Simon the shoe maker

In Cairo, there is a Coptic Christian church called "the hanging church" which is old and absolutely beautiful. In the entrance hallway to the church there are several mosaics depicting a miracle which allowed the church to be built. The story is told that the bishop wanted to build a church. However, the land they owned was on the side of a mountain and could not be built upon. However, the Moslems in the city had plenty of land. The bishop went to the Moslem leaders and asked for some land. The Moslem leader replied that in the Bible, there is the part where Jesus says that if someone has faith the size of a mustard seed, he can move mountains. So they could just ask God to move the mountain if they had enough faith. The bishop was very disturbed. He wanted to believe that through faith he could move mountains, but doubted. He got the congregation to fast and pray for 3 days asking the Lord what to do. In some manner (I don't remember how) God appeared to him in a dream telling him that there was a man in the city who had the faith required to move the mountain (see picture of priest dreaming and him being shown the cobbler). The man was Simon the cobbler. So the bishop found him and asked him to pray that the mountain would be removed. He did and there was an earthquake that moved the mountain! (see picture of the miracle occurring with the sun shining through the crack in the mountain on the left side of the picture) The church was then built.

This story struck me in a variety of ways, but what touched me was that God knew who had the most faith in the city, and it was the cobbler, not the bishop or any of his priests. There is a great lesson in this story about faith, and people, and how God sees the world. I have stated elsewhere in this blog that when I speak to my group of friends, many of whom have intellectual disabilities, I do not stand before them as the one with the greatest faith, or the greatest morality. I may have been given the greatest opportunities, but that only makes me all the more accountable for the fact that I am not the one with the greatest faith or morality or love for others. No, I am confident that one of the adults with disabilities has the greatest faith and that causes me to approach all of them in a much different manner. You see the thing that is the most important thing in life, Faith in God, they may have gotten correct. Their complete faith is the stuff that can move mountains.

However, the church and too often me as well, focus on things that are NOT very important in God's eyes. (see close up of Simon the cobbler at left) Things like appearance and intellect. My friends with intellectual disabilities would be high on God's list for praying to move mountains, or loving others in a Godly manner. I wonder how far down on the list pastors and church leaders actually are. They might be very embarrassed to find out.

I believe in the prayers of my intellectually disabled friends for these very reasons. I know of their faith and I know of their love. So I truly do covet their unpretentious, simple prayers spoken out of faith and love.

McNair

Godly Sorrow

Kathi and I just returned from a trip to Ukraine and Ethiopia. While in Ethiopia, I was asked to do a morning devotional for the team I was a part of. I wondered about how to integrate the things we had been experiencing there. The poverty is overwhelming to see. As I looked around I saw a section in the back of the Bible that addresses or offers verses related to how someone might be feeling. Sorrow was one of the listings with the verse, 2 Corinthians 7:8-11. Verses 10 and 11 jumped out at me in particular. "Godly sorrow brings repentance" and then later, "See what this Godly sorrow has produced in you; what earnestness, what eagerness to clear yourselves, what indignation, what alarm, what longing, what concern, what readiness to see justice done."

As I reflected on these things, I noted that
1. My time in Ethiopia has brought out a kind of Godly sorrow when I see the poverty and know my wealth.
2. It brings out a kind of repentance in a Luke 12:48 (to whom much is given much is expected) kind of way.
3. Looking at verse 11, Godly sorrow brings about
-earnestness - honesty with myself and others
-eagerness to examine myself - What can I do? How can I help? How do I contribute to the bad?
-indignation - what I see should not be
-alarm - something must be done immediately
-longing - for a different reality for people, that God's kingdom would come
-concern - for people who have no work, little means for livelihood, a weak or poor government, no safety net
- a desire to see justice done - in the lives of the people, poor and disabled who I met in Ethiopia.

This section of scripture almost strikes me as a recipe for integrating such a mission experience as one works through each of the aspects of the verses, ending with a readiness to see justice done. It is almost as if there are steps in a process that brings us to a point where the Godly sorrow late led to repentance, now takes us to the place where we are prepared to to what is necessary, to make the sacrifices, to see justice done when perhaps prior to embracing the Godly sorrow, we had not humbled ourselves to the point of wanting to see justice done. Before we weren't ready, but now we are.

