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

Saturday, July 31, 2004

How would things be different? People with disability

For the next few blogs, I want to look at how things might be different if the church around the world were more responsive to persons with disability, particularly cognitive disability. Lets next look at how things might be different for persons with disability.

These differences can be considered according to several general headings.
1-how persons with disability would perceive the church
2-how persons with disability would perceive God
3-how persons with disability would perceive themselves
4-what persons with disability would do

Lets look at each of these areas briefly.

An interesting study would be to determine how persons with disability currently perceive the church. It is always tricky asking persons with mental retardation what they think about anything as they will try to tell you what they think you want to hear, not necessarily what they think. But I do wonder what they say to each other about the church. I suspect it is mostly related to the people they know at the church and less related to "the church" per se.

But wouldn't it be incredible if the community of persons with disability (persons with disabilities and their families) thought of the church as their "go to guy" in virtually any situation. That the words which would come out the mouth of any person either directly or indirectly interacting with a person with disability would be, "Where do you go to church?" Or even "You should go to a church because they will definitely take care of you there." Or "If you want to meet some really friendly, helpful people, you ought to go to the church." I can almost imagine a world where the church would be the best, first place for a family or a person with a disability to get connected. If the church was being obedient, it would quickly gain that reputation. The connection between the church and persons with disability would be as natural as bringing a new baby home to a family, or going to the hospital if you are sick. It would be the obvious thing to do because of the results others who did the same thing experienced. Word of mouth would quickly spread and even state agencies would be caught up in the natural supports being provided by churches.

Persons with disability and their families would then perceive God as someone who cares. Someone who reaches out to those in need. Someone who sees value in all people. Someone who is willing to be inconvenienced in order to include everyone. Isn't that who God is? Christians are quick to speak of how God in the form of Jesus was willing to die for them so He could have fellowship with them and they could be a part of His kingdom. Are Christians willing to take people with disabilities out to lunch, or call them on the phone so they can be a part of the church? Are they willing to be "inconvenienced" in any way so that people with disability can feel the value they have in God's eyes? Interestingly there is research which indicates that parents of children with disabilities feel supported personally by their religious faith, but do not feel supported corporately by the church. Sad.

That the church does not do what it should, impacts how persons with disability perceive themselves. We have outreach programs for a variety of groups, but not necessarily for persons with disability. One might counter, "But we don't exclude them from our outreach?" Perhaps true, however, you won't recruit poor people if you exclusively go to Starbucks. You won't recruit older people if you go exclusively to the YMCA. Unfortunately due to a variety of factors which influence the life experience of persons with cognitive disability, they are often do not have access to the same avenues for recruitment that typically might bring in other groups. They often can't read, they have limited transportation abilities because they typically can't drive, they often have financial problems. No, in order to recruit members of that group, you must specifically go after them, find and reach out to them. The fact that specific efforts are not being made to bring these individuals in says to them that they are not of particular interest to the church. The fact that there aren't more persons with mental retardation attending the church is particularly damning, because if invited, probably the majority would come. That they are not there indicates that no one is inviting them. It is not difficult to make the jump between the fact that because the church doesn't want me that probably is because God doesn't want me.

What persons with disability would do is come to church to access the friendship and supports they would receive (their motivation then, would be no different from persons without disability who attend church).


Thursday, July 29, 2004

How would things be different? The church

For the next few blogs, I want to look at how things might be different if the church around the world were more responsive to persons with disability, particularly cognitive disability. We will first look at how the church might be different.

If the church were more accepting of persons with disability, there are several ways in which things would be different. Lets consider these differences according to several general headings.
1-congregational make-up
2-congregational attitudes
3-community perceptions
4-God's blessings

If all congregations were accepting of persons with mental retardation, the make-up of the congregation would be different. Instead of the hundreds of individuals with disability remaining at home on Sunday mornings, they would be at church, in the congregation. It would not be unusual for you to come to church and sit down next to a person who had a cognitive disability. There would also be a greater liklihood that families of these persons would be in attendance which would further increase the percentage of individuals directly affected by the disability. At least initially, untill the practice became more commonplace, there would be those who would come to see whether the church was really open to these individuals. They would hear about the unpredictability of the congregation at times, and might want to come to see if something unusual would happen, and how those in the congregation would react.

By having a steady diet of persons with mental retardation in the congregation, people would either come to accept those members, or seek to find another church where they can worship undistracted (I wonder where the practice of undistracted worship first came into place in the church? We are to at times pray in a private place, however, there is no indication that I can see that worship ALWAYS needs to be so predictable and regular, to the point where a baby crying is cause for my consternation). If all churches were open to persons with cogntive disability then there would be nowhere you could go to get away from them! I like that idea. The presence of these kinds of disabled persons also broadens your definition of normal. You break out of a situation where everyone is just like you who attends your church. I come to learn that there are variations in the manner in which a person can act and still be a Christian. I come to learn that there are variations in abiltiy level in persons who are Christians. I confront my own hard, brittle attitudes towards acceptable differences in persons, and am hopefully softened with the rest of the environment. I am confronted by Christian brothers and sisters who wisely tell me that I am the one who needs to change, not necessarily the persons with disability.

