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.

McNair

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.
McNair

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.
McNair
 

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.
McNair
 

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.

McNair

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.

McNair

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.

McNair

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.

McNair

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.

McNair

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!

McNair

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.

McNair

Ga-way

As I have related elsewhere in this blog, I used to work at an intermediate care facility for adults (over age 18 at that time) with severe mental retardation among other developmental disabilities. There are two stories I thought I would relate today. One about Bert and the other about Shaquanda.

Bert was a man with severe mental retardation who was confined to a wheelchair as a paraplegic. His upper body was pretty much fine, and he was well able to move around in his chair. He had dark hair and a bit of a long face. I think I connected to him because other than a difference of an hour or so, we were exactly the same age. I sometimes wondered if he might have been born in the same hospital as I. Yet there I was in the budding stages of a career in special education, he in a place he would probably remain for the rest of his days. He had no language to speak of other than saying "Ga-way" all the time.

I met Shaquanda quite by accident. As I roamed the halls of the facility, I would walk past people who appeared to be little more than piles of humanity. They were balled up and contractured. Their disabilities were so severe, the were literally moved from their beds to a mat, then the mat was moved, perhaps, and then back to their beds. They were nonverbal, unable to feed themselves or take care of any other personal needs, largely unable to move. Anyway, one day as I was going about my business at the facility, one of these little blobs of flesh said "Hi!" to me with all the personality she could muster. I immediately stopped. I learned from her that her name was Shaquanda, and from that day forward we spent many hours together having the largely one sided conversations you will often have with persons with severe mental retardation.

Shaquanda was always there looking for someone to take the time to interact with her. She saw the activity around her, but it took a mighty "Hi" from her to gain the attention of those around her. I must admit that although I then tried to interact with others like her, there was no response. I think at times I was probably more of an irritant to those people who had become used to being ignored (assuming they were able to even make that determination).

It took months for me to finally figure out what that one thing was that Bert was constantly repeating. It was literally his only language. His phrase was the words he heard most often in the place he lived to the point that he as a non verbal man was able to repeat them. Sadly, "Ga-way" was "Go away." What words would a person with mental retardation learn from the congregation at your church?

McNair

Aunt Peg

My Aunt Peg died last night. She had lived a long life, much of it alone as her husband died relatively early on in their marriage and she never had any children. She grew up as a tough kid on the streets of Philadelphia. An orphan, she was taken in by a woman everyone in the family, at least the older ones, spoke of respectfully as Aunt Hattie. She must have been quite a woman herself. A big heart to take in these girls (my grandmother lived with her as well)and the toughness to rasie these girls to become the women they became.

The last few years of my aunt's life were particularly difficult. The loss of independence coming with moving into a Christian retirement home was a severe assault. Her faith was never really something that the family was entirely sure of. I often offered to sneek in a Brandy Alexander (her favorite drink, and I think I was only half joking) but she was worried she would get thrown out if she was found out. But she was a tough pragmatist and realized it was for the best. Ultimately she embraced her new home. Things appeared to be going about as well as they might, when she awoke one morning, at about age 91, totally blind. I don't think functionally she ever really recovered from that. But then, how would one? A younger person would think of the years ahead. A 91 year old thinks of the years remaining, and trying to live them out with some degree of comfort.

I remember visiting her (I live in California, she in New Jersey) several months after the onset of the blindness. She spent a great deal of time crying over the difficulties she was facing. She just kept saying, "What did I do for these things to happen to me?", and "I just wish the Lord would take me," although I am not entirely sure she knew what he would do with her once he had her. During my visit, however, I remember having a discussion with her which I think helped her, and certainly has caused me to stop and think over the intervening months and years. She spoke about how discouraged she was and that there was no purpose anymore to her life. I asked her what her purpose was before she became blind and she went silent. "It seems to me your purpose before you were blind was to try to do what's right, and to acknowledge the Lord in everything. So even though you are now blind, your purpose in life is still the same." I think I helped her a bit because she didn't cry as much during the rest of our visit.

You know the requirements of the Lord for us are pretty much the same independent of who we are mentally, physically, etc. Micah 6:8 says "And what does Jehovah require of you, but to do justice, and to love mercy and to walk humbly with your God?" People with cognitive disabilities are well able to do what Jehovah requires of them. I, however, see them as disabled, devalued, damaged. Yet I myself also struggle to walk humbly.

McNair

Unschooled and ordinary but had been with Jesus

In the book of Acts, the story is told of Peter and John healing a man who was lame. After healing him, they were arrested and went before the various Jewish leaders. The comment is made in Acts, "When they saw the courage of Peter and John and realized that they were unschooled, ordinary men, they were astonished and they took note that these men had been with Jesus." Acts 4:13 (NIV)

Wow, they were unschooled and ordinary men. As I shared this verse yesterday with the group of adults with mental handicaps with whom I work at my church, I was struck with how that verse applied to those in the room. They are all pretty much unschooled and ordinary. At the same time I can say to you that they are mostly very courageous. One fellow, Mark, often tells of the teasing or hassles he receives at work or in the community because of his disability, or because he is a Christian. Typically his response is "You need the Lord" which is followed by further ridicule from his detractor. But I look at Mark and see his courage while recognizing that he is an unschooled and ordinary man . . . or is he?