The Christian church needs to work through this process in regard to persons with disabilities. It begins with repentance. It was amazing that I was sharing Wolfensberger's wounds with a group of pastors in Assela, Ethiopia. When I came to wound 16 (I believe) about exclusion from higher order thinking including church and religion, I commented that the Christian church was guilty of all of the wounds. Of course as I was speaking, my words were being translated. I made the comment, "May God forgive us" in reference to the Church's complicity. As I turned back to the screen, the entire group of about 100 pastors all said in unison in their language, "MAY GOD FORGIVE US!" It was very powerful, but perhaps the first time that when I shared this information, the audience, pastors in particular, responded in such a way. Too often the response is "It is not as bad as you think." Praise God for the Ethiopian pastors who simply responded with a statement of repentance which has to be the point of beginning. No wonder that there has not been earnestness, indignation, alarm, longing, concern and a desire to see justice done in the church toward persons with disabilities. There has yet to be repentance.

I pray that the church will wake up in Godly sorrow in the same way that the Corinthians woke up to Paul's confrontation in the letter that this section of scripture refers to.

McNair

Come without your "competence"

My daughter Amy graduated from Seattle Pacific University last weekend. She had a wonderful experience there.

On Sunday, we visited University Presbyterian Church and heard an excellent sermon by Pastor George Hinman. He told how he is not a very good golfer. But when he is playing on occasion with friends, he always is worried at the first hole because there are always a lot of people standing around waiting to begin their round looking on. He shared how he wants desperately to get off a good first shot, in spite of the fact that he is not a good golfer (I have felt that way too..."Please God, let me not miss, or totally hit it sideways"). Relating that to his and our problem with pride, he said something to the effect that, "the point of greatest pride is wanting to present myself as something that I am not." In the case of his story, he goes to the tee, and wants to present himself as a good golfer so that he will not be laughed at as a bad one, and that he will get praised by those looking on who might think him a good one. His point in the golf analogy was that we should come to God, without our "competence" at least our self perceived competence.

I immediately thought of my friends with disabilities and how they model that for me. My friends with severe physical disabilities cannot fool me into thinking that they have great physical abilities. My friends with intellectual disabilities cannot fool me into thinking they have great intellectual disabilities. One friend in particular who because of his intellectual disability cannot read, tries desperately to impress those around him with an ability to read, and although we attempt to help him, or point out correctness when he reads something right, we recognize that he is fooling himself and those of us around him see that.

What competence do I think I am impressing God or those around myself with? I guarantee I may be very impressed with myself, however, God looks on and probably "shakes his head" pointing out to me how I sometimes get things correct, but also recognizes that I am fooling myself in thinking that I am something that I am not.

But the pastor also made the point that it is not God's desire that I live in despair at my lack of competence. No, God frees us from the burden of despair by always giving us hope. Not hope within ourselves, but the hope that faith in Christ brings. I have a hope of forgiveness through Christ. I have a hope of acceptance through Christ. I have a hope of growth in obedience through Christ. I have a hope of being used by Christ. I have a hope of a life together with God through Christ. That hope makes me smile! I come to God as I am, he sees me as I am (maybe I sometimes see myself as I am, too), and we move on from there.

One last point on the church in Seattle. Beautiful service, wonderful music, powerful sermon, friendly people, however, those at the information booth knew nothing about a program including people with disabilities that we were told was a ministry of the church.

