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

Wednesday, April 29, 2009

A few comments on leadership

Throughout the years of writing this blog, I have at times complained about leadership within the church. In my Feb 4, 2006 entry, I spoke about the late Rev. Dennis Kingsland who told me that pastors were a bottleneck in the attempt to open churches to people with disabilities. Since that time I have often reflected on his statement. But there is more to the impediment issue than just standing in the way of ministry to all of God's people.

Leaders also need to set the example, from the pulpit. Perhaps pastors have not been congregational members for a long time, but a whole lot of congregational members listen to what the pastor says. They listen to what he says and what he doesn't say. That is why a periodic mention of individuals with disabilities is an important thing for pastors to do to recall these individuals to the congregation's mind, and to reinforce that they are valued members. In addition, brief comments can guide the congregation in their interactions, tell them how to interact.

In our group, the Light and Power Company, we have very loving dedicated people with and without disabilities who are involved in ministry to each other and as participants. Periodically, I remind all of us of what our standard is for the group. So I say to those who can be counted on to be involved in the ministry things like,
"Remember, we are always about acceptance."
"It is more important that people have access to me as the leader than it is that they sit quietly"
"We need to recognize that people are here for different reasons, and at times our focus will be the reason why others are here, and perhaps not the reason why you are here"
"We want to avoid shushing people and telling them to sit down or we will be spending all of our time doing that. Let's grow in our acceptance of people with social skill differences."
We also recognize that the class will not always be quiet, that conversations may be going on during a lesson, or during prayer which we learn to tolerate. We state that there is pretty much nothing that anyone could do in our group that would cause them to not be welcome.

I make these statements to the group to remind us why we are here, what our standards are, what we expect from each other in terms of forgiveness and tolerance and acceptance. If those who have to a greater degree committed themselves to such ministry need this type of reminder periodically, what about the regular congregational member?

One of my students shared in class the other night that she is the parent of a child with a disability and her famiily attends church. She related sadly, however, that every time she arrives with her family, it is almost as if everything stops while the people all look at her and think, "Here comes the Jones family." She wishes that just once her family would be welcomed like any other. To me that is a leadership thing. I think the pastor who must be aware of the feelings of this family and the larger congregation regarding this family should just say out loud, "I recognize that little Sally Jones can be noisy and disruptive. Rather than staring at her, how might we make the Jones family feel loved and accepted the next time they arrive at any meeting?" By addressing such issues head on, we not only communicate to the congregation that the pastor, the leadership wants those people accepted, but also to the Jones family that their acceptance is a priority for the leadership.

Imagine your pastor starting off a Sunday service someday saying something like, "We believe that this church should include all people with disabilities. That is one of our core values. Thus the rest is just logistics. We may not be able to do things the same way we always have, but we think that having people with disabilities among us is more important than maintaining our traditions." You know what? I would almost guarantee to you that the congregation would rise to its feet and give the pastor a standing ovation. You see, I as a congregational member am waiting for that sermon. I have probably been waiting for that sermon for the better part of 40 years. I pray someday I will hear it.


Friday, April 24, 2009

The social integration mystery

Yesterday I went to the retirement party of a long time friend. He has worked in the field of rehabilitation for nearly 40 years. The party was crazy and fun. But as I looked around the room of about 200 people, there was no one there who had a disability. In particular, I saw no one there with an intellectual disability, the folks who were the focus of my friend's professional career. I felt a disconnect.

Over lunch, I chatted with several women who worked for an employment vendor in Riverside, CA near where I work. Because the were involved in vocational services, I spoke to them about how I feel we have missed the major point of transition for persons with disabilities. "If I asked you what was the most important thing in your life and you said your job, I would feel sorry for you" I said. "If you said your house, I would also feel sorry for you. No, the most important thing should be your family and friends, being socially integrated with other people. But work and home (although they are very important) are the major focus of efforts on behalf of persons with disabilities in the development of transition services." They nodded in agreement. One responded that there are recreation programs that the people participate in, but I countered that they are socially integrated with people who are paid to be with them. Imagine if you were socially integrated in your life only with people who are paid to be with you. They all agreed that wouldn't be desirable.

"It is our responsibility as the experts in the field to have personal relationships with people with disabilities, like the folks we work with every day. Disability needs to enter our personal lives. We talk a good game about integration, but we as the experts must model social integration for those around us, for the community. Why would others want to be socially integrated in their personal lives if we, the professionals, are unwilling to be integrated in our own lives?"

"But we can't work with our clients outside of work. We aren't permitted." That is a very typical response when you offer the idea of interactions in your private life. I always respond in a friendly but direct manner, "But you don't serve all the people with disabilities in your community at your job do you? You could clearly find other people you might interact with."

