Lesson from Wilberforce

I have been reading some brief booklets on famous people. These are put out by The Trinity Forum. The first one I read was entitled, William Wilberforce: A man who changed his times by John Pollock. In the Foreward, J. Douglas Holladay reflects on Wilberforce's life, and develops a summary of the "seven principles that illuminate what it means to live a life of significance today." He states,

Wilberforce's whole life was animated by a deeply held, personal faith in Jesus Christ...
Wilberforce had a deep sense of calling that grew into the conviction that he was to exercise his spiritual purpose in the realm of his secular responsibilities...
Wilberforce was committed to the strategic importance of a band of like-minded friends devoted to working together in chosen ventures...
Wilberforce believed deeply in the power of ideas and moral beliefs to change culture through a campaign of sustained public persuasion...
Wilberforce was willing to pay a steep cost for his corageous public stands and was remarkably persistent in pursuing his life task...
Wilberforce's labors and faith were grounded in a genuine humanity rather than a blind fanaticism...
Wilberforce forged strategic partnerships for the common good irrespective of differences over methods, ideology or religious beliefs...

Wow, if we could only live a life as significant as Wilberforce. His issue was largely stopping the slave trade. Our issue disability and the church.

The one principle that really jumped out at me, however, was the one which states, "Wilberforce had a deep sense of calling that grew into the conviction that he was to exercise his spiritual purpose in the realm of his secular responsibilities." How does one excercise spiritual purpose in the realm of secular responsibilities? Wilberforce was a politician so he used his political platform to unabashedly champion against the slave trade, informed by his Christian principles. I am a special education teacher, or a rehabilitation counselor, or a parent who works in the business world, or a pastor or Sunday school teacher. Do I see my secular calling as an opportunity to exercise a spiritual purpose? Note, I am not necessarily talking about sharing the "four spiritual laws" every day during lunch. Rather I am talking about expressing the need for people religous or not to care about their brothers and sisters who experience a disability. I am particularly calling on those who have a secular responsibility based upon their training, or experience, or knowledge to express that secular responsibility in the climate of a spiritual purpose.

I have often spoken to secular groups of special education teachers, or caseworkers, and asked, "When was the last time you did something for someone who couldn't do something back for you?" Something, that is, for which you weren't paid to do. You see, I think that like pastors, we confuse the things we are paid to do with the things we are not paid to do. Yes as the Wilberforce statement makes clear we are to work toward a spiritual purpose through our vocation, however, we should not allow our vocation to be the only place where we use the training we express in secular responsibilities to be evidenced. The world is desperate, I believe, for people who care for their neighbor, just because they care for their neighbor. They don't care because they are paid to care.

Churches are desperate for Christian professionals to express their secular responsibilities in both the secular world and the religous world, the public square and the church. In both places, spiritual purposes need to be achieved.

What if we could soften the church and soften the secular world toward individuals experiencing disability?

McNair

Doing God's work alone

This past Sunday, a group of us went to see a showing of "The Nativity Story." I was impressed by the movie, and really enjoyed it. One thing that hit me that I really hadn't thought about before, was how alone Mary and Joseph were in their knowledge about the Christ child that she was carrying. To the degree that others did know that she was pregnant, their responses would be largely negative. Ultimately when they left for Bethlehem, the were once again alone with the knowledge of what was happening to them, to the world. Obviously they had both been visited by an angel, but as far as human support, human encouragement, only Elizabeth was in any way encouraging to Mary, understanding to some degree what was happening to her. Nevertheless, on they went to Bethlehem, alone, responding in obedience to the direction of the Lord. Ultimately, they received affirmation in the form of the Wise Men's visit from the human world.

I was encouraged in regards to working with people with disabilities from that interpretation of what was shown in the movie. Often we work alone, with little encouragement or understanding. Yet we are responding to the call of God. In the same way that Mary and Joseph finally received affirmation from the
Wise Men, from people, but they relied on the Lord for their affirmation their encouragement. We must learn to do the same. Ultimately we will receive affirmation for our work, often alone as we are being obedient to God. But we must learn that in spite of what people do or do not do to affirm or encourage us, we must continue our work knowing we are doing the will of God.

McNair

Second class ministers

Those of you who read this blog, know that I have at times spoken of the need for a movement of lay professionals to change the church. That is, professionals in special education, rehabilitation, social workers and others to step up and call for the development of disability ministry in their own local church.

Recently Kathi and I were doing an inservice for a local Christian school about why Christian schools should want special education generally (a future blog entry) and specifically how to do curricular modifications at the Christian school to allow students with various needs to be successful in the general education program. In the process of delivering the inservice, I got talking about the priorities that churches place, that pastors and leaders place on ministry to persons with disabilities.

It occured to me that one of the reasons that professionals in areas of disability have not stepped up is that over the years, they have been made to feel that their work, particularly as it relates to the church is not very important. People will often say how wonderful it is to work with persons with disabilities, talking about how much patience it takes, however, they don't make the connection to applying those skills to the Christian church. I think that because there is little mention and little priority on ministry in the church, professionals may feel like second class ministers if they are involved in such ministries.

Churches see ministry to chldren or high schoolers or developing small groups for adults as very important. Disability ministry is less important in their eyes. So my desire to do such ministry is less important. I would be willing to bet money that at least one professional in disability attends every church in the United States. However, there is not at least one disability ministry in every church in the United States. Why might that be?

It could be that there is a disconnect in the minds of disability professionals between their work and potential ministry. I am sure that is often the case. However, I am equally as sure that pastors are not calling those professionals to use their gifts and their training in such ministry. There are people out there like me who arriving at a church with a Ph.D. and years of experience in disability ministry were told, "Its not a priority at this time." That is one way of telling someone that your ministry desires are second class. Another way is to have a highly trained person in your midst and see her expertise as irrevalent to the work of the church. Its like, "Its nice that you paint pictures" or "Its nice that you play basketball" or "Its nice that you have a BA, MA, PhD, or whatever in working with people who have been ignored by the church for hundreds of years." Its nice but it is irrelevant, in their minds.

That is why when Kathi and I were told that disability ministry was not a priority, I turned to her as we left the pastor's office and said, "It soon will be." We began to bring people with disabilities to church, sought them out in the community, and the ministry has become more of a priority. I think people think it is nice, but often don't know what to do with us. I wonder what would happen to the ministry at our church if we suddenly disappeared from the scene. It is getting better as regular members begin to open themselves to those with disabilities and begin to like the changes those people make in them. They find out the big secret that we in disability ministry already know...Its fun and people with cognitive disabilities (our particular focus) are really great people.

So you lay professionals out there, don't allow your church or its leadership to make you think that disability ministry and disability ministers (potentially you!) are second class ministries or second class ministers. If we believe that all people are of equal value in the sight of God, our churches should reflect that fact. Our ministry priorities should reflect that fact.

And to you pastors who might be reading this, you need to confront disability professionals with their responsibilities in the church. You need to bring people with disability into the Church and support the efforts of those who do the same. Did Christ see people with disability? Very often these people are also poor. Did Christ have any interest in the poor? We read the stories of the extent to which Jesus went to minister without considering the context or the effort on his part to get with these people. Jesus’ interactions with persons with disabilities are breath-taking, and they were intentional on his part. We trivialize these interactions when we use them simply as illustrations of spiritual principles. These were real people confronted by a real God, and these confrontations with real people by a real God are ubiquitous in the New Testament. So don’t miss the priority Christ gives to these people as an example for you as a church leader in terms of the priority you should give to these same individuals who are living in your midst today. If you say that people with disabilities are not a priority, you devalue people, you indict yourself and you diminish the service of those who do work with the disenfranchised and people experiencing disability.

McNair

Mental Illness in the Church

Here is the slightly edited text of an email I sent to some folks who are attempting to integrate a person with mental illness into their church group. I provide it as several of the ideas might be worth chewing on.