The verse goes on to say that they "took note that these men had been with Jesus." I see that in many of the Christian adults with developmental disabilities that I interact with. You hang around with them and you realize that many of them have been with Jesus. Not in a physical sense as with Peter or John, but in a sense of being with Jesus through faith.

Call it a lack of social skills leading to the ability to not know better, but the honesty of persons with cognitive disabilities seems courageous to me, and they may not understand many things, but they understand their basic faith, and are unabashed in speaking it.

McNair

Love and trustworthiness

I remember as a 19 year old, some of my earliest interactions with persons with disabilities. As a student at Wheaton College, I became friends with a woman in a Friday evening social group we ran for adults with disabilities named Paula. Paula had down syndrome with the accompanying mental retardation and sweet disposition. She liked to draw pictures with markers.

One day I heard that Paula was in the hospital for headaches. I remember going to the hospital and walking into her room. She gave a friendly greeting and we began a conversation (I don't remember what it was about). I was having a nice visit, when suddenly she began wildly flopping around on the bed. I had seen people have seizures before but this was something different. She was aware and crying as she would flail which isn't something you typically see with a seizure. I got the nurse, and after a minute or so she stopped and lay still again. I stayed and was able to continue the semblance of a largely one sided conversation.

When I left the hospital room I as very angry with God. It wasn't enough that he made this young woman mentally retarded, he also had to give here severe headaches on top of it all? It didn't make any sense.

To those who have faith the resolution I came to will make sense while to those who don't it may seem a cop out. But as I worked through this experience I came away with two characteristics of God that the Bible was crystal clear on and even to this day, I cling to these when I don't understand what I see around me. Those two principles are that God is love and that God is trustworthy. He loves me and he loved Paula and both of us can trust him, even though neither of us was quite sure about it at the time.

In the last few years of my life I have found that Proverbs 3:5 is the piece of wisdom which most encourages me, and gets me through situations when I am struggling. It says, "Trust in the Lord with all your heart, don't lean on your own understanding. In all your ways acknowledge him and he'll make your paths straight."

The growth in my trust in God took a major hit and then made a significant jump in 1975, and has continued to grow to where it is now. In the same way that I was somehow a part of Paula's spiritual journey (through interactions, Bible study, etc.) she through her disability became an important part of mine.

McNair

Confession of faith

In efforts to make a determination of whether an individual is or is not a Christian, people will attempt to determine whether or not an individual has made a "confession of faith." Ostensibly, this confession of faith implies that the individual in question has made statements to the effect that, "Jesus is Lord," or "I believe in Jesus," or something the the effect that "Jesus died for my sins." Each of these affirmations are good and proper. One might indeed infer that those who make such claims are Christians. However, one must also be careful about considering this form of confession as the exclusive manner in which a confession might be made, or even the most appropriate form of confession.

When someone makes a verbal confession, the underlying assumption on the part of those "receiving" the confession is that the requisite understanding of the principles underlying the confession are present. However, unless described specifically, the hearer has little idea of what has been the thought process which has led the confessor to his statement?

For example one might say "Jesus is Lord" in the same manner as someone might say "Dachshund is dog." That is, a dachshund is a kind of a dog, or that although a dachshund is a dog, I don't want a dog. One might also say, "I believe in Jesus" in the same manner as one would sway, "I believe in gravity." In this case, Jesus is some individual in the background of history that I believe existed and was by all accounts a good man. One might even say "Jesus died for my sins" without an understanding of what Jesus did, or what my sins are or mean. The point is that verbal confession although useful, should not be considered the exclusive confessional form.

Might one evidence a faith committment without the typical outward croppings of a reasonably described understanding of faith and the accompanying verbal confession? Obviously if one was unable to speak, she could not tell her story, although perhaps she might be able to tell in written fom. Yet, what if one could not relate one's confession in verbal or written form, due to disability, or other circumstantial reasons?

Imagine one having made the "battlefield confession" and then dying as a result of the enemies skill in marksmanship. A confession would have been made, ostensibly to God, to whom it most importantly must be made, but there was no opportunity for others, other people to have heard the confession.