Community perceptions will change as well. Christians are criticized for being intolerant. Trust me I know after 15 years at a state university campus. It is difficult to be accused of intolerance when you are leading the way in including disenfranchised persons in your fellowship, taking them into your home, meeting their needs. Not only do you serve those who come to you, you scour the community to find others whose needs you might meet. The church becomes preoccupied with meeting the needs of hurting, in this case disabled, persons in the community. Quickly the community will know, that if you have a problem, go to the church as they will do whatever they can to help you and include you. I remember hearing speeches by politicians who held diametrically opposed views on issues like abortion or programs to the poor to those of Mother Theresa. However, whenever she was with them, they could not argue with her life as she spent it with the poorest of the poor in India. I remember her even upbraiding a president about his position on abortion, and all he could do is listen. It is that kind of life the the church needs to evidence in the community. A life of caring and service which silences the voices of many deriders, and becomes a place where people are drawn to see what it is that motivates these people to do what they are doing.

Finally, there are the blessings we will receive from God for being obedient in this area. Who knows what God might do in our midst if we were obedient in this area? I personally would like to find out what He might do. I think He would expand the numbers of the church exponentially. I think he would bless us beyond belief for reaching out to the types of people that Jesus himself reached out to.

I once attended a conference on the church and disability where Dr. John Stott was the keynote presenter. After his presentation, I followed him and was able to get off a brief question. "Why is it do you think, Dr. Stott, that the church has been so unresponsive towards persons with disability?" His response was basically, because the church is simply being disobedient. Wow. I have never forgotten that brief interchange. It is true, that the church is disobedient. Yet we mask our disobedience under a variety of excuses.

Imagine meeting the Lord and saying,
"You know, we would have fulfilled the great commission, but it was just too expensive.
Or, we would have fulfilled the great commission, but it just wasn't a priority.
Or, we would have fulfilled the great commission, but if we did, lots of the members of our congregation would have left.
Or, we would have fulfilled the great commission, but we didn't know where the people were.
Or, we would have fulfilled the great commission, but nobody in our church wanted to provide leadership.
Or, we would have fulfilled the great commission, but we didn't have any training.
Or, we would have fulfilled the great commission, but we thought that because we pay taxes that the needs of those people were being taken care of.
Or, we would have fulfilled the great commission, we were worried about our children if we brought those people in.
Or, we would have fulfilled the great commission, but those people disrupt the worship service, by clapping wrong, or not whispering, or having social skill deficits.
Or, we would have fulfilled the great commission, but when we ask for prayer requests, they always air their dirty laundry.
Or, we would have fulfilled the great commission, but if those people come we can't cover the same material in our Bible classes that we typically would.
Or, we would have fulfilled the great commission, but those people are a black hole for service.
Or, we would have fulfilled the great commission, but those people never get better anyway.
Or, we would have fulfilled the great commission, but I could never do that, it takes a lot of patience to work with those kinds of people.

It takes more patience to work with a disobedient worldwide church. Each of the above are real excuses I have heard for why churches/people are not working with persons with cognitive disability. It is easy to see why Dr. Stott portrayed the church as disobedient.


Wednesday, July 28, 2004

Ruminations on typical things

Our church is putting together a pictorial church directory.  We decided that all of the members of our class for developmentally disabled adults should be included in the directory.  So we scheduled portrait settings with the photographer and had the pictures made.  Not only would our members get to be in the directory, they would get a free (to them at least) 8x10 professional portrait.  This past Sunday, we passed out the photographs.  But we didn’t just pass them out, we unveiled them by pulling each picture out of the envelope in front of the entire group.  The unveilings were followed by many oohs and aahs as well as “What a great picture of you!”  It was great fun.

It struck me, however, that most of these people probably never had had a professionally made photo before.  Many questions flood my mind as to why not, but the fact is that this experience was novel for them.  I wondered about other experiences which persons without disability regularly enjoy which persons with cognitive disability have not had the opportunity to engage in.  These kinds of things do not necessarily have to be prohibitive in cost, like sitting for a photo might be.  Just things which people without disability who weren’t raised in an institution or group home, or who as adults have had their opportunities limited for whatever reason, have the opportunity to do.

Some of these simple things are easily provided by regular families, by just allowing participation in the regular lives they live.  Some of the things which I and my family have done can provide examples. 