You guys have sure been giving your best in trying to integrate --- into the group activities. I really appreciate your efforts on her behalf.

In the midst of the difficulties, I hope you are debriefing with the rest of the group so that they can understand your heart in this matter and why you and the others have gone to the extent you have to try to make integration work. Perhaps the group may themselves come up with something that would work to include her to some degree. Ultimately, I think we must have a place for people like --- in the church. As people evidence more disturbed behavior, however, those places will become more circumscribed.

Should you decide to offer her a more circumscribed place, please try to come up with a place where she can regularly be with her age peers. Perhaps she will not participate in all activities, however, I would recommend that there should be some place where she might be able to participate. Communicate to the group that a major part of the goal of that group might then be to act kindly toward her and people like her, attempt to overlook her negative or disturbed behavior and love her. It will not be easy, but it would be a stretching activity for those who would attend that particular meeting. I suspect the leadership themselves might feel less stressed about the situation as they are not attempting to offer the typical meeting or Bible study. They are offering a setting where Christian people are trying to reach out to a person who atypical, difficult to be with and possibly mentally ill. Because the rules for that sort of a meeting change, those involved in the meeting will also change their expectations. We will guage our successes or failures differently. We will be looking at how a particular group member grows in her ability to interact or accept a person who is difficult. We will look at how people are becoming tougher in their ability to show love to difficult people. It would be understood that we are here in large part, to include a person who is difficult to be with and who will evidence difficult behaviors. It is a ministry. I taught kids with serious emotional disturbance for a while, and I know myself that if I am prepared to go into a situation with a person with emotional disturbance, for example, I am much more able tolerate various behaviors as I recognize that it is the disability that is being evidenced. I recognize that in this situation, I am doing my best to love this person in spite of his difficulties. Obviously not everyone would choose to participate in this particular activity/class/or whatever. However, you might find many who would be willing to step up.

I recognize your significant efforts to integrate --- and truly do appreciate them.

I honestly do believe there is a place in the church, or at least should be, for everyone who would want to attend, even if they are mentally or emotionally disturbed. To create those places, however, causes me to see my involvement in the church differently. So I don't always go to a Bible study group just to study the Bible myself, I sometimes go to be a part of a place where people with mental illness can go. I help to create a space where a person evidencing difficult behaviors can come and study the Bible. I recognize that I am in ministry by creating that space. I may not be leading the study, or even participating to a great degree, however, my being present, being accepting, not being so fragile or brittle, I am in ministry because I have created a place of acceptance for people who are largely deemed unacceptable. I fight the urge to just kick the difficult person out, out of obedience to God. God wants to love the difficult person WHETHER OR NOT THEY GET BETTER and he wants to do it through his church, through me. It causes me to see my involvement in church differently. As Rick Warren says, "Its not about you." It truly is not about me as the focus. It is about me as the servant.

McNair

Social looseness

Have you ever been to a dinner with a person to whom table etiquette is extremely important? Now I am not talking about wiping your mouth on the table cloth, or grabbing food off of your neighbor's plate, or spitting or swearing. I am talking about the fine points of where the fork needs to lie, or how to hold your glass while you are drinking, or how you cut your piece of meat. I get really impatient with people in such situations. I think they are focussing on things which comparatively aren't really important, particularly when the points of etiquette are used to judge. I find I would rather not eat than have to eat with people who are constantly judging me on my table manners (which aren't that bad, I don't think).

I think some people with cognitive disabilities must feel that way about their church or other community group experiences for that matter. They are constantly being judged on their social skills (which are often not quite there because they do not understand the subtleties of many social interactions). I must say that the more I am with such people with cogntive disabilities, the less their their lack of understanding of social structures bothers me. Now I am not talking about moral rigor. We should as a church and as individuals hold the line on issues of morality because that is a point of obedience to God. However, the social creations to which we have been socialized need more looseness. Particularly in the church, our social structures should be loosened in the name of acceptance. The environment needs to be softened because out of love and acceptance, your presence is more important to us than a particular socially derived pattern of social behavior.

Why do I say this? Solely because such social structures are used as a point of exclusion.

A person talks out in a group too much so he can't be a part of the group (obviously we should be quiet when in groups)
Someone misunderstands the level of familiarity he should display, so he is excluded (obviously I should not stand too close to people)
I am more open/less guarded with my verbal expressions so I should be excluded (I shouldn't express that I love you or that I am angry with you because we just don't do that sort of thing)
I cannot understand your subtle expressions of rejection so I should be excluded (you try to avoid me, and I just don't get it)
I talk to you about my work and you just aren't interested so I should be excluded(you try to move away and I follow you)
I repeat my comments about things which are really interesting to me and you get tired of them so I should be excluded (you tell me I have already talked about those things)
My nose runs and I don't wipe it so I should be excluded (you are tired of handing me tissues)
I need assistance with many of the things which are a part of being in a group so I should be excluded (I just take up too much of your time when you want to also be with others)

All of these are like the person at the dinner table judging my eating while I am doing my best, just trying to be a member of the group eating at the table. I want to be there because I want to be a part of a group, I want to be loved, I want to love you. You turn me away because I don't hold my fork right, or lay my knife on my plate in the right way.

I am reminded again of the verse in Romans 12:2 which says, "Do not be conformed any longer to the pattern of this world but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is - his good, pleasing and perfect will" (NIV). We should not reject needy people, particularly on the basis of what is tantamount to table manners. Could it possibly be God's good, pleasing and perfect will to reject people on the basis of their social skills, their table manners? NO. Could it possibly be God's good, pleasing and perfect will to become a bit more socially loose, and overlook the social skills of others in the name of love and acceptance of those who truly need love and acceptance? ABSOLUTELY. I need to once again reject the patterns of this world and once again be transformed by the renewing of my mind.

McNair
(fcbu)

Obliviousity

Obliviousity (n) the state of being oblivious, as in being focussed on one's self, and unaware of others around (The obliviousity of the Christian church is disconcerting). Obliviousity ranges from the person who in the checkout line with 37 items while the person behind him has 1 item and doesn't offer to allow the 1 item person to move ahead in line, to the person who blocks you from the right hand turn lane because he has positioned his car in the middle of the lane, to the person who reads his book in the only bathroom while others are waiting, to the person who is totally unaware of the challenges of those around him, be they challenges of disability, or any other challenge of life. Obliviousity may be deliberate "Those people are not a priority," to being characterized by the statement, "I just didn't know" when any human concern is raised having to do with anyone besides the person who is oblivious.

In an attempt to address the problem of obliviousity in this country, people have begun wearing ribbons, or placing facsimilies of ribbons on their cars. So we see breast cancer awareness, or aids awareness, or most recently autism awareness or down syndrome awareness. These banners may have the effect of raising the awareness of those who display them, but they only make those who see them wonder what the new color ribbon is about. The displaying of the ribbon, also may make those who display it feel they are actually doing something. However, there is a difference between "awareness," being aware of something and what may be called "doness" (pronounced do-ness) that is actually doing something. As the singer Bob Bennett says in one of his songs, we "mistake the sympathy we bring for the doing of the thing."

Somehow we must break through obliviousity and help move people to awareness but then also move them to doness.

Obliviousity is quickly cured when someone has something happen to himself. So suddenly I have an interest in persons with disabilities when a person with disability is born into my family. I then quickly see how oblivous others are to the needs of persons with disabilities. But even if disability visits my family, I may remain oblivious to the needs of other families facing similar issues.

Somehow the church needs to break through this barrier. Churches are beginning to reach the awareness phase. I pray the doness phase will come soon.

McNair

Friendship House

The Friendship Ministries newsletter had an article about what is being called "Friendship House." The following is an excerpt from the article.