I know an individual who all her life has been somewhat wishy washy in regards to where she stands in relation to Jesus. Neither I or anyone around her have heard her make the basic confession of faith one might consider essential to being a Christian. That is, no one has heard her say, "Jesus is Lord," or "I believe in Jesus." As she approaches the close of her life she is experiencing compounded disability. In addition to the typical pains of old age (particularly of being in one's late nineties) she has had a broken arm, a broken hip and a broken leg, each separate instances over a two year period. Additionally, she woke one morning to find she was completely blind. Because of these disabilities, she is now experiencing the ignominy of limited freedom in a very controlled environment arranged by her care providers. My most recent memories of her include entering her room, with largely blank walls. Only the hospital type of curtains provide some semblance of privacy. Additionally, only the clothes on her back and a tin of peppermints reflect a life which until recently was filled with typical posessions. Interactions with her range from borderline hysteria and paranoia, "You are all trying to make me out to be crazy. No matter what I say, you will turn it around,", to clear, intelligent and engaging discussion, to crawling around on the floor of her room in search of her cane (which due to her disability she couldn't use should she find it).

In the midst of these interactions there are times when she lies on her bed and sobs saying, "God, why are you doing this to me? What have I done that was so wrong that you are doing this to me?"

The question that might be asked, is whether these pleas are a reasoned affirmation of faith? Also, what is a more reasoned affirmation of faith? That of the "reasoned" thinker who says the correct words, or that of the desparate person in their last days of life, calling out to "God," if only with questions. The question of which is the more reasoned is perhaps the wrong question. Perhaps it is better to ask what are indications of a real faith in God? I am glad I am able to leave it in his hands.

McNair (Happy 17th birthday Amy!)

The unfulfilled desire to serve

If people in my church have the desire to serve but no opportunities are available, then it is my fault, not theirs. This is too often the case for persons with cognitive disabilities. At times a service niche is found and they serve famously. In an earlier blog I mentioned the man who served communion for many years who worked as a pot scrubber professionally. I have known of people who have served in the nursery, or worked with children of the church. Another man was simply present in a resource room to help when he could, but to also keep an eye on the food and materials there to keep scavengers out.

In most of these cases, the terms of service were suddenly stopped. In the case of the potscrubber, there was a change over in the leadership and he was determined to be no longer mentally competent to provide the service (although he had for many years prior to the change over). In the case of the nursery worker, his goofy interactions with parents about what he thought Jesus' favorite color was, or some other fabrication he came up with caused him to be no longer able to rock babies to sleep in his perfect grandfather lap. Another person left due to the depression he was facing and has not been able to regain his status as an assistant with the children. Another was replaced with a person without disability.

In filling spots where service is needed in local churches, those who fill the spots and those who supervise the filling both have to be aware of the human resouces within a church and be more surgical, more judicious in filling those spots. I will use myself as an example.

I have been contacted on many occasions to serve in a variety of capacities within my church. These opportunities have ranged from drama, to movement, to ushering, to ministry leadership. With each of these opportunities I have to ask myself whether 1) this is the best use of my gifts and 2) are there others who might do this thing whose place I am taking. Now my assumption here is that I am looking for opportunities to serve, not simply providing the above as reasons not to serve. For example I have often turned down opportunities because I recognize that without my service to persons with disabilities at my church, the ministry might be limited and might not grow. So I turn down opportunities at drama and take up opportunities to work with persons with disability. I do that both because my gifts are in the area of disability ministry, and there are others who are able to fill the spots in the other ministries.

All that to say, that there are opportunities for ministry, say taking the offering for example, which persons with cognitive disabilities can do just as well as those without disability. Perhaps those spots should be reserved for individuals with disability. Can you imagine if a team of 8 people with down syndrome came forward to take the offering at a church! Pretty cool. Those individuals without disability who are engaged in service, like taking the offering, might stretch themselves to use more of their talents by perhaps assisting in a ministry like childrens' Sunday school, leading a Bible study, or some other form of ministry. This is not to disdain those who serve via the taking of offering, etc., however, in the economy of opportunities for service, the economy of people willing to serve, human resources must be used judiciously so that as many as possible can have the opportunity to serve. We also must be careful to keep people from "copping out" by only serving in an unchallenging manner.

Of course service is important independent of what it is. If it is really true that in churches 10% of the people do 90% of the work, then that is a symptom of a larger problem. The point here is not to dismiss myself from doing the menial service of a church. Rather it is to do the challenging service of the church and the menial service of the church, but to also look to others to do what they can, to do what is within their ability level in service as well.

The Bible talks about David and his desire to build the temple. God "credited" David for his desire to build the temple even though he didn't permit him to actually build it. Will people with cognitive disabilty only be "credited" by God for their desire to serve, or will we work to provide actual opportunities for them to serve. It may require our speaking up when an opportunity comes to us, saying "I am willing to do this, but have you considered a person with disability for this position? Why don't you ask one of them first, and then I will help if no one is available." It will also require our stretching ourselves to take on the more challenging aspects of service.

McNair

Some stories

Once a man who attended our group (we were in Pasadena, CA at the time) used to carry a briefcase to class each week. Among other things in the leatherette case was a baton which he used to lead singing each week. He used to take the public bus back and forth to church. One day after class, I went out with him to wait for the bus to arrive. I noticed that his briefcase had several large bulges in it, so just to make conversation I asked, "What do you have in your briefcase." He pulled out a jar of peanut butter and a can of corn and became somewhat indignant. "You wouldn't believe the people here. They just throw this stuff away!" he replied. "They have trash cans here and just throw it away!" Well, he had been pilfering the barrels (actually trash cans) that were used to collect canned goods for the poor. He qualified, so I told him to go ahead and take something he might see in the barrels in the future.