-For a while, I was having coffee every Friday morning with a man who was a friend of mine.  We talked about his work, my work, our families or friends, things we had seen on TV, our successes and frustrations with life.
-Occasionally, we have some friends up to the house to watch a movie.  We have nachos or hotdogs, and hot drinks if we sit outside on a cold night.  Sometimes we will play table games.
-Once in a conversation, a woman we know indicated that she hadn’t received any Christmas presents that year from her fairly large, yet dysfunctional family who lived nearby.  The following year, and the past several years since, she has spent Christmas day with us and our family.  Everyone loves to give her presents from our immediate and extended family, and she sits happily opening them for a long time.
-A friend of mine needed a few extra dollars and asked if he could do some work for us.  Occasionally, we have him up to wash our cars.  We pay about 10$ a car, and he usually has lunch with us as well.  But the best part is that we then complain to him till the next time he comes up about how dirty our cars are, and how if he had done a good job they would still be clean (by the way, we live on a dirt road).
-Every Sunday morning I meet with a couple of guys and have a donut.  We each pick out our favorite grab a cup of coffee and talk to each other or the people who walk by.

The experiences are no different than any someone would do in a typical day.  The only difference is that the experiences I described above are with friends of mine who are mentally retarded.  They are the same experiences you would have with anyone else.

People have to get over the mental hurdle that people with mental retardation are so different that somehow one can’t do the same things he would typically do with someone who isn’t disabled.

Tuesday, July 20, 2004

Ruminations part 2

Yesterday I discussed my desire to develop some form or structure which would link regular families with various persons who are disenfranchised, particularly those with cognitive disabilities.  A while back the term "life partners" struck me.  I am unsure at the moment whether there is some sort of legal aspect to what I am proposing (although in one relationship with a disabled friend, I have the authority to make medical decisions, by his request) although it may develop into such.
The idea is that a family will express the desire to life partner with a disenfranchised person.  In an adoption kind of way, the church would facilitate a meeting together between the family and the person with whom they would enter into a relationship with.  It could be as simple as a meal at McDonalds, or at the family's or disabled person's home.  Should a friendship begin, the folks are on their own to schedule future meetings.  Ideas for meetings and activities could be supplied by the church which the life partners may or may not choose to follow.  However, some minimal standards might be set, like . . .
     -face to face meetings once per month
     -a conversation twice per month
     -sharing of phone numbers
     -the opportunity for meeting with persons within the church who have knowledge about  
          persons with disabilities to assist the family should they have any questions
     -the opportunity for meeting with persons within the church who have knowledge about
          families to assist persons with disabilties should they have any questions
     -holiday get togethers
     -birthday parties
As I write this it sounds so simple, and in some ways so easy.  It needs to be fleshed out much more, but in actuality what is needed is very simple.  Simple caring for others, movement outside of one's comfort zone a bit, seeing one's family as a tool for ministry, trying to understand others who people generally don't care to understand.
When I shared this with a friend, he told me that it might sound simple to me, but in reality it is very difficult for others.  Somehow in the sharing of this model, the simplicity of it needs to come through.
This is also a way for the church to reach out to the larger community.  Churches might contact local school districts, indicating that there are people who want to adopt a family of a child with disability in order to help the family with respite, and provide a church home where the family and child can feel welcomed. 
Adult service programs could also be contacted as a means to link families within churches with adults with disabilties with whom a partnership can be developed.  These partnerships could be with a group home, or individual adults living in the community. 
More to come on this.