When a ceremonial shovelful of dirt was dug from the site of Friendship House on September 12, ground was broken in more ways than one. The Western Theological Seminary (Holland, MI) project, named in honor of Friendship Ministries, is an innovative new Christian living community that provides inclusive housing for seminary students and adults with cognitive impairments.

Eighteen seminary students and six adults with cognitive impairments will live together...An essential contribution to this environment will be a weekly Friendship Bible Study group which will meet in the house. (Winter, 2006-2007)

This is amazing! Think of the sensitivity these seminary students will have toward persons with cognitive disabilities as a result of participation in this program. We need to be watching this development. What a great idea. God bless Bob and Deb Sterken and their son Rob for their innovative idea, and hard work to make this happen.

McNair

You decide who I am

A student of mine at Cal Baptist, Melinda, stopped by tonight during office hours. We had an interesting discussion about issues related to the class, but in the midst of talking she made a very interesting point. Basically people are who they are perceived to be. So, you approach a young woman and just see her as an attractive woman. I approach the same woman and see her as my daughter. You project a person who is attractive, but strange to you. I project a person who is as important to me as just about anyone else in my life. She is an attractive stranger to you. She is my daughter to me.

A man approaches you who has down syndrome. Perhaps he is not even much of a person to you, or someone who has a poor quality of life, or someone even to be feared. To me he is Ryan, my friend. I am aware of his disability in the same manner he is aware of my height (I'm 6'7"). His down syndrome doesn't add or detract from our friendship and neither does my height.

People become what they are projected to be by their environment. Melinda told me of a group of students she knew who were put in a program basically for trouble makers. Those around them then perceived them as such, as did they of themselves. They now saw themselves as trouble makers and lived up to the part.

I am reminded of the story (might be apocryphal) about the teachers who were given their students locker numbers and told the numbers were the students IQ scores. Students then proceeded to achieve on the basis of their locker number.

If I invite people with disabilties into my church, their perception of themselves will change. They will see themselves as worthy of friendship, wanted, valued. As a church member I also will learn to see them as worthy of friendship, as wanted and as valued. Exclusion, or absence of those people projects the image of unimportance, irrelevance, other, among other things. No wonder parents of children attending Christian schools will fight children with disabilties being in their Christian school. What have they learned to project on people with disabilities? How has the Church taught them to percieve persons with disabilities?

It goes to comments I made in an earlier entry to this blog. Others can be a detriment or a value added. It has more to do with me, with my perceptions, with my projections than it has to to with anothers characteristics. I know people who love particular people with specific characteristics and others who dislike those same people. What is different? The object of the perceptions is the same. What those making the perceptions of other bring to the interaction is what is different. That is why it is so important to change churches, to make them more open. As we do that, perceptions will change so that the same man who was once ostracised is now accepted because the environment changed.

McNair
(fcbu)

God owns disability

At the Joni and Friends "Through the roof summit" recently in Pasadena, Joni Eareckson-Tada made a comment something to the effect at the moment, "Satan owns disability." Make no mistake, Joni was reflecting the perceptions of many regarding people how people with disabilities are perceived, and the ramification of those perceptions. My understanding of the context of her statement is that disability is often accompanied by such things as fear, depression, despair, anger, frustration, family break-up, hopelessness, loneliness. In the face of these experiences all too often a part of being a person experiencing disability, the Church is largely silent, not very interested, unwilling, ignorant. Together, the result is that Satan has a foothood in disbility. People are depressed and frustrated and we are ignorant. People are scared or ignorant, and we have nothing to tell them from our experience. People are angry and despairing, and we are not very interested and unwilling to do anything that will change our patterns of operation, or cause us any discomfort or change in our schedule. The more I think about it, the more I agree with her.

Her response, however, was to say that it is time for the Church to take back disability. To encourage the depressed and despairing, to be there for them in friendship and support. To empathize with the angry and frustrated, and love them unconditionally. To prove to them that we will not reject them. To end hopelessness by providing hope, not just for eternal life but for life. To fight despair with friendship. Jesus was crystal clear on who he felt should own disability. We, however, give territory that Christ died for over to the enemy without a fight. As stated elsewhere in this blog, we are complicit in Satan's ownership of disability.

But it shouldn't be that way. The God I serve tells me that my life is equally important to anyone elses, independent of their conditions, their abilities, their physical characteristics. To not understand that, is to not understand one of the most basic of all precepts of the Christian faith.

Satan owns disability...but not for long! C'mon Church we have to fight our ignorance, we have to fight our apathy, we have to fight our silence. Through our fighting, we wrench disability out of the enemy's hands and return it to the Hands of the Lord, to the hands of the Church. "That the Glory of God may be seen, we must work the works of Him who sent me" (John 9). The alternatives are enemy ownership or God's Glory. Amazingly we have the ability to make one of the two a reality.

How beatifully will God's Glory be seen, when we finally work the works.

(note: I had to change the title of this blog entry. God is in control.)

McNair
(fcbu)

Church of England supports killing the innocent as long as it is "with manifest reluctance"

The headline states,

Outrage as Church backs calls for severely disabled babies to be killed at birth

The article begins...

The Church of England has broken with tradition dogma by calling for doctors to be allowed to let sick newborn babies die.

Some other quotes from the article...

And the Bishop of Southwark, Tom Butler, who is the vice chair of the Church of England's Mission and Public Affairs Council, has also argued that the high financial cost of keeping desperately ill babies alive should be a factor in life or death decisions.

Morality is a financial decision.

In the Church of England's contribution to the inquiry, Bishop Butler wrote: "It may in some circumstances be right to choose to withold or withdraw treatment, knowing it will possibly, probably, or even certainly result in death."
The church stressed that it was not saying some lives were not worth living, but said there were "strong proportionate reasons" for "overriding the presupposition that life should be maintained".
The bishop's submission continued: "There may be occasions where, for a Christian, compassion will override the 'rule' that life should inevitably be preserved.

So now we are advocating taking the lives of babies who were able to survive prenatal diagnosis and abortion out of Christian compassion. But we are not saying that their lives are not worth living. This only condemns us further as we are taking lives that are worth living. Why would we as Christians even want to enter into an argument as to whether or not lives are worth protecting, are worth living? We are not going to convince the detractors, and entering into the argument only justifies the argument on some level.

The church said it would support the potentially fatal withdrawal of treatment only if all alternatives had been considered, "so that the possibly lethal act would only be performed with manifest reluctance."

So as my life is being taken, I can smile knowing that those who are killing me are doing so with "manifest reluctance." You see they really don't want to kill me, but their Christian compassion informs them that they are forced to do so, ostensibly because the Spirit of the Lord is whispering in their ear, "Kill the baby. Kill the baby."

The submission says: "The principle of humility asks that members of the medical profession restrain themselves from claiming greater powers to heal than they can deliver.

So saving lives or attempting to do so shows a lack of humility. Using their argument, it is prideful, therefore it is sin to attempt to save the life of a disabled newborn.

There are those in the United States who aspire to be Europe in so many ways, not the least of which is the post-Christian culture there. Now the remnants of the Church are making determinations on the quality of life of disabled newborns. To whom do they think they are appealing with such pronouncements? Will people now begin coming back to the Church of England because of its stand on euthanasia? "I go to that Christian church because they kill the disabled babies!" "That's the kind of Lord that I want to serve!"

We have a choice to make as Christians about people who are experiencing disabilities. To date, we haven't been the greatest advocates for them, for their lives, for their inclusion in fellowship with us. Will we follow the Church of England and take the final step of preventing their lives? Killing disabled newborns is only the tip of the iceberg, and would most definately place us on the proverbial slippery slope. Will the church now come out in favor of physician assisted suicide? After all, it is expensive to support people who experience depression, and wouldn't Christian compassion call for the taking of the lives of the depressed as long as we evidence manifest reluctance. "Manifest reluctance." What a morally sinister phrase that is.