McNair

Jean Vanier on Lazarus

Jesus' friend Lazarus, may have been a person with a disability. That is what Jean Vanier (L'Arche communities) suggests. He states the following

Lazarus, loved by Jesus
This is one of the simplest and most beautiful
chapters in the Gospel of John.
It reveals how profoundly human and totally divine Jesus is.
It is about Jesus loving people and raising from the dead
a man who had already been in a tomb for four days,
whose body was starting to decompose.
It is about Lazarus, who was sickly (asthenes).
In the language of today, we would probably say
"who was disabled."
The Greek word asthenes can be translated as
"sick," "without strength," "feeble" or "insignificant."
Lazaurs is deeply loved by his two sisters
and Jesus has a special relationship with him.
At one moment his life is in danger,
so the two sisters send word to Jesus:
"Lord, the one you love is sick." v. 3
And the evangelist tells us:
Jesus loved Martha and her sister and Lazarus. v. 5
Later Jesus says:
"Our friend Lasarus," v. 11
and further on in the chapter,
when people see how Jesus is deeply moved
by the death of Lazarus, they say:
"See how he loved him." v. 36
This is the first time in the Gospel of John
that we hear of Jesus' love
for individual people,
the first time that John, speaking of Jesus,
uses the Greek words agape and philia.
(from Drawn into the mystery of Jesus through the Gospel of John, 2004, p. 195).

There are clues in passages about Martha and Mary and Lazarus that might give you the impression Vanier suggests about Lazarus being disabled. In addition to the use of the word asthenes in reference to Lazarus, we see in Luke 10:38 that Martha is the head of the household, with her sister Mary and brother Lazarus. Culturally speaking, one would suspect that at that time if Lazarus was the brother in the family, he would be the head of the household. He isn't which raises some questions as to why he might not be. Additionally, we note that neither Martha nor Mary are married although elsewhere we get an impression of Mary's past (John 11:2 perhaps pointing to Luke 7:36). John 11 says Jesus loved Martha, her sister and Lazarus, he once again listed last in the passage. The name Martha means lord or master.

I do not have the ability to study the language or culture of the time to determine the validity of Vanier's suggestion about Lazarus, however, it is interesting to think about. Jesus' friend, the one who he wept over at his death just may have been a man with a disability of some type.

McNair

Graceland

Im going to Graceland
Poorboys and pilgrims with families
And we are going to graceland
My traveling companion is nine years old
He is the child of my first marriage
But I've reason to believe
We both will be received
In Graceland

Paul Simon says that this is the best song he has ever written which is saying a lot. My son, Josh, got me a DVD about the Graceland CD that I recommend. It talks about South Africa at the time, how some felt that Paul Simon was exploiting the racial discrimination there and so on and so on. Simon hopes that the music may have contributed in some way to the positive changes that have occurred there over the past 25 years.

But as I was listening to Simon talk about Graceland, and the lyrics were swirling in my head, a connection was made for me. Graceland was apparently named after a woman named Grace, but Simon saw a different connection in the name perhaps related to a future for South Africa. The South African Truth and Reconciliation Commission under the leadership of Nelson Mandella and Bishop Desmond Tutu in so many ways made the name Graceland a truly fitting name for a country fighting to shed itself of racism, using the incredibly powerful weapon of grace. I shake my head in amazement and disbelief every time I read or think about the grace shown largely by the black leadership of that country. The awesome power of God's forgiveness was and is on display in South Africa. It is a lesson for the generations.

The church should be known as Graceland. That song title and some of the lyrics could be or should be how the church is known. "Poor boys, and pilgrims with families" are the people the church should be reaching out to. People who have been broken "my traveling companion is 9 years old, he's the child of my first marriage"
independent of who they are. I think about people with disabilities. When we think of the Christian church, we should be thinking, "But I've a reason to believe we both will be received in Graceland." Wow, can you imagine people on a pilgrimage, people who are disability imigrants, traveling to a Christian church thinking 'I have a reason to believe that I will be received.' I can imagine people who feel like imigrants feeling like they are coming home when they come to the church.

But we have much to do to be a place where people will have a reason to believe that they will be received. It begins, I think, with a decision that we want people with all types of disabilities in our churches. If I decide that I want you, the rest becomes pretty much just logistics in terms of how do we make adjustments, make changes, do whatever is necessary in order for you to be welcomed. If I as a beginning point do not want you, I will communicate that in my practices. I will communicate that you are "putting me out" with your presence which I think is how many churches make people with disabilities and their families feel. Yes there are those who literally say, "Go somewhere else." But perhaps more often, we blurt out in exasperation, "All right, I'll try to figure out how to make a place for you" said with the expectation of great appreciation being the response on the part of the people with disabilities and their families.