On another occasion, a woman with down syndrome who was about 55 was in our class. The teacher that day was teaching a session about the notion that God is eternal, a difficult concept for anyone to understand. After referring to the fact that "God is eternal" several times, the disabled woman finally turned to me and said "What is all this God is a turtle business?" I agreed with her that the lesson wasn't very relevant.

Then, we used to have a class member who enjoyed watching Christian television to the point where he learned various Christian phrases used in prayers on the station. Without fail, each week he would volunteer to pray. In a manner he had no doubt seen hundreds of times on tv, he came forward, carefully removed his glasses and struck an austere pose. He then went on to string together a series of random phrases which he had heard on the television. It would go something like this:
"O God and Father of the Lord Jesus Christ
for the forgiveness of our sins
the bounty of your righteousness
through the Holy Spirit
and the love of the Lord Jesus Christ
bring us together today
from the bounty of your righteousness
and the forgiveness of sin
etc. etc.
Amen."
Other class members were quite impressed.

Finally, another fellow was barely able to speak coherently. He would ask to pray and go forward. As he would pray, the class members in their honesty and desire to understand would be saying "What did he say?" as the prayer went on. So the scene was a man speaking unintelligibly with his eyes closed, while most of the others in the room were saying in loud voices, "What did he say?" I also wondered what he might be saying. He, however, was undaunted. Anyway, sometime later, we taught the class the Lord's Prayer. Imagine my surprise when as I taught the phrases of the prayer, the man with the unintelligible speech would repeat each different phrase in an unintelligible yet consistent manner each time. Actually he had been saying the Lord's Prayer every time he had volunteered to pray, but you might say he was speaking it in a different tongue (or language). A tongue unintelligible to me but not to the Lord.

McNair

Evil versus normal

Lets consider for a moment that mental retardation is a result of sin, in terms of being a result of the Fall (not parental sin, their own sin, etc.). I recognize that these are huge generalizations, however, what characteristics of persons with mental retardation would be those which would seem the result of "evil" and what would appear to "normal?" Then armed with this information, what is our responsibility?

These are the things about mental retardation which some might consider the result of the Fall, that is apart from what God might have intended for people.
Low intellect resulting in:
-inability to achieve at the same level as those not effected
-poor social skills due to an inability to interpret social behavior, social cues, the perception of others
-limited language ability resulting in limited abilities for speech, understanding, ability to read and in severe situations autism in its various forms.
Physical disabilities of a genetic variety:
-such as organ disorders
-bone and stature problems
-metabolic problems and their potentially devastating results
-potentially forms of cerebral palsy or seizure disorders
Also due to the societal construction of disability:
-effects on the family
-devaluation of the individual with disability
Others might also be imagined.

At the same time, these are things associated with mental retardation which seem antithetical to the Fall:
-viewing life as little children
-a simple yet often very strong faith
-a willingness to serve
-an ability to not see their own situation as abnormal
-the desire to be social and close to people
-acceptance of others irregardless of appearance or intellect
-freely loving of others without pretence or "walls"
-genuine honesty in expressing their feelings
Others might also be imagined here.

In viewing people either with an eye toward changing them or as an advocate, it is important to distinguish between what is normal versus what is evil. In change through education, we must also see the difference between characteristics of individuals and characteristics of groups. If the societal construction of mental retardation is changed, many of the perceived deficits of these persons will not be as relevant as they appear to be now. For example, concerns over quality of life will reflect the necessity to change environments in which persons with mental retardation move at least equally as often as the necessity of changing the persons themselves. Advocates will be less likely to entertain excuses.

I had a conversation with an interesting man the other day who is an expert on administration of faith based programs. He decried the problems of trying to include persons with disabilities in private Christian schools, for example, citing costs (largely) among other issues. To my mind this is an environment that needs to be changed. Christian schools have justified their lack of inclusion of persons with disabilities in their schools over the years on the basis of a lack of money. Although I recognize the pragmatics of the situation, somehow this argument rings hollow with me. Can you even imagine going before the Lord and saying, "Well, we would have served the disabled people if we had had more money." Would a proverbial response from God be, "Hey, no problem. It just wasn't a priority."

This type of exclusion is a direct reflection of who people with mental retardation are perceived to be, what the Church's responsibility toward them is perceived to be, and in the situation who is in need of changes.

McNair

Do severely cognitively disabled people sin?

During the 1970's there was a dramatic move across the US to close the institutions for persons with mental retardation. Fueled by photographs by Burton Blatt, and video by Geraldo Rivera, the nation became aroused and the clients were exited to smaller facilities. It was at that time (1978) that I worked for about a year at an intermediate care facility in Eastern Pennsylvania called Pine Hill. Pine Hill received many persons who had been residents of Pennhurst, one of the institutions with a deplorable reputation.