They agreed. But the next question was a shocker for me, but I also understand where it came from. One of the women said,
"Where do we find people with disabilities in the community?"
I honestly don't think she was trying to make excuses. "Maybe if we see someone in the grocery store, we can introduce ourselves" she added. A great idea, but she had earlier indicated to me that she had been in the disability world as a vocational provider for 20 years! Yet she didn't know how or where to find people with disabilities. This indicated several things to me. First, professionals like this woman, good people with a heart for their clients, had no idea about the day to day lives of these people outside of their experience at the vocational center where she worked. The people with disabilities just showed up like magic or something, and it never occurred to her, a professional to wonder about where they lived, or what their lives were like outside of the vocational setting, or whether they were happy at home, or just about anything about their lives other than their performance, their behavior at the vocational setting. I suppose she would wonder should a person show up with a bruise or a wound of some kind. Then she would wonder about the home, but otherwise, she was oblivious. Second, is the fact that a person could be a professional, could receive training and serve as a paid helper for nearly 20 years, and neither her training or her experience would indicated to her that she might have interactions with people like her clients outside of the professional setting in which she served them. No wondering about whether clients were lonely, no interaction with their personal lives whatsoever. To my mind, this is a huge hole in the training of professionals.

You see, you have many people who are literally rabid about things like full inclusion in public schools, however, they have no desire to be socially integrated with people with disabilities themselves. Parents at the birth of a child with disabilities will suddenly become full inclusion zealots, when it now affects them, however, they were clueless when the child was someone else's. Special educators lament the inflexibility of general education teachers at their efforts at inclusion. How included are the same types of people, age peers of the special ed teachers in their own lives? No we are too often hypocrites, literally saying do what I say, not what I do.

"Don't you have that church program somewhere?" one of the women asked. There had just been an article in the newspaper about the efforts my church has made to integrate people with disabilities. "Yes, I said, which is another way that you can facilitate the integration of people with disabilities." But I want to be sure to say that this is NOT a religious issue. Of course for me it is an issue of obedience for the church, however, I have spoken to many secular groups about the responsibility of professionals in the lives of people with disabilities and it has been very well received. I can speak easily to anyone independent of what they think about things religious and give the same argument, and they will respond to it, will interact with it. So I am bold about their responsibility as professionals toward people with disabilities in their communities. How through small efforts on their part, they can impact the lives of people in the community.

I have mentioned this before, but I visit a group home in my community about once a week. Sometimes I stay for a couple of hours, but like last night I was only able to stay for about a half hour. I bring ice cream bars and a bottle of coke. They tell me about their lives and I tell them about mine. Sometimes we have a catch with a baseball, or play a board game. Sadly, that may be the highlight of the week for some of those people, particularly the men who live in the home. But, I have the opportunity to be the highlight of the week for 5 people who are socially isolated, surrounded by people who are paid to be with them, in the community. Myself and those at the church are probably the only people in their lives who spend time with them because they want to, just to develop friendships and that is sad. One man repeats over and over to me, "I am your friend, Jeff. I am nice to you Jeff." "You are my friend" I respond. It is beautiful, but also kinda breaks your heart.

The retirement party was fun and I laughed a lot. But imagine it had several dozen people who had been clients of my friends, or just people he knew from his personal life who had intellectual disabilities, particularly severe intellectual disabilities like those he served. What a powerful example that would have been. How much more fun that party would have been. Instead you had a room full of caring human service workers who have dedicated their lives to people with disabilities. But there were literally NO people in the room with they types of disabilities they are used to seeing in their "clients."

For us, the professionals, people with disabilities cannot just remain "clients" they must be people as well who find their way into our lives.


Wednesday, April 22, 2009

Final Serbia report

Well we had an amazing time our last night in Belgrade that revolved around going to this large facility for people with various disabilities. The Bible college talks often about these 3 women who are Christians there. That many people go to visit them. We went to the place and there were probably 40 adults with autism and severe ID milling around in a very large fenced area. It was very depressing. I tried to greet some of them, but it is tough when they are autistic and you don't speak the language.

Anyway, we went to the other side of the facility to go meet the three ladies. On the way we started chatting with a woman with disabilities who was sitting there. When we said we were from America, she asked, "Why did you bomb us?" referring to the NATO bombing in 1999. People there are sensitive about that issue feeling the bombing was unjust. We told her we had nothing to do with it but were sorry it was so very frightening for her. Anyway, after a while, Steve asked, "Is there anything I can pray for you about?" She replied, "Why do you want to pray for me?" Steve said, "Well we talk to God and tell him about our needs. We would like to talk to him about yours". She replied, "Well give him my regards!"