Who will be left to protect the fragile, the devalued, the vulnerable if not the Church of Jesus Christ? Once the Church of Jesus Christ goes over to the side of death, death will come unrestrained to any and all. It will justifiably come to us. Christians themselves will be the target of death. It is not like Christians have not been the target of death in the past. We play into the hands of our adversary, the evil one, when we become what Dr. Wolf Wolfensberger refers to as "deathmakers." Particularly when we kill the innocent, and claim we are killing reluctantly out of Christian compassion.

This is desperately evil and a horrible disgrace.

McNair

An example of a servant

I received word last night that a woman who had been attending our group died suddenly. She was a person who used a wheel chair, and had been surviving breast cancer although it seemed her condition suddenly worsened. I remember the day that a friend of mine, a man who experiences a cognitive disability decided to move in with her and out of town. They made the decision with guidance from a community supports agency, although I felt the agency handled the situation very poorly (facilitating his move away from his entire support network which continues to be a problem for him as he has to take the bus about 1 1/2 hours each way to get to church). He and I used to have coffee together once a week and enjoyed a friendship which was made more difficult when he moved. Of course there were the questions of the two of them living together from a Christian standpoint as well, which I also felt the agency stepped all over through their recommendations. The whole situation could have handled much better, which I communicated to the agency. My hope is that with her passing, my friend will be moving back into town again so we can enjoy coffee together again.

However, if it hadn't been for my friend and his selfless service to his girlfriend, I don't know what her life would have been like. When he first met her, she was living in a group home, only because she lacked the ability to take care of her basic needs. The physical nature of her disability constrained her. By my friend coming along side of her, her world was opened. She could now have an apartment with significant independence in the community. She had someone who could help her to move about the community, pushing her wheelchair from place to place. Her significant hygienic needs were handled well. I cannot remember my friend ever offering so much as a complaint although he had to get up most nights to change her when she soiled herself in bed, or wet the bed. He would transfer her to the bathroom, clean her up, clean up the bed and then go back to sleep. What dedication! What love for her! In many ways, he literally sacrificed himself in service to her with the result being a much more normalized life for her.

Towards the end of her life, she became impatient with those around her, no doubt because of the discomfort and pain she was feeling. I would at times get upset with her, I must admit. He, however, was nearly always friendly, always compassionate, always caring. Like any other relationship, they would at times get upset with each other, but the kindness and compassion always shined through the clouds.

I am unsure that he realizes all he did for his friend. But I plan to make sure that I express to him for her, the tremendous difference he made in her life. He was an example to me of what a servant is. I pray I will be as caring and compassionate with the people in my life as he was to his friend.

McNair
(fcbu)

New wineskins/church structures

I was thinking about the whole new structures for the church in terms of a verse out of the book of Mark. Specifically Mark 2: 21-22 which says,

No one sews a patch of unshrunk cloth on an old garment. If he does, the new piece will pull away from the old, making the tear worse. and no one pours new wine into old wineskins. If he does, the wine will burst the skins, and both the wine and the wineskins will be ruined. No, he pours new wine into new wineskins (NIV).

As I thought about this, I wondered about new wineskins/old wineskins and new structures/old structures.
At times it seems to me that the inclusion of persons with disabilities into traditional church structures is tearing the old structures. The old structures are being torn

-through frustration of leaders, persons with disabilities, and their families
-because of advocacy of people who "get it" for persons with disabilities
-from people being uncomfortable
-because of need for providing "extra" support to persons with disablities
-over challenges to the traditional excuses for doing nothing
-through tolerance for a very limited set of social behaviors
-by confusion over theological "curriculum" versus theological "practice"
-by groups breaking up over membership of persons with disabilities
-because of the desire to maintain the status quo
-and so on and so on

I think the old structures are being challenged by the Spirit of the Lord who has finally gotten the attention of dense people like me.
I guess you might develop new structures through the changes that the presence of excluded people bring. I mean, the reason that we know old wineskins don't work, is because people tried to put new wine into them and the old ones burst. We know that we shouldn't use unshrunk cloth for repairs, because people have ruined old garments by sewing unshrunk cloth into them. But perhaps there needs to be a time when structures get torn and burst for a while. In that way, we will then see that we need new wineskins, new structures to house the new inclusiveness we are evidencing for all people. We are in the sewing new cloth patches on old garments and putting new wine into the old wineskins phase. Hopefully, this will not lead to our rejecting the new wine, but rather to us making new wineskins to house the new wine.

The Way online, makes the following statement.

The parable of the wine and the wineskins is about putting new wine into a suitable vessel or container, and there are two vessels or containers that the Holy Spirit dwells in today:
The Church.
The believer.

So to use their example, we need new wineskins within the church and we also need new wineskins within each believer. I think they are mutually effective on each other. Believers will effect the church and the church can effect believers.

McNair
(fcbu)

Church structures

The Oct. 31, 2006 posting entitled "Value Added" touches on the notion of church structure. This is something I have dealt with a bit in other entries in this blog. But I have been thinking a lot more about it lately. Where do new structures come from? Where will new structures come from?

Although I speak of the structures of the church not necessarily being helpful to inclusive ministry for persons with disabilities, I must admit that I am not entirely sure of what kinds of structures I would advocate for. For example, if you look at the "Value Added" entry, I describe a woman with mental illness attending a local church. It is clear that the existing structures are not working. I think that our typical response would be to exclude her from many of the activities of the group. That is what we have typically done. I know that because I don't see a lot of people with mental illness attending church. If they were in our midst, that would imply that the structures have changed in some way.

Changing structures begin with the decision,

"I want people with mental illness to be able to attend church."
"I want people with disabilities to be able to attend church."

Once that decision has been made, the rest becomes just logistics. How will I be able to include peopel with mental illness? How will I remove the exclusion (as Arthur Seale says) that keeps people with disabilities from being enfolded? Once again, the fact that the people with mental illness or other disabilities are not in our midst implies that we have not made the basic decision that all such people should be able to attend church.

Now there may be people out there who are clever enough to plan changed structures ahead of time. I don't claim to be clever, but I have a few ideas. But largely, the structures will develop as we work to bring people into church, as we work to make our programs no longer exclusive. Even as we strive to understand what ministry is.

In the Sept. 18, 2006 entry, I quoted Vanier's statement about the rectitude of doctrine vs. the rectitude of love. Instead of studying love, how to love, the different types of love, how much better to attempt to get love right relative to a person who is mentally ill, who wants to be in our midst.

"No, you can't be in our group because we are studying about love. We will not be able to cover all the material, or you might distract us too much should you attend. We want to be able to complete the love passages by the end of the month, so I am sorry but you can't participate."

But by having a person with mental illness in our midst and making the decision to keep her there, we will develop structures that will work. I repeat that the structures haven't developed in the past because we haven't made the decision to include in the past. I am also sure there is not a single answer; there are many ways in which inclusive ministry might be done.

New structures will develop when the existing ones are no longer working. I would argue that if people with disabilities cannot be in the typical Bible study group, then the typical Bible study group is all wrong. The person with the disability is not wrong, the structure, the "way we have always done things" is all wrong.

Please, for Christ's sake, invite the person with the disability into your group, remove the exclusion, and work to see what structures He will develop in your group that serve all. If God truly believes what Paul wrote,

On the contrary, those parts of the body that seem to be weaker are indispensible, and the parts that we think are less honorable we treat with special honor (1 Corinthians 12:22-23)

maybe we should believe it as well.

McNair

Deja Vu all over again

Well it happened again. I was visiting a dear friend of mine, Ed, and went with he and his great family to his church. The worship service was amazing and I was touched by the pastor's (a gal!) revealing sermon on forgiveness, healing and moving forward with God. She was so insightfut, so right on, and it caused me to really reflect on who I am. I will be chewing on her message fro some time to come.