The question of sinfulness, or maybe just plain bad behavior, at least the potential for bad behavior became real to me at that place at that time.

I met the first person in my life who was self abusive, and wondered about her. Were the punches, I mean jarring punches, which she delivered to her own face wrong? I wanted her to stop, obviously, but was her behavior wrong or sin?

I remember a fellow who used to dig into his diaper and smear his feces on the wall every morning and I wondered whether that was bad behavior or evil. Judging by the feces in his hair, on his face, in his mouth, he sure seemed to be having a good time. One time he was flipping his hands in the manner that many persons with autism will, and feces flipped off his fingers and onto the staff member who was in charge of working with him (feeding, showering, etc.). I was surprised at the indignancy of the worker, assuming that the man deliberately threw the feces at him.

But the most poignant memory I have is of a woman with severe mental retardation who was being fed on her back because of the severity of her physical disability. On one occasion, while being fed on her back, she choked, sputtered and spit at her case worker, and was verbally punished, and nearly a month later was placed in "solitary" for a couple of days, also for the spitting behavior. To me, she had obviously not done anything wrong. But to her case worker she had been a bad girl, or perhaps a bad woman.

I want to occasionally touch on this issue, that is the intention of behaviors by persons with severe disability in an attempt to understand how behavioral intentionality in these individuals is often characterized, how it might be interpreted, and what implications we might draw about the spiritual condition of persons with severe disability.

More to come.

McNair

Responsibilities versus rights

In our current society, groups are clamoring for various rights. The disabled community is no different. Obviously some rights, such as the right to a public school education, should have been available much before 1979. However, as discussed in Phillip K. Howard's The Death of Common Sense, rights can get out of hand. My friend Dr. Rick Langer says that if you want to empower someone give them responsibilities not rights. As soon as I become dependent upon you everything changes. I will expect more of you, I will value you, I will actually need you to fulfill whatever it is that you are doing.

People with disabilities have long been in the position of being reliant upon those without disability to help them. It is those in the not-yet-disabled community who need a little dose of reality when it comes to dependence. I will admit that one of my biggest problems is recognizing my that my "strength" is an illusion in so many ways, particularly in relation to God. As DC Talk says, "the physical world creates a spiritual haze." It takes an effort on my part to see past myself to my utter dependence upon others.

I am also extremely dependent upon my wife Kathi, my children Josh and Amy, and so many others.

One looks upon someone with disability, particularly a severe physical disability and feels sorry for that person, at times because of their dependence upon others. I should look at such a person as I would look at a reflection in a mirror as that is who that person is. She is a physical example of a physical and spiritual reality. I do well to understand that reality.

But I also do well to empower such people by using their gifts within the church. One of the greatest things I can do as a Christian is to pray. People with severe physical disability, for example, have a tremendous opportunity to serve the church in this way (and others) if we will only value them, and also recognize our dependent situation that our strength is an illusion, and by example, our dependence on prayer.

McNair

Using "limited" gifts

"As he looked up, Jesus saw the rich putting their gifts into the temple treasury. He also saw a poor widow put in two very small copper coins. 'I tell you the truth,' he said, 'this poor widow has put in more than all the others. All these people gave their gifts out of their wealth; but she out of her poverty put in all she had to live on.'" (NIV)

The obvious analogy here is that persons on fixed incomes, like individuals with disability living on social security are similar to the widow who gave a small amount which was by comparison was a large amount. I have sat in church when persons with severe mental retardation put a dollar in the offering and saved fifty cents for a donut after church, recognizing that these were probably their two financial splurges for the week. You might say that this is less than the 10% tithe the church has adopted, however, it is the heart of these people which impresses me, not the amount of their gift.

But this verse struck me in another way as I read it this morning. "All these people gave their gifts out of their wealth" caused me to think of other gifts that people without disability have. Gifts like intellect, health, physical strength, social skill, community mobility, understanding of things of the Lord. We often hear that 90% of the work of a church is done by 10% of the people. I honestly think that I have yet to ask a person with a cognitive disability to do something for me and for them to refuse. They are quickly willing to spend their "limited resources" due to disability to do just about anything for the church, for others, whatever might be asked. They are certainly not limited in their desire to serve. Perhaps that is why persons with mental retardation are beginning to gain the reputation of being such good workers.

Through programs such as supported employment, employers are beginning to see that once the worker understands what she is to do, she will be reliable and dependable. As stated elsewhere they will treat an entry level job as a career. There is a movie I once saw about a woman with cerebral palsy and mild mental retardation. After years of training she was finally able to get a job as a ticket taker in a movie theater. Her comment upon receiving the job, and being able to hold it for several years was, "To you this might seem like a small thing but to me this is my life."

