups of people, institutions had been started promising rehabilitation and even cures for persons with severe disabilities so that people were coming forward in large numbers to receive services, as well as the urbanization of American society, such that people who had been doing fine in a rural setting, were not faring as well in an urban setting. Anyway, those and other factors, led to an apparent sudden rise in the number of people with disabilities who were coming to the attention of the general public. It was not a real rise in the actual numbers of people with disabilities, it was just that those who had been hidden in the past were coming out of the shadows and being seen for the first time.

As I think through this historical reaction to people with disabilities, I wonder whether there might be a similar reaction within the church. That is, people with various disabilities have largely been excluded from the church, or the church has not made the effort to reach out to them. Imagine if the numbers of people with disabilities in the community suddenly came forward to take their place in the average local church. If a church of 1,000 suddenly had 90 people with severe disabilities, and 200 people with disabilities overall, would they react thinking that either they were singled out as the place where people with disabilities choose to go, or would they think there was a sudden epidemic in their area in disability as indicated by the numbers who were coming to their church. I doubt they would recognize the fact that 9% of our population has severe disabilities, and the fact that 20% overall of our population have a disability is just a reflection of US census figures for our country.

I cannot tell you how many times I have heard from people, "I just didn't know" when told about people with disabilities in the community. "I didn't know they were there." "I never thought about it."

So imagine if those who have never thought or didn't know were suddenly faced with a church of which 20% of the congregation was diabled in some way. How might they react? I suspect they would in fact react, and probably in a negative way.

One of the things we who are in the know a bit about disability can start to do, is to share with congregational leaders, to share with people we know, to share with anyone who will listen at church that 20% of our population is disabled, and 9% are severely disabled in order to prepare them for the coming of people with disabilities to church. In this way when they do, LORD WILLING, arrive, we will not be alarmed, but will rather be thinking, we knew they would be here eventually. We had heard that they were out there, but just hadn't come to church yet.

McNair
(fcbu)

Monday, March 10, 2008

Missing love

I just completed Resurrecting the person by John Swinton which I would highly recommend, particularly if you are interested in ministry to persons with mental illness. Many of the issues apply to ministry to anyone, whether or not they experience disability.

In the final chapter of the book, Swinton says, "Perhaps the strangest thing about this process of liberation is its ordinariness" (p. 207). The process of liberation is the change that needs to come over the church such that it will embrace persons with mental illness (in this case) but also persons with various differences in general. The ordinariness is in no way ordinary largely because it is not typically present. However, when you come to understand what the basic changes need to be, you find that they are quite ordinary.

When distilled down, the change that needs to occur is that we need to love our neighbor. It occurred to me that when we have "difficult" people in our midst, like those with severe mental illness, our lack of love is highlighted, it is felt like putting your finger in a wound. However, I wonder if the fact that we are missing love for the difficult group is evidence only that we lack love for those people, or is it an indication of a greater lack of love for all people, unless they are easy. Easy to love people are those who cross my path, tell me everything is fine, make no demands on me, ask me how I am doing, shake my hand or pat me on the back and then leave me alone. Those are the kinds of people I like to populate my world with. They are the easy to love. The other end of the spectrum are those who have poor social skills, or want my money, or want my time, or cause me to have to do things like help them in the bathroom, or wipe their snotty nose, or call me all the time, or disrupt my meetings and so on and so on. They are hard to love. I don't like to populate my life with those kinds of people because they don't leave me alone. Too often, I think, the church is populated with the former and not the latter.

But it is pretty obvious who of the two above will grow me as a person, will grow me as a Christian. I am not called as a Christian to social niceties, independence and being left alone. I am called to messy relationships with difficult people who are unsatisfied with my helping, no matter what I do. I do not learn love through unfettered independence. I learn love through messy relationships, and difficult people, and those who do not praise me for my minimalist love efforts.

However, as I look at the church, it appears to be designed around and largely populated by people who want to be independent, and grow in their independence. I don't want to be a part of the vine, in a relying on others sense, I want to be a branch alone. I don't want to be a part of the body, in a dependency sense, I want to be a foot alone. As I am successful in my independence, I will move further and further away from love. The ideal of love is replaced by the ideal of independence. Those who are dependent are also disdained because of the the demands they make.