But that is not Graceland.

When people come to our group, I try really hard to communicate that any changes that we may need to make to include them are, will be, or were easy, were effortless, independent of how difficult they may have been. We do that because that is what grace is.

Think about your salvation, Christian. All you had to do was to say, I am guilty of sin, and I look to Jesus for my salvation...I believe. What a comparatively easy thing for you to do. Why is it such? God may make it appear effortless on your part, however, think of the work Jesus needed to do for it to be "effortless" for you. I wonder about Christians who are unwilling to dispense grace to others. Are they not aware of the extreme grace that they have received? Jesus talked about this in Luke 7:36-44. If we understand that we have been shown so much grace, why can't we show a little more grace to others, others desperately in need of grace? I want the church to follow that example in the enfolding of all types of people. Follow the example of God, in that I am willing to do what it takes to make you a part of the Body of Christ. Come to this place known for grace in its fellowship, because it reflects the grace of God that all in the fellowship enjoy.

McNair

Peter Maurin: Wisdom from Easy Essays

Peter Maurin along with Dorothy Day were the founders of the Catholic Worker Movement. Maurin is also somewhat known for his "Easy Essays" that were often in the movement's publication "The Catholic Worker". Here is one of them

Feeding the Poor at a Sacrifice
1. In the first centuries
of Christianity
the hungry were fed
at a personal sacrifice,
the naked were clothed
at a personal sacrifice,
the homeless were sheltered
at a personal sacrifice.
2. And because the poor
were fed, clothed and sheltered
at a personal sacrifice,
the pagans used to say
about the Christians
"See how they love each other."
3. In our own day
the poor are no longer
fed, clothed, sheltered
at a personal sacrifice,
but at the expense of the taxpayers.
4. And because the poor
are no longer
fed, clothed and sheltered
the pagans say about the Christians
"See how they pass the buck."

What does the church's interactions with people with disabilities in the church, in Christian schools, in other forms of the church tell the world about what Christians think about people with disabilities?

In another Easy Essay, Maurin says,

Christianity Untried
1. Chesterton says:
"The Christian ideal
has not been tried
and found wanting.
2. It has been found difficult
and left untried."
3. Christianity has not been tried
because people thought
it was impractical.
4. And men have tried everything
except Christianity.
5. And everything
that men have tried
has failed.

The church as the whole, complete body has never been tried because the presence of everyone would imply change and change is difficult. Integrating people with disabilities has not been tried because it is thought impractical. The integration that people seek, particularly in the secular world of professionals for persons with disabilities is available in the Christian church. We, however, seem to think it easier to not try it, and leave the state to do it. But that is not entirely true. Do you know that research indicates that religious parents are more likely to see the care of their children with disabilities as their own responsibility while those who are not religious see it as the state's responsibility? So some of the church are trying. The research just seems to indicate that they are not being supported by the rest of us, by the body.
One more from Maurin.

Houses of Hospitality
1. We need Houses of Hospitality
to give to the rich
the opportunity
to serve the poor.
2 We need Houses of Hospitality
to bring the scholars
to the workers
or the workers
to the scholars.
3. We need Houses of Hospitality
to bring back to institutions
the technique to institutions.
4. We need Houses of Hospitality
to show
what idealism looks like
when it is practised.

The same could be said about individuals with disabilities as with the poor. Can you imagine that? Can you imagine the "pagans" as Maurin puts it saying, "Go to such and such church and you will see what idealism looks like!" I would love my church to be accused of idealism in its interactions with persons with disabilities. Idealism in practical service. Idealism, through faith, in actually embracing Christianity in relation to people with disabilities to see what Christianity might actually be like. I get excited just thinking about that. Can you imagine what the church would look like if Christians actually fully embraced Christianity? It could be that people with intellectual disabilities in their childlike faith might be the ones to actually lead us there.