We then went in and chatted with these three ladies. They were all very physically disabled but of normal intelligence. We once again tried to be encouraging. One of them asked, "What would you tell a person with a physical disability if they asked you why God made them that way?" Steve responded, and then looked to me. I told them, that this is a mystery, but John 9 tells us something that is not intuitive. We look at people with disabilities and think that the disability is somehow bad. But when Jesus was asked why the blind man had a disability, he responded that this occurred so that the Glory of God might be seen in his life. So I told them someone might have a physical disability so that the Glory of God might be seen in her life. They were kinda stunned. One began to cry softly. After an extended period of silence, one of the others said, "I have seen the Glory of God in my life" and then shared about how she prays for her family, all of this of course through a translator.

I then told them that if I lived in Belgrade I would try to come by and visit the mostly men who were on the other side of the facility. I asked them, "Would you please remember to pray for the men that are on the other side?" You could see them milling around outside the window. One of the ladies said, "What would we pray for them about?" I said, that they would be safe, that they would feel loved, that their families would come and visit them, that they would be happy. Another of the women began to cry and said "We will do this." We chatted for a while longer and finally left. It was a very interesting time, very powerful time. I really felt like I was used in that situation and was praying as hard as I could the whole time. It was very cool.

The final days of training were great, once again because of the very talented students. We took a picture of the group and said our goodbyes. One of the students was hilarious. He told me to "Show the picture to women" because he is looking for a wife I guess.


Thursday, April 16, 2009

More from Serbia

We had another wonderful day yesterday. It is interesting that there are several students in the group who themselves have a disability. Each of them has asked to sit down with Steve and myself and have shared very deeply from their lives. One was a woman who wondered whether it was strange that she wanted to be married like anyone else. Her culture told her that it was. One was a man who was trying to find his path in doing ministry to people with or without disabilities who came from a very abusive background. Others wondered about working with people with severe mental illness, or Alzheimers disease or intellectual disabilities. This is a group that really gets it which has been so encouraging to Steve and I.

We hope to visit a facility that houses 70 people with various disabilities. Apparently only 3 of those are Christians so the churches in the area have been fighting over who would work with those people. The end result is that the 3 are very confused. I asked about the other 67? The response was basically that they weren't Christians as if that mattered. I asked, "If you had medicine, would you go to the people and only distribute it to those who are Christians?" With issues of language translation and such there is always a good chance that something was lost in translation. We hope to visit the place so I will have to report back again.

There is an emphasis in some of the students' minds on the idea of healing, that healing is what God has for disabled people. We have both indicated to that that although we absolutely believe that God can heal, most people are not healed physically. How do we interact with those people? What does God have for those people? I think we have caused them to stop and think a lot more, and recognize there is a ministry to the overwhelming numbers of those who are not healed.

I have been so encouraged by this group. I asked Steve whether this is a typical response to the material we are sharing. He indicated that many groups are positive but that yes, this group was particularly good. How exciting to be a part of this. My prayer (and please pray with me) is that God will grab a few of the folks from this group and really use them in Serbia and Macedonia to open the eyes of the church to people with disabilities.


Tuesday, April 14, 2009

A report from Serbia

As I write this, I am sitting in a room of 23 people from Serbia, Macedonia and other places, some Bible students, some church leaders in the community. Steve Bundy, director of the Christian Institute on Disability is talking about the notion of healing to the students. He is great.
I spoke a bit earlier about a Biblical perspective on suffering. These folks are like sponges just drinking in all of the information. They have some experience with disability in their personal lives, but I guarantee they have never heard the kind of information we are sharing before. I can't tell you how exciting this is. These folks could be the ones God has in mind to bring change in the church and inclusion of people with various disabilities.
Comments have been made about how the people have just been overlooked by the church and by the attendees themselves. It is almost a spirit of repentance as they attend the lectures and listen to the material.
Joni and Friends has done an amazing job assembling the materials that are totally Biblically based and explain so many answers to the questions people have about disability. Should you have the opportunity to attend such a seminar, they are increasingly available around the world, and in America as well. JAF is also trying to get the material into Christian colleges and seminaries. It is amazing to me to think that this information, so basic, so foundational is only now finding its way into the minds of Christians. So exciting.

We are here for several more days, actually till Friday, so if you think about us, would you please pray? What a privilege, what an honor, it is to be here, in this place, at this time, sharing this information, that has the potential to revolutionize the Serbian church and bring integration to persons with various disabilities through the church.

I shared with the students yesterday that this is probably the most radical meeting occurring in all of Serbia today.