Anyway, afterwards we went to the welcome area where I met several others in leadership. At one point, I related to another gal in leadership about my interest, my passion for people with disabilities to be embraced by the church. Earlier, in a Sunday school session, her husband, another pastor, spoke of how ministry shouldn't be like a buffet where we pick and choose what we will and won't do, or who we will or won't serve. Which of God's requirements we will or won't respond to. I related that I would be quoting him (but based upon his response, I won't). I told him about the church and people with disability relative to his statement about the buffet. He appeared to become very uncomfortable when I said THE church, not necessarily HIS church, was disobedient in regards to those with disabilities. After sitting through a training earlier where he spoke of first impressions at church and putting on the positive face to the public even if you don't feel like it, he suddenly expressed a great interest in getting out of the conversation. He was particularly interested in getting home so he could watch football on TV. So in other words, "Don't bother me with the needs of desperate ignored people in my community, I have a football game to watch." Deja vu. So the ignorance perpetuates.

Prior to him joining the conversation, his wife had been literally pummeling me with questions. It was like when I mentioned disability I turned a switch on for her...

Who are these people?
Where are these people?
How did you find these people?
How can we find these people?
What does your church do to help them?
What kind of programs do you have?

I could barely get a response out before she was asking another question. Her interest was so exciting and so encouraging. But in a moment, we moved from her sincere interest in disability to his, the pastor's, trumping and surpassing interest in football.

I think it was an old Phil Keaggy song that said,

Seems as if we've lost the nerves for feeling
and no one's in the mood to want to know
I've got news for you this is not a game
I've got news for you are you listening?
I've got news for you we are all the same
and when that is understood we can start to live again

Will this particular church ever get it, relative to persons with disability? I sure hope so. It is a fantastic church with its finger on the pulse of culture, it seems. The messages I heard from the leadership both touched me and moved me. My deepest prayers are with it for its success and growth. I would definately be going there myself if I lived in the area. No doubt!

But it will NEVER acheive all that God intends for it if it is more interested in football, or music or presentation or whatever else than it is in seeing ALL Gods people. ALL.

I truly do love what God is doing among young people in churches through the use of music and technology which are so much a part of what those in their teens through 30's are about. But without a deeper change, they are making the exact same mistakes that the churches they are replacing made. It is generational ignorance. They see themselves as hip. They think they are novel and up to date. They are not.

They are the exact same thing all over again.

But how about something truly different. How about including all of God's people. It seems we and particularly many in church leadership are oblivious to and don't want to know about disability. Especially if the Eagles are playing on TV.

McNair

Value added

I had a discussion this morning with several friends who also are persons in leadership within a local church. They described difficulties they were having regarding their efforts at integration of a person who is mentally ill into the youth group. In the course of the discussion, they related how the person monopolized the discussion, implying I guess that content wasn't able to be covered and that others did not have the opportunity to participate as well. There were other issues relating to the hostility of the person when offered help and the frustration among other members of the group my friends were trying to serve. Their concerns were all legitimate concerns.

However, when I had the opportunity to chime in, I spoke of how in my experience, persons with disabilities change those around them, and changes them often for the better. In Jean Vanier's "Becoming Human" he states,

That is why it is dangerous to enter into a relationship with the Lazeruses of our world. If we do, we risk our lives being changed (p. 71).

Persons with challenging disabilities surely do change those who aren't currently experiencing disability. Take this youth group for example. At the moment the person has changed the group by causing much concern on the part of the leadership. The person has caused the leadership to look at the person and make the determination of whether the person is worth their efforts or not. It has caused the members of the group to wonder whether they want to continue to be a part of the group. The person has caused the leadership to make a judgement of whether the content or the person is more important. The person has caused the leadership to wonder how far they are willing to go. All this just because of the person's presence there.

But I think a significant part of the problem that people have in these types of situations is that they see the person who doesn't fit in easily as a detriment rather than as a potential value added. As a man of 50, I can tell you that I remember very little of the content of the Bible studies I have participated in (even those I've led!) but I remember a few of the people in the groups. The leadership is very hung up on the content of the Bible study/youth group, but I will guarantee you that what the members of that group will remember for the rest of their lives is the person with mental illness in their group. Potentially they will also remember how a group of people in leadership treated that person, made that person feel like a part of the group rather than as a crazy person who needed to be tolerated. Perhaps they will learn how to interact with such people in the future because of the experiences they gained while in the youth group.

Perhaps the leadership might see the presence of this person as an opportunity to grow themselves and change the group members. You see, this perspective sees people who present challenges to the status quo as a value added rather than a detriment. I have the opportunity through the enfolding of an atypical person to promote real changes in the lives of those who want youth group to be only what they want it to be. I have the opportunity to challenge others with the trials and blessings of ministry. I have the opportunity to help others to understand service. These are the value added in addition to the obvious benefit of loving and supporting a person who is disenfranchised from all of the culture including the Christian subculture.

As is typical, however, rather than taking the opportunity to really change lives for a lifetime in a way that people will remember for a life time, I choose to lead a Bible study or youth group in the manner in which it has always been led. Oh we will have video games and lights and great music and great teaching. But instead of really demonstrating and thereby teaching others the benefits of truly loving others, those who are difficult to love, who won't get better and who will always be social skill deficient, who will always be mentally ill, I choose to make sure I get through Biblical passages about love and caring and acceptance.

One of my friends said that whenever someone tries to help the person with mental illness in the group, the person grabs a hold of him or her like a "freaking vise" (my translation). Well, duh? If I have been rejected because I am difficult to understand and someone finally shows me a little compassion, how would you think I would respond?

Please don't get me wrong. I am NOT saying that ministry to people with mental illness is in any way easy, because probably most often it is not. What I am saying is that the church must not reject those people, particularly when their behaviors are not dangerous, just annoying. I, we must model acceptance and see people who challenge us as those who most likely have been rejected by everyone (including us), those who need to be loved, and those who have much to offer to us, if only opportunities for growth.

McNair

Joni and Friends "Through the roof" conference 2006

This past weekend was the Joni and Friends "Through the roof" conference. There were 2 excellent keynote presentations as well as 3 breakout sessions across the day
Saturday. But for me, the highlight was Joni's presentation on Friday night. I have had the opportunity to hear her on several occasions and she is always great. However, this past Friday night, she was simply amazing. She riveted me as she spoke about ministry to persons with disabilities as being or becoming a "life and death" matter. She cited efforts at prenatal diagnosis and abortion, infanticide and euthanasia. She was very powerful as she informed her position with life experiences from her own life as well as those to whom she has ministered over the years. Anyway, I am hoping that either a recording or the actual text of the presentation will be made available. I actually felt as if the presentation had significance historically, particularily if it is made available to a larger audience.

It was reported that there were over 300 attendees from 21 states and even a few foriegn countries. It could actually be that the Church is waking up to the needs of persons with disabilities although there is still a very long way to go. I always feel encouraged after attending the conference both in that there are co-workers in attempting to open the church, and that people are experiencing the same frustration that I sometimes experience.

If you are a regular reader of this blog, you should consider attending the Through the Roof conference when it comes to your area of the world. Check out the Joni and Friends organization website http://www.joniandfriends.org/ to find more information or to contact them.

McNair

"It was easy to see us as people that Jesus loved then and loves now"

I have a good friend named Toby (visit his weblog). He is a man who has significant physical disabilities as a result of being attacked several years ago. He sends emails to a group of people several times a week which are very encouraging, and reflect his thinking about God, Christianity, disability, among other issues. Yesterday he sent out the following email, which I have reproduced here with his permission.