McNair

Disability natives vs. Disability immigrants

In his article, "Digital Natives, Digital Immigrants" (from On the Horizon, NCB University Press, Vol. 9, No. 5, October 2001) Marc Prensky makes the distinction between what he calls digital natives and digital immigrants

"But the most useful designation I have found for them is Digital Natives. Our students today are 'native speakers'of the digital language of computers, video games and the Internet. So what does that make the rest of us? Those of us who were not born into the digital world but have, at some later point in our lives, become fascinated by and adopted many or most aspects of the net technology are, and always will be compared to them, Digital Immigrants" (p. 1-2).

I think this distinction might be applied in a similar way to the world of disability. Throughout history, societies have always seemed to be disability immigrants. We seem to be always surprised by people affected by disability. Children are born to us with a disability and we have no experience with them. People with disability come to church and we have no experience with them. People with disability enter the community and we have no experience with them. It seems individuals, families, communities and the church are constantly in the beginning stages of a learning curve. In spite of thousands of years of people being born with disabilities or being affected by disability later in their lives, we are consistently surprised by them and like a 30 year old sitting in front of a computer for the first time are totally lost.

But Christians, all Christians should be disabiltiy natives. This should not be the case for Christians. This should not be the case for the Christian church. The simple act of someone attending any Christian church should result in their becoming a "disability native" because the presence of people with disabilities there would be expected, kinda boring really in the same manner that the presence of children, or college students, or old people is kinda expected, kinda boring, kinda typical.
Before I had children I had a pretty good idea of what children were like because I was in places where children were. I saw them at church or in the community. I am a native when it comes to children.

I am confident that people who are new to disability enjoy their interactions with those who have experience with people with disabilities. Not to brag, but I am sure that I calm people who are new parents when I enter their orbit. I have a pretty good idea of educational ideas that should work. I have a pretty good idea of behavioral issues they will face. I even have a decent notion of what the future will probably look like for that individual based upon years of experience. I am not too bothered by disabled children with behavior problems. I am not a disability native, but I have been an imigrant for a very long time.

My prayer for the church is that we will raise generations of disability natives. People who are not afraid, or ashamed, or have goofy ideas about the why's of disability theologically. People with experience. People who are undaunted by just about anything that a person with a disability might do intentionally or otherwise. A church full of disability natives would be a softened environment for all. An environment that is relentlessly accepting of individual differences. My social faux pas would be more readily overlooked because the presence of people with social skill deficits would make the social environment less rigid. As I said softer, more accepting of difference. It is universal design applied to social relationships. The result of accepting people with social skill deficits is that I experience greater acceptance as well.

In the public schools today, there is some degree of disability native development. At least I can hardly go to public school without seeing other students with disabilities although I may not have meaningful social integration resulting in relationships with them.

But how I wish that were the case in the church.

Look at a youngster playing deftly with his hand held video game. He does it effortlessly as if he were born with the game in his hands.

Imagine a youngster playing deftly with his friend with disabilities. Imagine an adult at coffee with his friend with disabilities. The conversation flows effortlessly, speech impediments overlooked as if they did not exist. They do it fluently, smoothly, NATURALLY! Because it is natural for them. They are Christians who have grown up in a church, which means they are disability natives! Imagine.

McNair

This is how we do it

So I heard through the grape vine, from a very reliable source about a Southern California Christian college that is trying to start a program to prepare teachers to work with students with moderate/severe disabilities. A student teacher supervisor was working with a candidate, doing student teaching. For a year, the candidate did nothing. The supervisor from the Christian college tried and tried to get the student teacher to educate the students with severe disabilities but he did nothing. The student teacher supervisor told his supervisors at the university that he would need to flunk the student teacher because he wasn't doing anything with his students. The response from the CHRISTIAN college? Hire another supervisor that would pass the student teacher because they are trying to get the moderate/severe teacher training program established and they didn't want any bad press for the new program. In other words, "We as the Christian college don't care about the education of the students with severe disabilities. We just want to expand our programs into other areas of Southern California."

I have seen this approach numerous times in state universities. Many state universities although they have moderate/severe programs haven't the foggiest idea what they are doing in this area. I know because I speak to students from those universities, and at times have assisted state universities with inservices about the most basic of things, that you would think their students would have learned in introductory classes.