Monday, July 19, 2004

Ruminations on a model for churches

For years, I have wondered about the kind of model I would propose for supporting persons with cognitive disabilities in a local church.  On the one hand, such a model needs to be natural; it needs to be something which is a natural growth out of the life of the church.  Good people have proposed a variety of models which borrow from those developed by the state, state agencies, secular groups.  This is not to say that these groups have nothing for the church, however, it seems the church, a church which really believes in helping other members and fellow men in general could come up with something more .
Recently, I have been ruminating over an idea which I think has some merit.  It has partially grown out of interactions I have had with a homeless man I know.  I can't say he would consider me his friend, although I have provided assistance to him on occasion, have gotten into shouting matches with him on the phone, and have discussed the relevance of the church to the problem of homelessness in general.  Anyway, in spite of problems he faces with mental illness, his feeling is that if some family would take him in, that would be the start of a successful program that would put him on the path of recovery.  The notion of average families helping disenfranchised people is what has struck a nerve with me.
I want people, regular people and their families to know persons with mental retardation for the same reason others want white people to know black people and black people to know yellow people.  That reason is that when such people get to know each other, stereotypes, fear, distancing, negative attitudes, fall away and are replaced by understanding, acceptance, empathy and caring.  I want every family in my church to know a person with mental retardation by name.  I want the children of every family in my church to have had lunch with a person with mental retardation and to know that person by name.  I want every person with mental retardation to know the phone number of a family in my church whom they can call when they have a problem, who will be there for them, who will care about their problems, who will help them out on occasion.  I want that because that will change the person without disability, will change the person with disability, will change the church, will change the community and perhaps most of all, would be an evidence that we as a church are finally being obedient to the example of Christ provided for us.
DC Talk the musical group has stated, "a physical world creates a spiritual haze."  That is so true.  I never cease to wonder at the indignation of families of persons with disabilities, or persons with disabilities themselves at the treatment they receive from those around them.  These same people were oblivious to the experience of disability till they experienced it themselves.  But people without disabilities are only that way for a while, they will eventually have a disability of some sort either themselves or within their family.  For example, I see a further degrading of my already poor eyesight, and if the Lord gives me 20 more years, I can't imagine what my knees will be like by then.  The certainty of disability is right up there with death and taxes.  Yet a physical world creates a spiritual haze.  How might we cut through that spiritual haze?
Perhaps some sort of a program which links families with disenfranchised persons of various types might be the answer.  Not everyone can make the committment required to be a member of a L'Arche community, however, everyone can make some sort of committment to a neighber.  People will be able to deal with more or less severe disabilities according to who they are.  I for one can work with a mentally ill, homeless man, or another emotionally disturbed man whom I used to know because of who I am, my personality, etc.  Others would be scared or threatened.  But there are plenty of sweet adults with down syndrome, for example, who could use a friend, a family to fill their lives.  The interaction would not be one sided either.  Both would gain.  There are children/adults with autism and their families who would gain from interactions with other families.  Families who would take the time to learn how to baby sit for the autistic child sometimes.  There are group homes in the community where sweet adults with severe developmental disabilities live, where a visit a couple times a month would make a huge difference.  Yes there are staff at these facilities, but anyone who has ever been in a hospital knows the difference between being visited by the nurse and by a family member or friend.
So what am I proposing?  As the title states, this is just ruminating, but some kind of linkage between persons with and without disabilities, particularly interactions in which regular families get to know persons with disabilities and their families.  I would love to pull any 5 year old child at my church aside and ask, do you know someone with mental retardation, someone with a disability?  I would literally cry if I could consistently hear, "Yea, Rosa is coming to our house for a barbeque today!"
We can get there.

Wednesday, July 14, 2004

Why so accepting?

Continuing on with my last entry, I wondered why persons with mental retardation (in particular) are so accepting of others, almost an unconditional acceptance.

You might say, that because of the state of need they find themselves in, they have somehow learned to be accepting in order to get what they need from others. I think there is some truth to the fact that acting politely has been pounded into them by parents and others. I remember a woman who had down syndrome who was a friend of mine who would precede literally anything she would say with, "Now, I want to say this in a nice way . . ." Obviously those around her had constantly reminded her to say things in a nice way, and it became a part of her vocabulary. However, people who can help them and people who cannot help them are both treated with the same general level of acceptance. So the notion of being nice in order to "get something" is really pretty much foreign to these individuals.

You might say they are accepting in order to get friends, because they lack friends. I am sure there are those who are lonely for whatever reason (parents won't let them out of the house, aspects of their disability, etc.) but although they may lack friends within the nondisabled community, they are often rich with friends within the community of persons with disabilities. In interviews I have done with adults with disabilities, they pretty much equate their friends with and without disabilities. I have also noticed that the network amongst persons with disabilities in the community can be pretty extensive.

But there are characteristics of persons with disabilities which endear you to them, make you feel accepted. Its funny that in interviews with adults with disabilities, if I ask who their best friend is, they always say me, and if my son Josh is in the room, they also say Josh or whoever else is with me. Now as with other people there are some with disabilities who I am very close to and others with whom I am just friends. But they characteristically, will take the person close to them at the moment, in the room, and refer to him as their best friend. I know caseworkers who have been confused by this. Because they hear such affirmations from disabled adults they believe that that is the case, but it is not. This is not a put down of the caseworkers and perhaps they are the best friend of some of their clients, but rather it is a statement about persons with disabilities. As in the old Crosby, Stills and Nash song, they truly do love the one they are with.

Because of characteristic difficulties with social skills, the manner in which this acceptance is shown is not always understood by those without disabilities which causes some of the distancing. A fellow I know, whenever he sees me, will steal my keys, or tickle me (I haven't been tickled in many years, except by him), or grab my hand and refuse to let go. All these are expressions of affection by him. But he did these things the first time we met. If people aren't in an accepting mindset I think they probably will reject these kinds of advances even though they are innocent and friendly on the part of the individual with disability.