However, what might 1 Corinthians 12:9 mean? Paul asks God to remove his thorn, his disability.

And He has said to me, "My grace is sufficient for you, for power is
perfected in weakness." Most gladly, therefore, I will rather boast about my
weaknesses, so that the power of Christ may dwell in me.

How is this premise acted out in churches? The power of Christ dwells in Paul through his weakness. This is something to try flesh out in another blog entry, however, could the reverse be true? If I boast about my strength, could it be that the power of Christ does not dwell in me? If I am independent, if I am unconnected with others through my own and their need, does the power of Christ not dwell in me? Our independence, our disconnectedness from those who would potentially sap our strength for love and service is a symptom of a disease that has permeated the church. "But now faith, hope, love, abide these three; but the greatest of these is love" (1 Corinthians 13:13). Are we missing the greatest thing? Are we missing love?

McNair

Friday, March 07, 2008

Evaluation of "Local church support to individuals with developmental disabilities"

The following is an essay that my daughter developed for work in one of her pre-law classes at Seattle Pacific University. She does a great job identifying some of the most relevant issues from an article I wrote several years back. She also chides me for not going far enough with the article and its recommendations. I provide it here as a good synopsis, and a logical presentation of the issues.

Essay evaluating “Local Church Support to Individuals with Developmental Disabilities”
By: Jeff McNair, Ph. D (Published in: Education and Training in Mental Retardation and Developmental Disabilities, 32(4), 304-312)

By Amy McNair

In his article, Dr. McNair argues that the church is an untapped resource as a network for services and support to people living with disabilities. He describes what qualifies someone as an adult (employment, independent living, etc) and how individuals receive dignity through that position, then goes on to explain the difference between state and natural support for people. After describing the role the local church can potentially play in peoples lives, he argues that church support is the only logical choice that is able to provide all the services people with disabilities need; and it is currently not living up to its potential. The church has a responsibility to people in the community, and through fostering this kind of relationship; the church itself will change for the better. Instead of using state-funded programs that foster dependence, the church can empower people with disabilities to live more independent lives.

The most logical and sound argument Dr. McNair uses in his article follows the modus tollens format as follows:
1. If the church wants to obey its’ calling and offer services to everyone in the community, then it can include people with disabilities.
2. The church does not include people with disabilities.
3. Therefore, the church is not obeying its calling to include and offer services to everyone in the community.

This is a strong argument, particularly since the words church and not obeying should probably not be in the same sentence; except not all churches want to offer services to everyone. They often pick and choose the groups they would like to serve. Dr. McNair’s point is that there is a learned helplessness that develops when it is the State that a person must rely upon. He uses the example of Scrooge and how he just gave his money away to the State, or just assumed the services they offered were working, without actually having to do anything and without really helping anyone. The people receiving services depend upon them too much, and others able to help sit back scratching their heads, unable to figure out how they can help and if it would even make a difference. So the argument made in this article is that people, specifically within a church setting and faith community, can do something to help simply by offering services that are already offered to other members of the community through the church.

A frequent argument against this idea of inclusion of people with disabilities is the cost of such inclusion in a church. The answer Dr. McNair gives is that a church is free to spend its resources however it pleases and on whomever it wants. The only requirement would be meeting the standards the local church would impose. Other people groups (high schoolers, elderly people, singles) can pick from varying ministries at different churches within a single community, so why is it that in most places there is not that same variety of choice for people with disabilities?

The article logically continues into what areas that the Church could provide assistance. Things like helping to find employment, offering medical services, transportation, financial support, social support, and education all are potential ways the Church could express their faith and support to people with disabilities through service. By using the gifts church members already have, there is untapped potential for hair stylists, physicians, mechanics, cooks and all other sorts of people to help contribute in place of a state program in the lives of adults with disabilities. As Dr. McNair argues, “when an individual becomes a member of a church, they immediately inherit an extensive network.” Only the local church has the ability to combine all the networks and help people. He continues on and explains that “via church membership, people truly become potentially connected with extensive networks which once again are trying to serve God, an integral part of which is serving their fellow man.”