How are students with moderate/severe disabilities ever to have a fighting chance at an education when teachers are poorly trained? What does it say to future teachers in that program about quality education for students with severe disabilities? I will tell you what it says. It says that we want to train babysitters for the mod/sev classrooms of California. As much as I want Christian colleges to wake up to the lives of people with disabilities in the community, literally, for God's sake, Christian college, do no harm! You are God's representative to the community, so please for His sake, do no harm. But you harm by your diminishing the importance of education for these students.

What would it imply to you, if I said that the education of your child was not important enough to ensure that teacher of your child was doing anything for a whole year that they were in the classroom. But that is what this Christian college is communicating, and get this...they are communicating this so that they can stay in the business of educating teachers of students with severe disabilities!

I personally have had some student teachers that I have really liked as people as friends. However, because I desperately want them to be the best teachers possible, I have tried to move them to a particular, high standard that I have for teachers of students with severe disabilities. I am looked to as the university expert, as their trainer. If I am more interested in pumping out teachers so that my program stays alive than I am that the teachers are of a certain quality, I am doing evil to the students those teachers will teach in the future. So should my mod/sev program die because of the quality standards we aspire to at the little Christian college where I teach, so be it! At least we will walk away from such a program trying to do our best. Are we perfect? Of course not, there are always areas we are trying to improve on all the time. However, we will do our best to ensure the highest level of quality we can because we care about the students with severe disabilities more than we care about their teachers chafing under rigor and going elsewhere. Trust me, if you want to be a teacher of students with moderate to severe disabilities, there are places that you can go that will be easier than our program. If what you want is ease, please do go elsewhere. There are those who have. I know of at least one Christian college in Southern California that is interested in training slackers.

McNair

Marriage

I am probably "late to the party" on this one, however, in recent weeks I have met two couples who have made me aware of a problem and a solution.

I have known Christian couples over the years, couples who were persons with intellectual disabilities who, probably after counseling from case workers and family members, decided to live together as married, although they were an unmarried couple. The state "punishes" people who receive government benefits by reducing their social security payments, among other changes in potential benefits should they marry. However, the state generally doesn't care if two people live together and doesn't care what their relationship is while they are living together. The key issue, I think, is how marriage is defined by the state agencies who control benefits. Well in the case of these two couples, both of them were married in a church, were married before God, however, they did NOT get a state marriage license, and therefore as far as the state is concerned are not married. Their marriage had no effect on their benefits because they were not married as far as the state is concerned. The couple has wedding pictures up in their home, talk about each other as husband and wife, had a ceremony in a church and so on and so on. However, they never received a state marriage license so they are not married as far as the state is concerned.

There are up sides and down sides of this arrangement. Philosophically, I don't care if the government recognizes my marriage as such. I am more concerned that I did what was required regarding marriage, in a church, before God. My marriage license from the State of California means very little to me (I don't think I could produce it if my life depended upon it) even though I have been married 30 years. I don't think that if a marriage license had not been required of me by California it would have mattered to me either. The church wedding was what mattered.

The downsides relate to the things that domestic partnerships protect. Actually, it might be beneficial for Christians to be married in a church and then file for domestic partnerships (just thinking out loud, I really have very little knowledge in this area). I wonder how a domestic partnership arrangement would affect the benefits that persons with disabilities receive from the government? I would not be surprised if those in a domestic partnership have the potential "negative" results of a state marriage diminished.

As marriage grows to be even more convoluted in our society, perhaps the church, perhaps Christians should take a new look at the value of being married before the state, following state regulations. Let the state say that marriage can be between a tree and a fish if they want to, as long as truly Christian churches hold to what marriage actually is (which I recognize is problematic as some "Christian" denominations are morally adrift in terms of representing the teachings of the Bible). If truly Christian churches held the line on marriage, such that a ceremony in a Christian church were the desired standard, then a Christian marriage would mean something. But I suspect the next thing would be for the state to force Christian churches (or Jewish Synagogues, or Muslim Mosques for that matter) to marry people the state said were eligible but that is a different discussion.