Monday, October 9, 2006 Addition
I think my desire for friends and people that I can identify with has come to a wonderful end. Yesterday, with my Sunday school class of handicapped adults, we got together and went to Huntington Beach and spent the WHOLE DAY at the beach. None of us is perfect, in the normal human sense, but each of us was good company.

I simply cannot understand what people are saying, so I often sit quietly for hours at a time but that’s OK. I don’t even notice when a long period goes by.

There were a number of other adults there who could do other things like get my food for me, get my pills, take me to the restroom, barbecue hot dogs, make smores, put sunblock on me, etc.. I watched them and none of them seemed to think less of us. So it was easy to see us as people that Jesus loved then and loves now.

So you bet your life, I felt at HOME.

A Servant for Christ,
Toby

This is the face the church needs to have towards all people, including persons with disabilities. Toby states, "It was easy to see us as people that Jesus loved then and loves now." One might conclude it was easy for him to see, but hopefully it was also easy for those around he and his friends at the beach to see as well. Matthew 9:2 says, "And seeing their faith..." he then goes heal the paralytic on the mat.

Is it easy to see that Jesus loved all people then and loves all people now at your church, at my church? What would it take for that to characterize the captial C church?

McNair

Disability studies from a Christian perspective

There is 20 year old academic discipline (it has been developing over the past 20 years) called Disability Studies. For those who might not be familiar with disability studies, the following is Society for Disability Studies mission statement:

The Society for Disability Studies (SDS) is an international non-profit organization that promotes the exploration of disability through research, artistic production, and teaching. Disability Studies encourages perspectives that place disability in social, cultural, and political contexts. Through our work we seek to augment understanding of disability in all cultures and historical periods, to promote greater awareness of the experiences of disabled people, and to contribute to social change.

I am asking any readers of this blog to please share with me places and programs where disability studies is considered from a Christian perspective. I honestly believe that the Christian perspective has much to offer form a positive perspective on the understanding of disability. I am aware of websites like the following which list disability study programs across the country. However, I am particularly interested in programs from a Christian perspective.
http://isc.temple.edu/neighbor/ds/dsprograms.htm

Finally, it is sometimes a criticism of disability studies that it doesn't address or include people with cognitive disabilities/mental retardation. So I would also be interested in disability studies from that perspective.

Thanks for your help

McNair

More from the Aberdeen conference

As I related, I recently attended a conference at the University of Aberdeen. There were two featured presenters, Dr. Jean Vanier and Dr. Stanley Hauerwas. Both of these men are professional heroes of mine. I could not believe that I would have the opportunity to meet them both at the same conference, particularly as the second day of the conference was with an intimate group of about 30 people with Vanier and Hauerwas.

Much of the focus of the conference was on the work of Vanier, particularly through the L'Arche communities. The second day of the conference was specifically dedicated to what the L'Arche communities have to say to the church. Dr. Hauerwas gave a presentation that day, in which he lauded Vanier's work, and the example of L'Arche as in many ways prophetic, as prophesy to the church. Allusions were made to L'Arche as in some ways being similar to a kind of monastic community. A question from the group of 30 particularly made that connection, which Dr. Hauerwas affirmed had occurred to him.

I then asked a question which I will have difficulty repeating here exactly, although Dr. Hauerwas' response will be much easier to reproduce. I asked something to the effect, "Although I have tremendous respect for Dr. Vanier and the work of the L'Arche communities around the world, don't you think the manner in which people in these communities interact with persons with disabilities should be like the "normal Christian life", the way in which we all should interact with such people? I mean, to set this community up as approximating a monastic model, only implies that it is not for everyone, as I for one will not be joining a monastery. Most people will not. Shouldn't this be the way we all should be interacting with persons with disabilities, within the churhc?" I actually thought I was asking a kind of a "soft ball" question, but his response shocked me. He said something to the effect, "I don't know, you have to ask Dr. Vanier." I can only assume I was misunderstood. I hope I was misunderstood. Otherwise, the love and compassion evidenced by people at L'Arche towards persons with disabilities, causes a world renown theologian and philosopher to reply basically that he doesn't know if that is the way Christians, or the church are to act towards people with disabilities.

A light came on for me.

This was a perfect example of what is wrong with the Church today. A brilliant man, one of the few theologians who has taken on disability and has written pretty powerfully about it, didn't know whether we as Christians, within the church, should be showing the love and caring demonstrated in L'Arche communities towards persons with disabilities. Maybe he was thinking of people living together in the manner of L'Arche, I don't know. But his answer was almost breath taking for me in illustrating how disconnected the church is about people with disability and who they are. Perhaps he needs to know more people with disabilities, perhaps he is afraid of people with disabilities. Clearly he holds those like Dr. Vanier who have done incredible work in this area in high esteem, but that can be a big part of the problem.

I have shared with the classes I teach that I have been told many times by a variety of people how wonderful I am because I work with persons with severe disabilities. I am a bit sick of that praise, however. I am at the point where I am going to respond, "If it is so wonderful, why don't you do it too!" Don't praise me and dismiss yourself. I wish you wouldn't praise me at all. Just you do what you can, so that all of us loving and supporting people with disabilities will become the normal Christian life.

And theologians will not be stymied by the question of whether I should love my disabled neighbor.

McNair

The ALL principle

It is funny how our human vanity impacts our theology. I look in the mirror and have little difficulty understanding that I (in my vanity) am "fearfully and wonderfully made" (Psalm 139:14). Or I look in the same mirror and with little difficulty affirm that I (in my vanity) am created in the "image of God" (Genesis 1:27). Or I look in the mirror, and think about the delight that God must have experienced when he, "knit me together in my mother's womb" (Psalm 139:13). I mean, c'mon, look at me, isn't it obvious?

But then I look at someone born with a severe physical or cognitive disability and all of a sudden I am unsure about the whole fearfully and wonderfully made stuff, which never occurred to me when I was looking at myself. I wonder about the knitting together as clearly God would not knit like that (thinking about people born with disabilities). I may think like that, but God has something to say to me as well. "Don't think more highly of yourself than you ought to think" (Rom. 12:3).

I wonder about the impact of vanity on theology, in terms of 1)thinking I am a day at the beach and 2)in thinking that people with disabilities are a NOT a day at the beach. There are so many scriptural principles which include the word "all" but I have missed what I call the "ALL PRINCIPLE" as I am typically focussed on persons without disabilities, people like me.

Scripture doesn't say, using the examples above,

"some of us are fearfully and wonderfully made"
"some of us are created in the image of God"
"some of us God knit together in our mother's womb"

Scripture also doesn't say,

"some of us have sinned and fallen short of the Glory of God"
"some of us are loved by God"
"we are to love some of the people around us"

All the teachings, all the promises, all of the scriptures, the reasons for Jesus' sacrifice, the whole thing is for all of us. Actually, it is for all of us or it is for none of us.

I honestly think that the church does not believe in the ALL PRINCIPLE. It takes most of what is in me to believe in the ALL PRINCIPLE. I have been socialized by society and by the Christian church to believe otherwise. It takes courage, because disability has been constructed by society and the Church to be something other than it is. I recognize that I am stepping out in faith when I believe in the ALL PRINCIPLE. I will meet with opposition whenever and wherever I stand up for the ALL PRINCIPLE.

It is crazy but it is true.

McNair

Men and women

This past week I was speaking to one of the classes I teach about the way people with disabilities are percieved, often negatively, by those around them. This is in spite of the fact that they think they are doing fine. Their only experience is their life experience and as far as they are concerned they are ok. I thinking through that, I came up with a metaphor, which might be helpful to some people in terms of understanding the point I was trying to make.