Another reason persons with mental retardation are so accepting is that they don't always understand the subtle social cues indicating rejection. These minor social skill deficits will at times get them into trouble in the workplace. These same inabilities to recognize social cues will cause them to be undaunted in social relationships. They themselves are different. If for some reason they don't like you, they will say so; you pretty much always know where you stand. Whereas we in our socially appropriate manner will give you subtle cues of rejection becoming increasingly more overt in our rejection. There is something refreshing in someone honestly saying to you, "I don't like you because you use bad language," or "I don't like you because you hit other people" as compared to speaking about others behind their backs or simply avoiding them.

By way of example, we recently had a new member come to our church program for adults with disabilities. The new guy, a big fellow with down syndrome, came in. I immediately plopped myself down by him and started to make conversation. "Where are you from?" "Do you have any brothers and sisters?" "What do you like to do for fun?" "What kinds of things bother you?" After answering all the questions preceding, he answered the last question, "I don't like people asking me a bunch of questions." Great answer, great honest answer. We have continued to grow in friendship, and I know I can count on him to be honest with me.

One can never take a whole group and characterize them in one particular way. That is called stereotyping. However, just a persons with down syndrome look like they are all from the same family, I think there is a characteristic of persons with cognitive disability, with mental retardation, which makes them similar in the ways in which they interact with others. In the midst of their mental retardation, God gives them in some ways, a social advantage. It is a strange combination of honesty, a lack of defensiveness, gregariousness, and social ineptitude. There is also an ability to be forgiving which I think is beyond that of the rank and file nondisabled person.

I have always thought that persons with down syndrome have the perfect social make up to be great Wal-mart greeters.


Tuesday, July 13, 2004

Models of acceptance

A few weeks back, I went to pick up a man with disabilities who lives at a retirement home, mostly for seniors. Typically when I go to pick him up, he is asleep in his chair, and has to go through a variety of varying routines before we can leave (which is why I am pretty much always late for church). Anyway, as I waited for him, his room mate was awake, sitting in a chair. Before him sat his breakfast which he was largely unaware of. He is a man of about 70, obviously in later stages of alzheimers disease. As he sat there, he had a running diatribe with someone who wasn't there, but was very real to him. The conversation went something like this. " You (deleted) I'm going to kill you. I am going to (deleted). You (deleted)." I think you get the idea. Violent language littered generously with various profanities and racial slurs. On the wall there were pictures of the man with family members, with children, so obviously he was definately not what his language now makes him appear to be. (I shudder to think what might come out of my mouth were I in his same condition).

Anyway, as we were walking out to the car, I asked my friend if he liked his room mate. "Yes" he replied. He told me his name and said he liked him although "he doesn't talk much to me." I was surprised at his response.

But then I thought of other people with developmental disabilities I have known. I know a guy, good looking, athletic, muscular build who also has mental retardation who would always introduce me to his latest girlfriend. I found it interesting that such a good looking guy would choose girlfriends who were very severly disabled. Sometimes not, but it was obvious that appearance had very little to do with how he chose his girlfriends. I doubt that he consciously had rejected the standard that secular society places on good looks, etc., however, he had. When I would ask him about a girlfriend, he would talk about how she worked hard at the workshop, or was very friendly, or had a nice smile.

It is this type of acceptance which originally amazed me about persons with mental retardation and drew me in to the point that I wanted to spend my life with them. They accepted me with a full acceptance independent of who I was. They loved me openly, without the kinds of walls that we put up between ourselves in relationships even between friends. Acceptance is a wonderful thing.

How can people who are so accepting of others be often so rejected by them? Hmmm. I see the image of God in the manner in which people with mental retardation love others for who they are, independent of the things which would typically cause people to be stand offish (appearance, social skills, hygiene, disability, etc.). They show acceptance and simply hope for acceptance back. Oftentimes, even if it is not reciprocated, they press on with love and acceptance. If you give them a chance you will find them a model for you as to how to accept others.


Thursday, July 08, 2004

The focus of skill development

In the design of educational programs for students with cognitive disabilities, Dr. Lou Brown at the University of Madison, Wisconsin stated in a 1979 article that education should provide
chronologically age appropriate
functional skills
in natural environments

It is wise to consider these aspects in designing church programs for individuals with cognitive disabilities.

Briefly, chronological age appropriate means you interact with these people on the basis of their chronological age, not their supposed "mental age." Treat adults like adults in all ways possible. Treat 10 year olds like 10 year olds. To treat them otherwise will only further stigmatize people who are already experiencing some degree of stigmatization on the basis of their disability. I have mentioned in this blog that I am a buddy to a young man in a Sunday School program. One day, he brought a purple teddy bear to church. Now if he were a preteen girl, that would probably be fine. However, as a preteen boy that would only bring negative attention to himself. I pulled him aside and asked him if any of the other boys in the class had brought their teddy bear to church. He replied "No." "Well, maybe you shouldn't bring yours either" I replied. There is absolutely nothing wrong with a young boy carrying his teddy bear, however, I know how that young boy will appear to his peers, so I will encourage him not to bring the bear to reduce the stigmatization.