Social justice calls us as Christians to make decisions about the things we support or don't support that our government does. If a state marriage license takes two people who are living in poverty, and pushes them deeper into poverty, then perhaps we should not support a state marriage license, even though we absolutely support the importance of a church sanctioned marriage before God. If the state doesn't care whether or not a couple participates in a ceremony together before they live together, or whether they live together as husband and wife, then perhaps in order to benefit those in poverty, we as Christians should not care whether or not a married couple gets a state sanctioned marriage license.

McNair

A few comments on leadership

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

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

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

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

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

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

McNair

The social integration mystery

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

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

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

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

They agreed. But the next question was a shocker for me, but I also understand where it came from. One of the women said,

"Where do we find people with disabilities in the community?"

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

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

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

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

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

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

McNair

Final Serbia report

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

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

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

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

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

McNair

More from Serbia

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

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

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

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

McNair

A report from Serbia

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

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

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

McNair

"You feed them" moments

My friends, Mark, Rick and George are all reading Andy Crouch's Culture Making (2008, IVP) together. In the first section of the book there was a series of comments that I want to string together here regarding the changing of a culture. For my purposes, I am thinking about the Christian church in general, and my church specifically in regards to issues of disability. Crouch writes the following...

So if we seek to change culture, we will have to create something new, something that will persuade our neighbors to set aside some existing set of cultural goods for our new proposal. And note well that there are a number of other possible strategies, none of which, by themselves, will have any effect on culture at all (p. 67).

Later...

Creativity is the only viable source of change (p. 73).

And finally...

So underneath almost every act of culture making we find countless small acts of culture keeping. That is why the good screenwriter has first watched a thousand movies; why the surgeon who pioneers a new technique has first performed a thousand routine surgeries; and why the investor who provides funds to the nest startup has first studied a thousand balance sheets. Cultural creativity requires cultural maturity. Someday my own children will undoubtedly cook me a wonderful meal-but by that time, they will also have learned to lvoe chili. With any luck, they will be both culture keepers and culture makers- both cultivators and creators. And then they will be prepared to both conserve culture at its best and change it for the better by offering the world something new (p. 77).

I think that is what we are actually up to here. We are in the process of creating something truly new for the church that we are hoping they will move toward and use to replace what they are currently doing. It must be something highly creative. But it is built out of a history of experience within the church. It recognizes the things that the church is doing that are working well and celebrates them. However, it also builds the creative new thing as a replacement. Something that once demonstrated, would be embraced as an alternative. In the end, vestiges of the old would remain, however, it is the creative new that most are doing.

I think we see this today in the embracing of various technologies being used within worship services. Yes there are churches who still use hymnbooks. But the creative that people are moving toward is the projection of the lyrics with the video moving behind them.

In the realm of disability, I honestly thing that there is an alternative to the way we do religious education. I am writing about this at the moment. We need to change our terms for even describing what we are up to from religious education to faith development. The implications of the two terms are vastly different. The move to faith development would also move us in the direction of programs that would include people with various disabilities. You see the focus is not "education" in the sense of public school education, but something different (I would say, something better) that would have knowledge delivery as a part of the package but something of which knowledge was only a very small part. Come to think of it, we see that a lot in the way that Jesus develops the disciples. He definitely teaches them things, gives them information, but then he demonstrates things in his interactions with others, and even gives the disciples assignments as a way to grow their faith. Its the, "You feed them" moment. Faith development programs which included people with disabilities would have LOTS of "You feed them" moments both designed to be such, and growing out of the typical activities of live that come from following Jesus.

I am in the process of trying to flesh out what that would actually look like. How would religious education change to be faith development with "You feed them" moments. I actually think that once we get our minds around this notion programatically, it would, to use Crouch's words, be creative, something new that would cause people to put aside some of the existing cultural goods, and both conserve culture and change it for the better.

McNair

Friendship and change

More from Dr. Hans Reinder's book, Receiving the gift of friendship: Profound disability, theological anthropology and ethics.

