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

Monday, July 24, 2006

Its about relationships

Kathi and I had a great time yesterday. We had lunch with one of the pastors and his wife from our church, and our PAID ministry support person and her husband. It was great time. The pastor, Kurt, asked me where I would like to see our church in 15 years. As I thought through that question, and listened to the discussion that ensued, I was once again impressed with the fact that what are needed are not programs but relationships. It is not about building programs that include people, it is breaking down the barriers that exclude people from existing programs. Ben (the husband of our ministry support person, Rachel) talked about how he wished that people with disabilities were just known by others in the church, to the point that needs would be met on a simple intepersonal level.

We all talked about the distancing that can come from programatic approaches to helping persons with disabilities. That whole question is something that I have thought about a great deal and I have come to the conclusion that we need both. We need to be people who introduce those with disabilities to those who haven't experienced them yet in order to break down the "otherness" feeling that many nondisabled persons have about those who are experiencing disability. That is all about relationships and experience and personal interactions. Those types of engagement will lead to experiential knowledge which will break down many of the barriers which have been constructed. Why do I not feel uncomfortable with people who act atypically? Probably more than any other reason is because I have been around many people over my lifetime who have been atypical actors. I have know people whose behaviors range from those with very minor social skill deficits where you just notice a very subtle difference, to those who smear feces or publicly masterbate, or violently punch themselves in the face. Through experience, I have learned to redirect them, or try to give them alternatives to their current behavior when asked to do so. But largely, I have learned to accept them. Sure, I get mad at people and enjoy the company of some over others. But the opportunities I have been provided through my experience have allowed me to see the person behind the atypical behaviors. By seeing the person, the otherness starts to fade. But these changes that have been wrought in my perspective came over time through personal interactions.

There is still a place for programs that focus on inclusiveness of persons with say, cognitive disabilities. Places where they can have the scriptures explained to them in a clear but not demeaning manner. Where they are treated as adults, but given information at a slower pace. But I think I would even sacrafice those types of settings (as useful as they are in building spiritual knowledge and understanding in persons with cognitive challenges) for simple ongoing interactions with other people. Many of the lessons we teach in our Light and Power class, for example, could be facilitated by friends explaining the sermon to friends. Additionally, as people experience more severe forms of mental retardation, their church involvement does not revolve around some sort of spiritual formation. It relates to them coming to a place where they are loved and accepted. Where they feel a part of something while they have a donut and coffee (see Fowler's "Stages of Faith").

So I think where I would like to see my church in say 15 years, is a place where there are many relationships between people independent of their differences. Where differences perhaps cause you to do a little planning (assisting a person who uses a wheelchair, for example) but doesn't in any way stifle relationships. Yes, there are structural changes which need to occur in the church, but rather than just prescribe structural changes from the outside, people will desire to see changes when they see their friend Sally excluded from opportunities for service or whatever within the church. Their righteous indignation would fuel the desire open things up. But as Kurt (the pastor at our lunch) said, it has to get into the DNA of the church. DNA is very difficult to change.


Wednesday, July 19, 2006

Religious liberty in group homes

I am in the process of researching issues related to the religious liberty of persons with cognitive disabilities who are living in group homes in the community. I would appreciate any input that those of you who visit this blog might be able to provide. Specifically, I am looking for
-other resources
-stories of your experiences

You can provide any input via this weblog, or you can email me at mail@jeffmcnair.com

Thank you for your assistance.

Thursday, July 13, 2006

Choosing disability

I met a woman yesterday for whom I have a lot of respect. She is a friend of my Mother-in-law whom I met at a party. She related the following story.

She and her husband had two young boys, once 10 and one 12. She had had some experience volunteering to work with at risk children, but thought that she would like to do more. She decided to be a foster parent for a couple of the children. However, there wasn't a need at the particular time that she was interested for the type of children she had been working with. Undeterred, she decided to adopt two children with developmental disabilities. One had down syndrome, and the other some very rare syndrome that she related had hardly been described at the time. It ispowerful to note that she had never known a person with down syndrome before. The two girls lived with her family for about 11 years. Ultimately, one of the girl's father moved out of state, and the regulations stated that a family member needed to live in state for a child to remain in the foster care situation. The other girl moved out of the home to a group home. Apparently and sadly, one of the conditions of her foster care arrangement was that she could not contact them once they left her. It has been nearly 20 years now and she hasn't heard from either of them. She suspects one of the girls probably has died because she had severe medical problems at the time she was their parent.

Upon hearing her story, my only response was, "God bless you for taking those girls into your home!" She related that she had received tremendous benefits to her family as a result of having the girls. Effects, positive effects, on her and her husband as well as on her two boys were lifelong.


Wednesday, July 12, 2006

Bruce and Cam (aka Martha and Mary)

I had the privilege of presenting to a group of Christian medical students at a meeting on the University of Redlands (Ca) campus last night. What a great group of future doctors they were. Our program was comprised of myself talking about impairment vs. disability, Kathi (my wife) intereviewing 3 adult friends with cognitive disabilities, Alice a friend and medical student and her son Josh sharing about their experiences with the medical world and another friend and university colleague, Bruce sharing about his experience as a parent of a child with a disability.

I got a bit choked up at one point, when Joyce, one of my friends experiencing disability shouted to me, "Spit it out" which shook me right out of it! Kathi asked great questions and Alice provided wonderful pointers, mostly about treating people with even the most severe disabilities as people, with respect. This seems so obvious, however, if you have any experience with persons with severe cognitive disabilities, you know that it is not at all obvious.