Functional skills can be defined as skills having a high probability of being required of someone. For me, profesional writing is a functional skill. However, professional writing was not a functional skill for my father who was a tool and die maker. For him measurement to thousanths of an inch was a functional skill. For me it isn't even on the radar screen. There are skills which are functional for successful functioning of adults with cognitive disabilities and those which are not. It is useful for the Sunday school teacher to consider these. I remember a lesson provided to a group of adults with mental retardation about the conflicts between David and Saul. The take home lesson was that David could have killed Saul but he didn't, so wasn't he a great guy because he didn't kill him. You or I might be able to make a connection between this conclusion and our lives (having the ability to get revenge or do evil to another but not doing it because we want to do what's right, etc.) but this was hardly functional for those for whom the lesson was designed. In contrast, there was a lesson about walking away when someone is abusive to you. I think that to this day, if Gary (a guy in the class when the lesson was taught) if he saw me would say, "Jeff, do you know what I am going to do if someone calls me a fat pig (the insult of choice for that lesson), I am going to walk away." In this man's life, such verbal abuses were common, so that the remedy of walking away was a functional response. We need to consider the functionality of what we are teaching when we teach any Biblical lesson to any group for that matter.

Natural environments means that we teach the skills in the environment in which they will need to be evidenced. This is more difficult, particularly with behavioral issues, however, we can still do what we can to facilitate the generalization of the skills to the natural environment.

Overall, Brown's emphasis is to look at the kinds of skills that adults need to be successful and teach them to students with an eye toward the longitudinal development of skills. If Sally needs to be able to interact socially with other adults in a workplace as an adult, what can I do to help her to move toward that outcome as she stands before me as a 10 year old. The same might apply in regards to spiritual development, personal disciplines of the Christian faith, quiet times, etc. We think of the behaviors which make for successful followers of Christ in adults and develop them in the persons who come to us, whatever their age.


Wednesday, July 07, 2004

Ideals for church ministry

I sometimes wonder whether I really know what specifically I am after when I think of the ideal for involvement of persons with cognitive disabilities in the church.

I know I want the church to be accepting. I think there is an institution wide problem of perception. A misunderstanding about who people with disabilities are. In its best form it is simply paternalistic and condescending. People with cognitive disabilities are treated as if they are children. In its worst form, it is theologically incorrect and even evil. People with disability are seen as the result of evil, or lacking faith. The response might even be, "But they are the result of evil. Disability is the result of the Fall" which illustrates the point. As true as that statement might be, I have compassion on the child of the alcoholic, I don't blame the child for the sins of the parent. If disability is indeed the result of sin (from the Fall or parents) the victim should not be the one blamed. The sin should have little or no impact on interactions (other than perhaps increasing compassion), as those interacting with the person with cognitive disability carry the same burden of inherited sin.

I want people, Christians overall to be more patient and more accepting. I know of a situation where a woman with moderate disability was excluded from a Bible study. As it turned out, the people in the Bible study basically just didn't want her there. There wasn't anything in particular that she was doing "wrong." How can this happen in a Christian church? If the reason I go to church is for me, then it can easily happen. I want comfort, sameness, no confrontation, music I like, and my donut to be fresh. If I go to church to meet with God, I want accessibilty and acceptance for those around me so that they can have a positive worship experience. I want to be in a place where people are serious about taking the Gospel to the world, to all people and welcoming those people when they come to the church.

I want the church to be willing to adapt what it does in order to include persons with disability. Rather than saying "we have no place for you" the church should be saying, "we will change so there is a place for you." We shouldn't say things like, "that is not a priority for ministry" or "we haven't the funds to start that" or "we haven't the training to do that" all of which are just excuses for a lack of interest. We should be saying, "We don't have anything today for your child with autism, but can you give us 2 weeks and we will be ready. Please give us 2 weeks so we can have the opportunity to serve you, your child and your family."

I want people to see their responsibility toward others in the church as a 24/7 kind of thing. I am speaking to myself when I say that we need to care more about all the people in the church. In regards to persons with disability, phone calls, an occasional lunch out would be great, and so appreciated. Many persons with cognitive disability, particularly in the town where I live, consider a lunch at a burger place a big deal as such extravagances are often not within their budgets.

I want families to teach their children about persons with disabilties. I want children to have experiences with persons with disabilities. To know people with cognitive disabilities by name so they can understand who they are and develop relationships with them. It is through this kind of understanding that fear and discomfort goes away.