Now, I am a man. I was born a boy, and have grown up male. All I know is what it is like to be a male. Of course I love people of the opposite gender. I first loved my mother, then loved my wife and for the last 19 years have loved my daughter. I love those women, but I have no idea of what it is like to be a woman. I have no idea of what it is like to be three of the closest people to me in my life. I have some ideas of what it might be like to have me as a son, or as a husband or as a father, but I really don't know. Women tell me what they are thinking sometimes, but I really don't know what it is like to be one. Obviously, they don't know what it is like to be a man either. My mother, wife and daughter only know my thoughts to the extent to which I share them with them, and I have been told by them at times that I don't understand (ostensibly their women's perspective). I am sure that that is the truth.

However, imagine that I decided that because women are not men, their lives are in some way diminished, disabled. They think they are just fine as women, however, I think I know better. I therefore impose my beliefs on them. I think I know what it would be like to be a woman, and if I were a woman, I would be upset that I am not a man. I convince them that they have a poor quality of life, or get them to believe that their physical womanness is an impairment of which they should be ashamed. Perhaps I conclude that their differentness from me is not a difference, it is an impairment to which discrimination is attached (some of you may argue that this actually occurs, and I would be hard pressed to disagree). But to continue to press this metaphor, instead of me as a man seeing women as part of the natural diversity of humanity, as my equal yet in some ways different from me, imagine that I see them as "other," as very different from me. Not only that, imagine that I think they are dissatisfied with their lives as females and that they would choose death over being a woman, so deep is their wish they could be a male like me.

Can you catch where I am going with this metaphor? I think there is a lot overlap with the way in which people with impairments are percieved, particularly those with disabilities that they are born with. I only know what it is like to have my level of cognitive ability. So I assume those with a lower cognitive ability level would wish to be me. I only know what it is like to have my other characteristics, good vision, healthy, etc. And because I am satisfied with my life having my characteristics, I assume that those who don't have my characteristics are dissatisfied with their lives. That because they are not me, that they are in some way suffering, or depressed, or something else negative in character.

You might say that this sounds foolish, however, this perception drives the movement to prenatally diagnose and abort babies with disabilities. Take down syndrome for instance. We are told by the medical profession that obviously, people with down syndrome suffer, are dissatisfied with their lives because they don't have normal intelligence, or other characteristics that we (people without down syndrome) have. At least that is what people think who are behind the prenatal diagnosis and abortion movement. They take the lives of infants with down syndrome out of "compassion" for what the persons with disabilities are not.

But just as certainly as I don't know what it is like to be a woman and a woman doesn't know what it is like to be a man, I dont' know what it is like to be a person born with down syndrome. All I do know about that life experience is what they tell me about that experience. And what do they tell me? They tell me that they are happy with their lives. Many would say that they don't think they even have a disability (something they perceive negatively, probably through their socialization). Yet I believe my daughter when she says she is happy (even though I don't know what it is like to be a woman) but I don't believe the person with down syndrome when he or she tells me she is happy because I say that I would not want to live with that disability if I had it.

In the same way that I don't know what it is like to be a woman, I don't know what it is like to be a person with a disability. In the same way that a woman does not know what is like to be a man, a woman without a disability does not know what it is like to be a person with a disability.

May God forgive our society for projecting its negative perceptions on people with disabilities and then killing them on the basis of our negative perceptions through abortion, infanticide and other approaches. May God stop us as well.

McNair

The gift of time

As I mentioned, I just got back from a wonderful conference at the University of Aberdeen in Scotland, hosted by Dr. John Swinton, which featured Dr. Jean Vanier and Dr. Stanley Hauerwas.

One of the ideas which came through at the conference was the notion of being a "friend of time" or giving "the gift of time" to persons with cognitive disabilities in particular, but to persons with disabilities in general. I believe it was Vanier who spoke about how those who are well connected in society have little time while those who are not well connected have a great deal of time available to them. The question is how to bring these two groups together. One way is for the well connected to slow down. To become a friend of time rather than a slave to time. It requires serious life changes on their part to make this happen.

Coincidentally, as Kathi and I were hurrying from flight to flight on the way home, at one point I exited the plane behind a man who appeared to either have hemiplegia or who had had a stroke. His slow movement caused the line to slow down quite a bit. It struck me even in that situation, that I needed only to slow down a bit to his walking pace to still get where I wanted to go. I was literally physically slowed down, and for a moment experienced "exiting from an airplane" from his perspective in terms of the time it took.

The conference conversation also talked about taking the time to just have fun together with others. Vanier spoke of how most of the time he spends with his friends with cognitive disabilities is spent "fooling around" with them. I was encouraged by this from such a respected man as that is how I spend much of the time when I am with my friends with cognitive disabilities. He said there is also lots of celebrating of little things in life, taking time to celebrate those things.

For about 5 months of this year, I was spending one evening a week (for about an hour or so) at a group home on my way home from work. We would talk, eat some ice cream, have a catch with a baseball, or they would encourage me as I try to learn to play the guitar. They are always there, ostensibly waiting for me as I hurry from place to place. Being with them was a chance for me to slow down and try to be a friend of time with them. I the connected one, being with those who are less or not connected.

Luke 12:48 says, "every one to whom much is given, of him much will be required..." Much will be required of the well placed in society, not the least of which is their time. I am well placed, but even the well placed know that they have time if they make it. Please don't tell me you are too busy, because I am too busy too. But I have the ability, partly because I am well placed, to become a friend of time, and give of my time to those who would enjoy my company. It is a choice I have to make. It begins with me being realistic with myself, and calling myself into account for the choices I make.

McNair (fcbu)

The rectitude of doctrine vs. the rectitide of love

I had the pleasure of attending a conference last week at the University of Aberdeen in Scotland. The conference was hosted by Dr. John Swinton, and featured Dr. Stanley Hauerwas, a theologian/philosopher and Dr. Jean Vanier, writer and founder of the L'Arche communities.

I asked Dr. Vanier why he thought it was that the church has not been as responsive to persons with disabilities as L'Arche as endeavored to model. His response was that we as a church are focussed on "the rectitude of doctrine" when we should be focussed on "the rectitude of love." The rectitude of doctrine vs. the rectitude of love is something worth thinking about. No one is implying that doctrine is unimportant. Rather, doctrine can be dry and harsh. Love by comparison can be soft and accepting. In the case of persons with disabilities, we need love and doctrine to be as correct as possible.

May God open our eyes to the rectitude of love.
McNair

Assisting to gain independence

I have a friend experiencing a severe physical disability. He became disabled later in his life. He was already established with a job, family, etc. Most of those aspects of his life have been lost or significantly changed as a result of his disability. However, there are are positives and negatives in those changes he himself has reported to me.

As he has recovered somewhat from the original insult which caused his disabling condition, it has been interesting to see the interaction between him and his family. They have done just about everything for him for several years, and have mostly done those things joyfully. Interesting, however, that as he begins to get some of his abilities back (taking care of his own toileting needs, making various decisions about his life, etc.) there seems to be an almost resentment and resistance on the part of his family towards those changes. They are used to him being dependent upon them and as he gains in independence, they kind of resent it. I would have thought they might welcome the independence as it would free them up somewhat, and they could celebrate the growth he is showing.

It reminded me of the parent who struggles with their teen who chafes against the restrictions of the household. I have never really had experience in this area with my own grown up children. We have always gotten along famously. I have been blessed in that I can't even remember a real argument with either of them. But is it still somewhat disorienting for them to become as independent as they are. As a parent you live your life caring for the little ones you love so very dearly, and because you have done a good job in their upbringing, they become self-confident and independent, heading off to live their lives. But because independence is all so new to you as a parent(even though you see it coming) it does kind of disorient you.

It is my prayer that my friend's family will see my friend's growth as an occasion of celebration and joy, and will increasingly turn over the decisions of his life to him. I hope this not only for my friend, but also for the family.