This article has sound arguments and reaches logical conclusions. The main alternate view is exclusion of people with disabilities because it is too difficult or just not something churches want to do at this time. People also argue that it is too expensive for the church to become a network for certain groups and that it will be more of a trial then it is worth. The question is: when will it be the right time? When can the church understand that there is an entire group of people (20% of the population has some sort of disability with 9% having severe disabilities) of whom 90% is unchurched? If this was a minority group, there would be an international uproar within many faith communities, but on the issues surrounding disability, the church as a whole is largely silent.

The main argument then becomes whether or not this article goes far enough. It seems it could be argued that the churches entire perspective on ministry up to this point has been wrong if it has not included people with disabilities to this level. There should never be a question of whether a child with severe disabilities is welcome in a Sunday School class, whether a woman in a wheelchair will have an accessible way to enter a church, or whether a man with severe mental retardation will be welcomed as a valued member of a congregation on any given Sunday. The church of any faith is being disobedient, deliberate or not, by both not reaching out to these community members and inviting them to services in the first place, and not including them when they arrive on their doorsteps. There will eventually be consequences. It has been said that the opposite of love is not hate, but apathy. The church has been apathetic towards people with disabilities, and that needs to change. This is what needs to be argued. We cannot expect the church to be an agent facilitating a support network if they do not support people with disabilities to begin with.

Sunday, March 02, 2008

Sally's memorial service

To follow up on my last entry, we held a memorial service for Sally at our Light and Power class. Circumstances prohibited us from doing this on the two occasions over the past 15 years when two other members of our class died. The first had left the class, had been very ill, and lived at home. We literally didn't know until several months after her death that she had died as for some reason her family cut off contact with us. Then the second person was a man and his family requested that we not tell the group that he had died, but that he had moved. So we honored their requests for a while, but then the other men that he had lived with started reporting that he had died, but once again that was about 6 months later. So Sally was the first person in our group for whom we had the privilege of having a memorial service.

The memorial service went very well, I thought. There was singing and tears, as there should be when a life is remembered. There was discussion of the hope of our salvation, and that Sally was now in heaven with the Lord. But the most poignant moment, to me, was when her room mate read the 23rd Psalm to the class. I was blessed to be able to stand with her as she read, and help her with unfamiliar words. She had the Psalm largely memorized which can become confusing when you are are trying to read something. Anyway, she did beautifully. She also closed the meeting with a prayer.

One of the most interesting things, however, was that the group home owners were there. They are a wonderful Christian couple, who are very loving towards the residents. The gal owner, related a story of how there had been many licensing people around, obviously checking to make sure there was nothing wrong about the death. They noticed that there were flowers and a nice sympathy card that had been sent to the home. In fact there was a bouquet for the home, and a bouquet for Sally's room mate. The licensing people were surprised and shocked that someone from the community had not only noticed Sally's death, but that they had responded so kindly by sending flowers. I must tell you that I had nothing to do with the sending of the flowers, but was very proud of my church for sending them. What a great example, a great witness to those licensing people. But it also made me sad to think of how many people like Sally live in group homes where they have no community interaction with others. The group home owner made the comment about how important our group was to Sally because we were here friends, and everyone should have friends in their lives. Such a small thing, but such a huge thing in terms of the quality of a person's life. People in group homes are so isolated. But they are people who would love to have friends as much as anyone loves to have friends. Too often, however, the church has ignored those people.

You know the average person in a group home is someone who would come to church if invited. They would be responsive to the Gospel message. With simple acts of kindness, we could literally change their lives. But we don't do it. We don't try to reach out to people in group homes as the Christian church. As a result they live segregated lives with few friends and limited opportunities for social integration. In the end they die and no one other than licensing even notices. It was such a blessing today to know that the passing of a woman with severe cognitive disabilities was noted by a room full of perhaps 80 people who largely gathered to remember a life. They were also genuinely sad to see her go. It is a small thing, but once again it is an important thing.

McNair