I want people in the church to be prepared to live in the world. Obviously instruction in the Bible is critical. Instruction in other areas of life is also important. Using our subject, instruction might be provided in interacting with persons with disability; how does one interact, what would you say, what might you do. This instruction is perhaps necessary not because there is some secret about it, or some special knowledge that is needed, but just to break down the intellectual walls which cause people to believe that there are special secrets or special knowledge that is needed.

I will never forget the first time I was given instruction in what to do if someone has a seizure. I expected complicated instructions about, well I don't know what, but I expected complicated instructions. When a person has a seizure, the best thing you can do is to help them to the ground, if they haven't already fallen down, and just allow them to go through the seizure. You might keep track of how long the seizure lasts or keep their head from banging against something hard and you want to help the person once they come out of the seizure, be sure they are ok, don't need anything, etc. but otherwise you basically do nothing.

I want people within the church to understand that the way you interact with persons with cognitive disability is no different than those without cognitive disability.


Monday, July 05, 2004

What would the church look like?

What would a church that always includes all types of disenfranchised people look like?

What would it look like organizationally?

There would have to be many channels of communication set up and open to deal with the many isues people would have both as persons with problems and with persons with problems. Because some of those who are disenfranchised are used to "working the system" there would have to be ways of checking their stories to both have some level of stewardship over the resources of the church, for reasons of safety for the members (children and adults).
Communication would be imperative in supporting such people with their various emergencies.
Communication would also help the church leadership to keep on top of the needs of all members of the church, particularly those who are disenfranchised. Perhaps particular pastors, leaders or lay people would be the first points of contact through whom someone might become enfolded.

What would be characteristics of the people there.
Church members would need to come to church prepared for the unexpected. Church services might become a bit more unpredictable due to the social skills (or lack thereof) in the membership. But the people in attendance would be just a genuine as those already in attendance in regards to their desire to worship, to grow, to change. Their backgrounds, disabilties, etc., might cause them to come out of a different background, however.

Other potential characteristics might include,
fresh - a certain unpredictability might also bring freshness to the situation
unpredictable - when things are unpredictable, they require another whole set of skills. You become less brittle in the way you do things. You have a plan and a program, but it adapts with the situation. The flexibility which results is a good thing.
accepting - because you are committed to enfolding all types of people, particularly those whom society has often rejected, your level of acceptance expands. You begin to worry less about how someone dresses or looks or smells. The range of "normal" expands as you meet more people who are outside of what is typically considered to be normal. For example, a friend of mine with cognitive disabilities talks a little too loud during the church service (a service for largely white people in an affluent suburb). I visit other churches in other settings and I find that behavioral standards for churches are different. An African-American pastor once spoke at my church and wondered out loud whether the people were paying attention because they were so quiet.
full - the church would be full of both people who are disenfranchised and those who desire to serve those people.
ministering - to others would be the rule of the day. I remember Lake St. Church in Chicago which did include many disenfranchised persons who required a high level of service to be eligible for initial or ongoing church membership (I believe). Not an entirely bad idea.
needs met without programs - sure there would be many programs within the church, however, much of the work of the church which should be encouraged on a one to one basis would happen naturally. Programs are not to be disdained, however, individuals or families helping others independent of programs should be encouraged.
prepared for this role - obviously people would need to be prepared for this role. There would have to be discussions about what is appropriate or inappropriate within a Christian church setting. As and undergrad, I took a course in "contextual theology" the jist of which should be a must for all churches. Can you have communion without bread, or grape juice? I sometimes wonder whether churches believe you could. Could you have a worship service without a sermon? Could you have singing without people with microphones up front? Preferences which seem almost wrong, are often far more the result of cultural differences, or even what people have become used to more than something ordained by scripture.
character of worship would change - at times in church I try to imagine what the persons with mental retardation who sit next to me are thinking about what they are hearing. I listen to them sing the worship songs with the words projected on the screen and imagine how I would do singing those songs. If I look away from the words, I find I sound a lot like they do, remembering a few words when I sing. Obviously the entire character of the worship can't change to better include a few with disabilities, for example, however, I wonder what thought is put into planning for persons who are dyslexic or mentally handicapped, etc.
many would leave - finally, in such a church many would leave. They want their God to be predictable, and they want him to be worshipped in an predictable manner. Don't change the order of the worship, the songs sung, the version of the Bible, the social skills required, the way the offering is taken, or to some extent who they have to sit next to. If the church really started bringing in everyone, many would leave because I honestly believe that there are those who don't want everyone there. In fact they would rather have particular persons not there then have their familiar worship experience disrupted.

More on this later.


Friday, July 02, 2004

We need to lead the way

Several years back, a friend of mine, a professor at a state university who is not a Christian to my knowledge, sent me a book he had written about natural supports to adults with disabilities. It was an interesting treatment of the topic. However, as I looked in the index for words like "church" or "religion" or even "faith-based" there were no listings. I responded by sending a hand full of articles which I had written on the topic and a brief note, "Have you considered this type of support."