McNair

The "embarrassment" of disability

In the book Defiant birth: Women who resist medical eugenics the author Melinda Tankard Reist takes on the notion of prenatal diagnosis leading to abortion through the stories of women who having received the diagnosis that the child they were carrying was determined to be disabled, but chose to have the child anyway. Of course she relates stories of those who were misdiagnosed, however, the thrust of the story is the experience of women who gave birth to children who were born with various disabilities. These disabilities include anencephaly (a disability which typically takes the life of the newborn within hours or days) and of course down syndrome. There are many amazing lessons to be gained. One, for instance relates to carrying a baby with anencephaly to term. Overwhelmingly, doctors would advocate for abortion of such children as they will die soon after birth anyway. Tankard Reist, however, says that if you knew your child would die in an hour or a day, would you choose to kill your child or would you enjoy the hour or day you had remaining with your child? Mothers spoke of their child living his entire life in their arms, of celebrating the 1 day birthday, or the trip home from the hospital. The also spoke of the impact for good the birth of the child had on their lives.

One story really touch me. Written by Elizabeth Schiltz about her experiences carrying, having prenatally diagnosed, giving birth and raising a child with down syndrome. She relates that when she took her baby out into the community there were actual comments made like "Why didn't you have prenatal diagnosis?" She said that many of the stares she received seemed to give the same message. There is a kind of embarrassment with goes with choosing to have a child with a disability, or simply having a child with a disability under any circumstances. Lets think this embarrassment through a bit.

Why would someone be embarrassed about anything in their lives? Perhaps I do something foolish and I don't want to be laughed at. Perhaps I do something wrong and I don't want to be found out. Other reasons could be thought of as well. The bottom line is that I am concerned about what those around me think about me, or my behavior, or my decisions. Teenagers in particular struggle with worries about the perceptions of their peers. As a parent I have often made a special effort with my kids to deliberately be goofy, or silly, or dress oddly in public so that when people look at me strange or if my children say, "People are looking at you" I can respond, "I could care less what people think of me. Am I doing anything wrong? (with my goofiness or whatever). If not I am not going to let them determine what I will do." They are on to me now, and know better, often saying themselves, "I don't care what people think about me." That is good, I think as it develops self confidence, but there is something even better that could happen. What if people would come up to me and say, "I like the way that you express your individuality." That would be an even more powerful witness to being a free spirit.

But that is what Christians, of all people, need to be doing. When we see a child with a disability, we should treat it like any other child we would meet. We should delight in her, play with him, tease with her. If I approach a family in my church or community who has just given birth to a child with down syndrome and say, "I am so sorry, I will pray for you." We don't bless that family, we embarass them when there is nothing to be embarrassed about. They have received the gift of a child that God has given them, often in the face of incredible pressure from the medical profession to abort the child, and our response is to embarass them for their heroic choice. Tankard Reist cites a statistic that 86% of babies prenatally diagnosed as having down syndrome are aborted by their parents. Do you, does the church add to the certainty that those children will be aborted by our embarrassment of parents, embarrassment of people with disability? As stated elsewhere in this blog, are we complicit in the abortion of babies with disabilities through our lack of caring or priority giving to the lives of persons with disabilties?

Those who would reject parents of persons with disabilities for choosing life or would reject people with disabilities themselves should be embarrassed, should be ashamed of themselves, not the other way around. We need to "not be conformed to the patterns of this world but be transformed by the renewing of our minds" ala Romans 12. What have you done in your life to contribute to 14% of families, moms and dads who chose to give life to a child with down syndrome?

McNair

Reflecting their surroundings

I was in a classroom this morning visiting a student teacher of 10 year old children with moderate to severe disabilities. Some of the children had autism, others cognitive disabilities. As I sat in the back of the room, there was suddenly a lot of screaming from the next room. Ultimately a student was placed in the little office which connected the two rooms. For the next 10 minutes you would hear a calm woman's voice followed with screams of "Shut up b**ch." Over and over again.

In another setting of children with severe disabilities of kindergarten age, there was a boy who didn't communicate other than to say "Hi" on occasion. However, as he moved through his day, he constantly repeated, "F***ing sh*t." That was his complete language repertiore. Knowing the number of times something has to be repeated in order to find its way into such a student's language repertiore, I couldn't help but wonder about the environment these students were living in.

Maybe people around them thought them cute in their nonsensical swearing. However, that kind of language is not thought of as funny in many, maybe most social settings. People who talk that way will never be able to have any job in which they work with customers. You need only tell your boss "Shut up b**ch" once before you will be fired (in case you didn't know).

We, however, in the church need have patience and acceptance for people who use such language while also trying to teach those individuals that such language is not appropriate. However, we must take the position that the swearing cannot be a reason for exclusion from a church setting.

I used to work with kids with serious emotional disturbance. I have been called many memorable things as has my mother, my wife, and anyone else they thought might cause me to get angry. In every case, I have had to repeat to myself, "This is the disability talking. This is the disability talking." Had I rejected them, I would have supported what they were trying to prove to me. That is, basically that they are worthless and that I would ultimately reject them. It is tough when you faced with such a barrage, however, in these cases it truly is the disability speaking.

In the case of the severely disabled children above, it isn't really the disability talking as in the second case, he was doing little more than making sounds that he had heard and had discovered would get a reaction positively or negatively from his environment. In the first case, he learned that that is how you interact with your environment by examples that had been provided to him. His particular choice of language he probably also discovered got the maximum reaction from his environment.

Is the church prepared to include people such as these or are we only willing to take those who act in a particular socially circumscribed manner? If these types of children and adults are in the congregation, how do we prepare congregational members for the things they might say or do? I think it begins by having those people present to begin the conversation. I think people have not been forced to come to grips with their faith in terms of having demands made on them in areas of acceptance and understanding of others. The church environment has in many ways become too sterile.

I need to begin with acceptance and then move to change. I don't begin with change and then move to acceptance.

McNair
(fcbu)

200 Posts

Today's entry is the 200th post to this weblog. So what have I learned over the past 2+ years?

I have learned that thare are many people across the country who resonate with the various quotes from authors I have provided here.
I have learned that there are too many people who are frustrated with the relationship they and their family member with disability have with their church.
I have learned that there are churches who do not have disability minstry on their radar screen.
I have learned that there are churches who not only do not have disability minstry on their radar screen they refuse on many levels to add it to their radar screens.
I have learned that what is really needed is quite simple, largely being about relationships.
I have learned that I have a lot more to learn.

As I have been writing a book I am hoping to have published that will probably also have the title disabled Christianity, perhaps the greatest benefit to me in writing is that I am pulling together the various topics of the last 2 years. I ask for your prayers as I move forward on that project.

This summer I have been very busy with a variety of project, however, I hope to get back to more regular postings shortly.

Thank you for your readership!
McNair

Its about relationships

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

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

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

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

McNair

Religious liberty in group homes

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

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

Thank you for your assistance.
McNair

Choosing disability

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

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

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

McNair

Bruce and Cam (aka Martha and Mary)

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

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

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

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

(fcbu)
McNair

Biblical language

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

Jesus and other biblical writers change how we think about things. They redefine words as illustrated by the following.

Foolish – one who hears words but doesn’t put them into practice (Matthew 7:26)
Good – one who bears fruit (Matthew 7:17)
Servant – we are all to be servants of all (Mark 9:35)
Wisdom – the fear of the Lord (Psalm 111:10)
Strength – is Christ (1 Corinthians 1:30)
Poor – poor in the eyes of the world but rich in faith (James 5)
Humble – those who are lifted up (Luke 1:52)

We are also instructed to, give to the needy (Matthew 6:1-4), now worry about our lives (Matthew 6:25), and seek first the kingdom and righteousness (Matthew 6:33).

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

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

McNair

Religious liberty

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

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

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

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

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

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

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

McNair