In the midst of the evening, Bruce shared the story of how he was keeping an eye on his son, Cam a preteen with autism while he was doing yard work. As he was working, trying not to be distracted by his son, an older gentleman walked on the sidewalk past them. His son ran up and positioned himself in front of the older man and began a conversation. "What do you have in the McDonalds bag you are carrying" it started after name introductions. The man stood there and kindly interacted with the boy for several minutes. Finally the man said it was time for him to leave. As Bruce stood there, he kind of shook his head to himself, wishing that his son would leave the man alone as he got back to his pruning. The man began to walk away when his son called out to him again. "George!" he said. "Do you know Jesus as your savior?" the autistic boy called out. Bruce said he was moved and really convicted. He was the Martha to his son's Mary (to use the Biblical story). At that moment Bruce said that he learned a great deal about himself in relation to his son, and also about his son.

It was a wonderful evening. I was very impressed by the students and the program (put on by Campus Crusade).


Thursday, July 06, 2006

Biblical language

Dr. Stanley Hauerwas writes of how groups define themselves by their narrative. The Bible is obviously the narrative for Christians and in the Bible, one can hardly read the Gospels in particular without bumping into people with disabilities. In many occasions, Jesus heals them. Dr. Bob Pietsch has written how the Jewish leaders needed only have a man with a “withered hand” in a room of people to “trip up” Jesus. That is, they knew He would see the man and then that He would heal him. Jesus on another occasion sends out his disciples, and later the 70, with the power to heal people with all types of infirmities (Luke 9). When in prison, John is told that the proof that Jesus is the Messiah is that the sick and disabled are healed (Luke 7:23).

Jesus and other biblical writers change how we think about things. They redefine words as illustrated by the following.
Foolish – one who hears words but doesn’t put them into practice (Matthew 7:26)
Good – one who bears fruit (Matthew 7:17)
Servant – we are all to be servants of all (Mark 9:35)
Wisdom – the fear of the Lord (Psalm 111:10)
Strength – is Christ (1 Corinthians 1:30)
Poor – poor in the eyes of the world but rich in faith (James 5)
Humble – those who are lifted up (Luke 1:52)
We are also instructed to, give to the needy (Matthew 6:1-4), now worry about our lives (Matthew 6:25), and seek first the kingdom and righteousness (Matthew 6:33).

Each of the above establish criteria for followers that nearly all may participate in. These radical definitions provide access for the inclusion of nearly all people. In an effort to include all, Paul goes through a list of persons who would typically be excluded, ultimately going so far as to state that God chooses, “the things that are not” (1 Corinthians 1:26-31). Interestingly, this perspective and the above definitions benefit persons with disabilities.

In spite of this language, this narrative, such perspective changes are not reflected in many churches. These environments can have an effect positively or negatively on God’s ability to minister within their midst. For example, in Matthew 13:58, it states that Jesus was unable to do miracles among them due to their lack of faith. While on the contrary, when the paralytic is lowered through the roof for Jesus to heal in Luke 5:17, the Bible says that when Jesus saw “their” faith, including the faith of those who lowered the man, he replied “Friend, your sins are forgiven.”


Tuesday, July 04, 2006

Religious liberty

On the Fourth of July, it makes sense to talk about liberty. In this case religious liberty. Let me share a brief experience and then tell you what I have been doing to better understand the situation and its potential ramifications.

There were about 8 residents of two group homes for adults with cognitive disabities who were attending my church. Specifically there were 3 women and 5 men along with a group home worker who were attending. We were enjoying getting to know each other through the activities of the church on Sunday mornings. Somewhat suddenly, they stopped attending the church. After making several attempts to contact the group home which received no response, we finally got into contact with the woman who had been bringing the adults to church. She related that she had been fired for very non serious infractions (according to her telling) and that the folks were no longer permitted to go to church. We got the impression that they were no longer permitted to attend because of the nonreligious proclivities of the group home owner.

Since then, I have been in contact with a variety of people/agencies to get an understanding of the religious rights of persons with cognitive disabilities living in group homes. Several experts in religious/disability although helpful, didn't have a lot to offer in terms of resources. The Dept. of Justice wrote me a letter which implied that rights might be curtailed depending upon who funds the group home. A legal aid group indicated that parents or conservators might restrict the religious liberty of these adults. In California, religious liberty is guaranteed under Title 17 of the California code of regulations which states, (4) A right to religious freedom and practice, including the right to attend services or to refuse attendance, to participate in worship or not to participate in worship.
In speaking with a client advocacy group, I was informed that no one can refuse religious liberty whether conservator, parent, etc.

The critical factor then becomes access. How does one determine the choice of a cognitively disabled adult living in a group home? Group home providers may restrict access on the basis of their own attitudes toward religious activity. The rights of others living in the home might also come into play. I am confident that those who are funded by the state are very gun shy when it comes to anything related to church and state, and have perhaps overly restricted access in some cases. I continue to try to do research in this area.

There is case law related to group home owners attempting to proselytize those living in the homes which says that such pressure is inappropriate. I would suspect it is illegal to proselytize for or against religious faith. One must wonder, however, about the procedures necessary to provide choice to someone in this area.

As discussed elsewhere in this blog and on my website (see, A Discussion of Networks Supporting Adults with Disabilities in the Community on my website) I am confident that the local church is the answer to community integration of persons with cognitive disabilities and will one day prove to be so. However, an important step in the mean time is access to persons living in group homes, and assisting adults with cognitive disabilities to express choice in this area.

I would appreciate any insight, ideas, resouces readers of this blog may have come across relative to this issue. Please send them along to me at mail@jeffmcnair.com