Unfortunately, that is the perspective taken in much secular writing about the role of the church in supporting persons with disability. But I must admit that over the years when I have spoken publicly to secular groups about the potential of church support to persons with disabilities, I am sure to talk about the potential for support.

If you have read many of the entries in this blog, you get the idea that I am exhorting (critical in a positive way, I hope) the Christian church to do more to seek out and support the disenfranchised persons in the community. I honestly believe that if the Church was working harder at this, it would be impossible to write a book about supports for persons with disabilities and not mention the Church (I honestly still believe there is a lack of academic rigor evidenced by those who do write about support and don't mention religious groups). In a nutshell, I think the problem is that the Church is allowing the secular world to lead the way in so many areas of life, particularly as they relate to the works of the Church. So we put in ramps for wheelchairs when the ADA requires it. Why were Christian churches not the first buildings in the community to install ramps for access? At times, state agency caseworkers bring people with disabilities to the church of their own initiative. Why weren't we out there trying to recruit these people? Christian parents stay home from church because there is no place for their autistic son in the Sunday school class, or other children or families feel uncomfortable. The Sunday school should be redesigned to accommodate all children. Perhaps we could come up with the model for the delivery of educational services to children. We certainly have the mind of God on our side. I can't imagine that would be a logistical problem He couldn't figure out.

But the world looks at the public school system where integratiaon zealots have made efforts to integrate all students to the point of being goofy, and Christian parents keep their kids with disabilties at home because the Church has nothing for them. Man, this has got to change!


Thursday, July 01, 2004

If an 18 year old bball player can figure out what to do . . .

My first real interactions with persons with disabilities was back in 1978 at Wheaton college. My brother, Steve, was working in a recreation program for persons with cognitive disabilities and he invited me to visit it with him. I immediately fell in love with the people there, partly because of their honesty, partly because their openness and lack of social walls.

Anyway, one of the guys there was named Johnnie. Johnnie was about 17 and had autism. Now I had never heard about autism, had never read about autism, had no experience with autism. I found him fascinating and began to watch him whenever I went to the program. Eventually I came up with a plan to try to develop a friendship with him. I mimicked some of the physical actions he would do, like rocking. I mimicked some of the language he would say. He enjoyed brief tickling of his ribs, so over a relatively short time I taught him to come up to me and say "Tickle me." Nothing fancy, I just told him I wouldn't tickle him until he said "Tickle me." Well, because he was echolaliac, he would repeat the last phrase I would say to him, so he would always end up saying "Tickle me." The cool thing was when he began to initiate the phrase himself.

Later I came to find out that my approach wasn't too bad. It actually has some of the components which one would find that are good ways of working with a person with autism. I had no training, but with a desire to interact with him and a little observation, was able to come up with a plan and implement it.

I was in a meeting yesterday where I heard again the excuse that programs for persons with disability do not exist in churches because people don't know what to do, don't have any training. I tire of that excuse. I admit that deep down I am a special educator, however, I as an 18 year old person who had up to that point spent most of my time developing my jump shot was able to figure out something to do.

When people within churches, or church leaders say they don't know what to do, I think they have either bought the secular lie that you must have some degree or type of training to do anything for someone else, or just don't care. It is time that the church stepped back and looked at some of its practices, particularly as they relate to persons with disabilities. Many practices are based on secular principles, not the principles of scripture. Others are due to lazy theology which also indicates a lack of caring. Others are due to the general malaise of a Christian church that doesn't make persons with disability a priority, perhaps again because they are running their churches like businesses rather than like churches.

At some point faith has to kick in when one is using the financial excuse for doing nothing.

At some point personal responsibility for one's neighbor has to kick in over thinking it is someone else's responsibility.

At some point the desire to serve must overwhelm the "lack of training" which so often is the excuse of choice for doing nothing.

At some point people with disability have to be seen as people rather than the result of sin, or a black hole for service, or some other negative stereotype.

At some point people who aren't as yet directly affected by disability have to take an interest and do something rather than waiting to be effected themselves and then complaining that the services are weak or lacking.

At some point those who are affected by disability must see disability as more than just their own family member and broaden their responsibilities to others with disability.

At some point professionals and family members of persons with disability have to recognize that they have expertise which they can share beyond their own work day, or personal family experience in order to improve the lives of others with disability and change "The Church" to the kind of receptivity toward persons with disabilities exemplified by Jesus himself.

I don't buy the "I don't have any training" excuse anymore, and if you give that one to me, I will tell you to your face that it is just an excuse. Do something an be corrected by those with training who might be able to help, or, God forbid, do something and ask for guidance from God's Holy Spirit who is eminently able to guide you. But please, no more of the excuses about training.