In Jesus' example of the widow, I think there are at least three take home lessons. One is to celebrate the gifts of those who aren't as gifted. The second is apply her example of sacrafice to ourselves in the way we use all that we have been given. The third is to provide opportunities for those who perhaps aren't as gifted to express their gifts. If your standard for participation is always and only excellence, then only a few will be able to participate. Imagine if the minimal standard for giving in Jesus' time had been a silver coin rather than any gift. The copper coins the widow sacraficed to give would never have been given and therefore never used. Her desire to give to God might have gone ignored. However, if your standard is meeting the desire to give or to serve then all can potentially be involved. If people with cognitive disabilities in my church have the desire to serve but no opportunities are available, then it is my fault, the church's fault not theirs.

McNair

Expectations of the rank and file

One of the things I have wondered about over the years, is what is the rank and file Christian's responsibility toward persons with disability in the church? There are people like myself who have chosen this area of ministry (or have been guided to this area of ministry) but what of people who have not taken this on as their focus of ministry?

A friend of mine has given his life to cross cultural missions particularly in foreign countries. He once said that if people were truly serious about their faith they would give themselves to this area of ministry. I responded that from my perspective if people were truly serious about their faith they would give themselves to ministry to persons with disability. Obviously we were both wrong. God calls each of us to different areas of ministry. Our role is to find that area and spend ourselves in that area.

However, the idea of the responsibility we each have in foreign missions might help to understand our roles in other areas of ministy. I am by no means the role model for service to the local church, but it helps me to consider what I might expect of others by thinking what God might expect of me, what others expect of me and what I expect of myself relative to ministries developed by the church.
1. I should recognize that the people involved in ministry have somehow experienced a call to that area of ministry. It is therefore a priority for them and I should respect them for responding to that area.
2. I should support their efforts through prayer, financial support as I am able, and perhaps even occasional service.
3. I should take the time to understand their mission, their goals and how I might support them in some way by what I do.

But I also think there is a larger question in disability ministry as the focus of the ministry is present at the church. People go somewhere to do foreign missions. People with disability are regular members within my midst, at my church. What are the rank and file's responsibilities toward these individuals in their midst? It is interesting how passionate people suddenly become about disability when disability visits their family. Obviously one cannot be passionate about everything, and of course I will take a greater interest in diabetes if my father has it, or in India if my daughter is serving in ministry there. But is there some middle ground of interest, support, service that I might engage in even if disability ministry is not the focus of my life?

I have been coming to a growing realization that when I set foot on my church's campus on Sunday mornings, that I am not there for me. Well I am there for me but it is all not about me. Of course there is the worship service which should focus on God, but there are also other interactions with people, and I am not the focus of those interactions. I guess when I buy my donut and coffee I focus on myself (I have become so predictable that the donut lady has my favorite one waiting for me each Sunday!). But when people talk to me, I try to listen. I try to make other's smile with my silliness. I try to teach people with disabilities about the Lord. I try to make others with severe cognitive disabilities feel welcome as they go through their personal church rituals (see May 22). I try to be accepting and encouraging. At times I will take someone out to lunch later in the week or give them a phone call.

I guess these are the kinds of things I should expect of regular church members. As a rule, at least at my church, they are doing a pretty good job.

McNair

People with disabilities need advocates

It's true. People with disabilities need advocates. I never cease to be amazed at the manner in which the agencies who purport to help persons with disabilities sometimes don't help to the the extent they are able, and at times actually can hurt.

I was recently at an individualized education plan (IEP) meeting for a young girl with down syndrome. By law, the education of persons receiving special education is to be individualized partially because these idividuals have demonstrated that have difficulty being successful under the regular curriculum and also because oftentimes very specialized approaches are necessary. Anyway, in this meeting diagnostic information was shared about the girl. The teacher indicated that the student only knew about 10 letters of the alphabet (although at the meeting she wasn't sure which those were) and could barely write her name. However, the objective for the IEP was that the student would remember to place spaces between words when she is copying a paragraph from the blackboard. OK, so the most important thing (among others which made their way into the education plan) was that a girl who didn't know letters would successfully place spaces between words in a copied paragraph. Does this strike you as somewhat silly? Even the parents, two intelligent people, didn't speak up about the objective at the meeting until I spoke up.

In a different situation, an adult woman with mental retardation in the mild to moderate range was living on her own in an apartment with about 3 cats. I know it was three, although my nose told me there had to have been more cats in that apartment. The landlord of the complex decided that pets would no longer be permitted in the complex. Tenants were given 2 monts to get rid of their pets. I recognize that this is difficult, however, that was the rule. The woman I knew insisted that she wouldn't get rid of her cats. When case workers from the state attempted to help her to even discuss the possibility, she became verbally abusive. At that point the case workers no longer attempted to work with the woman to get rid of her cats. This is an evil thing to me as they knew what the logical progression of things would be for that woman. Although she had lived for nearly 10 years on her own, she would be evicted from her apartment. Upon being evicted, she would loose her ability to receive reduced rent from the government. Without the ability to receive reduced rent, she would not be able to afford to live in an apartment. Unable to live in an apartment she would be forced to live in a group home for individuals with much more severe disabilities and much less freedom. In some convoluted kind of way, the woman would be receiving the natural consequences of her choices, even though I am confident she wasn't entirely aware either of her choices or the implications of her choices. The approach of the state agency set her up for failure, she failed (according to them) and as a result she was set back, probably at least 10 years in progressing to the level of independence she had been enjoying.

It takes getting to know persons with disabilities and the system to some extent, however, the church is littered with people like myself who have the knowledge and ability to be an advocate. This is a way in which the church can stand up for social justice for a disenfranchised and disadvantaged group of people. Christian social service workers and teachers, does your service end with your exit from your office or school, or can you work to advocate for those who aren't your clients after hours and at other times, even if it means taking on your own state agency?

McNair

Overcoming a notorious reputation: Roy and me part 2

Well, once again I met Roy and we went off to his 4th grade Sunday School class. His parents were concerned because he had eaten some sweets that morning, which appear to be a trigger for inappropriate behavior. I was happy that he was either resigned to or pleased about the fact that his big, balding, bearded, buddy would be again following him to Sunday school. We walked in, and the sign in sheet wasn't there. Small things such as this can at times be the trigger for children with autism to engage in behavioral problems. Roy took it in stride and went to sit down in his usual spot. I went and sat by him. A young girl with down syndrome sat nearby with her adult woman buddy in tow.

The teacher entered the room and said "There will be lots of chances to win candy today!" I immediately realized that I didn't fulfil my pledge on this blog (see May 17) to have something else available. I got up and scurried around looking for chips or something that Roy could win. Finally I spoke to someone in charge and she came up with the idea of shiny new pencils that they had. I sat down. The sign in sheet arrived and he got up and signed us both in.

We sang some songs, some of which Roy knew, to the point of being willing to go forward and "lead" the songs with other kids. When he would do particular motions to the songs, I did them as well. He began to look to me to mimic his motions. At one point I asked him if he could read the words which were being projected and he said "No." However, he then picked up a flyer about some trip and proceeded to pick out words he knew. He saw the word "ball" in balloon and was pleased to know the whole word. He also loved the phrase "baby wipes" which he read repeatedly to himself with delight.

The leader asked questions and the kids were to jump up, provide the answer and receive a candy. I don't recall the question, but on one of them, Roy was the first one up. He also answered the question correctly! The teacher approached him with the pencils, but he indicated that he wanted a candy. The teacher's assistant came forward and gave him a small candy bar. He took it and put it by a pin wheel he had been carrying. The session continued on and occasionally kids would go forward and exchange their candy for something more desirable. Noticing this, Roy went forward and traded his candy bar for a taffy apple sucker (good trade!). He brought it back and once again set it down. My mind kept telling me that he has problems if he eats sweets, but he hadn't actually eaten the sucker. Finally, the class ended and students were able to chose another candy. Roy went forward and chose a tootsie pop (another good choice) and put it in his pocket with the other sucker. I looked at him somewhat surprised. I guess he could read my mind as he commented, "I am going to a birthday party today and these are for my friend."

As I left him off with his parents I told them about the suckers he had in his pocket half because I wanted them to know he had them so he wouldn't eat them, but more so they could recognize how thoughtful he was to think of someone else in the midst of a situation where I guarantee you the other children (me too for that matter if I had been allowed to stand and win a candy) were thinking of their desire for candy, of themselves.

More to come.

McNair

Is learning disability the result of sin?

I want to return to Matthew Phelps article in the Spring 2004 issue of the Christian Scholar's Review. As I reported, last blog, he states,
"More extreme deficits due to diseases or disorders, such as Alzheimer's disease, a hippocampal injury, attention-deficit disorder, or learning disabilities are a result of the Fall according to my view. They are not part of the way things are supposed to be."

The notion of a detectable disability being a part of the fall raises some interesting issues. The history of intelligence testing reveals that prior to the early 1900's learning disabilities were not even recognized. I suspect that people always experienced difficulty with learning, however, the recognition of low IQ did not even occur till about a hundred years ago, with the actual label of "learning disability" being coined by Dr. Samuel Kirk many years later (I had the opportunity to meet Dr. Kirk before his death. He was a interesting insightful man). This recognition also related to the urbanization of society, particularly in America.

In a previous post I noted the fact that an individual with mental retardation who is a friend of mine is not sure whether or not he has a disability (see May 18th) although I see him as disabled. I made the point that that is a problem both for me and for the Church. Seeing someone in a particular way implies a form of stereotyping and the accompanying baggage that goes along with that perception. As much as I might want to be egalitarian, there is a difference in my relationships with persons with cognitive disability and those without. We talk about the same things, often do the same things, but there is still a difference which although it accompanies my perception of disability is not necessarily related to my friends' disabilities.

So, going back to intelligence testing, a point came where a group of people who weren't disabled suddenly were, on the basis of a test of their intelligence. We also find that many of these people really weren't disabled, but were being tested in a language other than their primary language, or using cultural language, metaphor and history with which they were unfamiliar. It seems in these cases, the result of the Fall was the development of the tests not the disability of the persons.

This brings me to my point. If I look at something, and I perceive it as evil or as a result of the Fall or the result of evil, it colors my perception of the reality of that thing I am observing as well as the manner in which I will categorize, describe, interact, etc. with that thing. If disability is often a societal construct (see May 18th again) and not necessarily a negative characteristic of an individual I need to re-evaluate the societal construct, not the individual. A couple of examples.

In Steinbeck's Of Mice and Men, Lenny is a large man with cognitive disability (mental retardation). I particularly loved the movie adaptation of the book (the most recent one) as it displayed Lenny's competence as a worker. When others were struggling to haul bags of grain, he could take two at a time and toss them easily into the wagon. From the employer's perspective who was the better worker? Knowing many workers with mental retardation, I would also add that these individuals rarely complain about their wages, and treat their entry level job as a career.

Then, there was a research study done about social skills and workers with mental retardation. You see the literature indicates that most persons with mental retardation loose their jobs due to minor social skill deficits. The researchers in the Chicago area went to a jobsite where a man with mental retardation was working. They asked the boss and coworkers, "If you could change anything about Joe, what would it be?" They replied that he repeated topics too much at break and other times during the day. Can you even imagine your boss calling you in and saying, "Sorry, we have to let you go because you repeat topics too much." Yet, that can be the criteria to fire workers with disabilities. Anyway, imagine Joe talking about the Cubs or something "too much." Well the researchers measured the amount of times the coworkers repeated topics and used that level as the criterion by which they would measure success for Joe. By the end of the study, Joe was talking about the Cubs no more or no less than the other workers. When the researchers went back and asked the employer and coworkers about how Joe was doing, they replied there was no difference.

Perception is everything. One must first determine where the problem is before one can formulate an intervention to address the problem. Are learning disabilities or mental retardation a result of the Fall? I am not entirely sure. I am less sure than Matthew Phelps about what should be included in the range of normal because I know too many "disabled" people who seem to get more normal the better I know them. However, I am sure that the manner in which persons with learning disabilities, mental retardation or other disabilities are treated by society, including the church, is most definately a result of the Fall.

McNair

Pre-Fall normal vs. post-Fall normal

In the Spring 2004 issue of the Christian Scholar's Review, Matthew Phelps takes on the notion of memory as it relates to a high or low view of human beings. He states,
"Nevertheless, even if one grants that cognitive limitations are not best characterized as sins, or as moral evil, they still need to be distinguished from general effects of the Fall; that is, from natural evil. Let me first note that my claim that memory limitations are good applies only to those limitations within the normal range of variability in human capacities. More extreme deficits due to diseases or disorders, such as Alzheimer's disease, a hippocampal injury, attention-deficit disorder, or learning disabilities are a result of the Fall according to my view. They are not part of the way things are supposed to be."

In this discussion Phelps is once again largely speaking of variations in memory functions as the limitations or ranges of human functioning. He goes on to say,
"On the other hand, I view normal limitations as part of the way things are supposed to be, rather than as Fall-induced perversions of the mind. If cognitive limitations are not sins, and if they are an original aspect of the created order, then they are more than merely not evil; they are in fact good. They are good because they were created by a good God. They are good because human beings are supposed to be limited."

This immediately begs two questions in my mind. First, what is the range of normal variation. You might counter, "What difference does it make?" I just wonder what level of cognitive functioning, in terms of deficit might be considered within the normal range, and what level is a result of the fall? What range is a part of the created "good." What range is the result of the Fall. Unfortunately we have only two examples of pre-Fall humans. We note variations in sex, and perhaps others one might glean from the Genesis account, however, other aspects of human variation not due to the Fall are hidden if only because of the number of pre-Fall people.

A second question relates to ranges of normal functioning that Jesus as fully man would have experienced. Isaiah 53:2 makes the following prediction about Jesus' coming. "He has no form nor magnificance that we should see him; nor form that we should desire him." This implies that not only was Jesus within the normal range of human appearance, he was in the middle to lower range. He experienced the range of normal in appearance. When you read about the level of beating he sustained, and the way he was able to survive to the cross, it gives the impression he had physical strength perhaps in the higher range of normal in being able to survive physical abuse. His teaching, words, and cleverness in interacting with his detractors give the impression that he was in the high range in terms of intelligence (let alone wisdom). Physiologically and mentally he had a strength in the high range to be able to fast as he did.

Mental retardation is defined as "subaverage general intellectual functioning with accompanying deficits in adaptive behavior." Low IQ typically means 2 standard deviations below the mean. Deficits in adaptive behavior are relatively standard, although for example, some children walk at 1 year and some at 2 years.

So, I wonder what the Fall did to change the criteria of what is normal/good functioning.

McNair