I wish to confront longstanding convictions in the Christian tradition with the implications of exclusion that have never been properly addressed. To avoid these implications, the church needs to find ways of thinking about being human that do not support the distinction between people with and without disabilities. I believe that friendship is the key to this attempt. Every human being is worthy of being chosen as a friend simply because that is what God does - choose us to be friends (p 162).

Later on the same page and on to page 163,

The struggle for equality and justice begin by the disability-rights movement is important; but in order for it to be truly inclusive, that struggle must be nourished by moral resources beyond the realm of politics...To substantiate these claims I must explain one further aspect of why I consider the disability-rights approach insufficient: "insufficient" here does not mean that beyond "access" there is a further goal, "friendship", that we need to reach for, as if it were the icing on a cake. The point is not that we should move beyond equality and justice, because that would presuppose that we already have realized these goals which is at best only partially true. The goals of equality and justice are not realized within our churches, not even at the minimal level of physical accessibility. Therefore, it is not that we add "friendship" to the list of goods people with disabilities need to have. Friendship is not merely complementary to the goals of equality and justice. Especially regarding intellectually disabled persons, the point is much more critical than that: it is that the disability-rights approach leaves unquestioned what causes the exclusion of these humans in the first place, which is that most people in our moral culture do not want them to be part of their lives...I want Christians to consider friendship with a disabled person as a vocation that, once they have entered into it, will change not only their own lives, but also the life of the church. This goal is clearly different from theologies that argue for equal access. My primary aim - rather than opening up buildings, jobs, or positions - is to change people's mind.

But you see, people don't get this. Last week, for example, I gave an inservice to professionals working in the area of transition from school to adult life. My entire premise was the need for them to develop friendships with adults with disabilities. In human services we focus on jobs and independent living, which are important things to work on. However, as I indicated to the audience, if you asked me what was the most important thing in my life and I said my job or my house, your response would probably be, "How sad." It is relationships which are typically the most important thing in people's lives. Yet as professionals, our efforts relate to other people developing relationships with persons with disabilities (through school inclusion programs, etc.) when our efforts should begin with we ourselves developing relationships once again as both a benefit to ourselves and to those we befriend, and also and example to the community. As Reinders states, it is true Christian or otherwise "that most people in our moral culture do not want them to be part of their lives". People with severe or profound disabilities are not wanted in families, in churches, in the community which may be why many of the programs for them have developed in the manner in which they have

I have complained in this blog about the problems with fingerprinting. But fingerprinting is both a way to protect people with disabilities from being victimized and to protect society from people with disabilities. That may not have been the intention, you might say, and hopefully you are right. However, that has been the effect. There is a societal construction against having persons with disabilies in our lives, and our practices, supposedly designed in support of people with disabilities actually support noninvolvement in their lives. Should I be able to overcome the societal common sense of not getting involved, I then run up against the professional practices which frustrate my desires to befriend.

But as Reinders indicates, friendship is not just the icing on the cake of access. Friendship is the cake. Clearly there will be difficulty in developing friendships without some level of reciprocal access so that access is a starting point. But the promised land is social integration which implies a choice on the part of those we would like to be integrated with each other. Typically because of the isolation of persons with disabilities, the choice therefore, is in the hands of those without disabilities. Perhaps a move in the right direction would be a certain level of the removal of choice.

That has been one of my major desires for the church. The church needs to be confronted by people with disabilities which begins with their presence at church. Let's see what our faith is made of, how we love others by our "works" (See James 2:20). As I have stated elsewhere, the presence of persons with disabilities in the church, including people with severe and profound disabilities, would be a corrective for the church taking us to a place we were meant to be but to date have never been.

McNair

The dream of an advocate

When my son Josh and I go to the movies together, we are always looking for the classic line. It is typically not the lines that Hollywood recognizes, but powerful ideas that jump out at us.

Like from Matrix Reloaded
Lock: "*****, Morpheus! Not everyone believes what you believe!"
Morpheus: "My beliefs do not require them to."

Or from Pulp Fiction
"If my answers scare you Vincent, then perhaps you should cease asking scary questions"

Last week we saw the movie Watchmen. It was just ok, not great. One character who was particularly good, I thought, was a violent superhero named Rorshach. He is responsible for putting many bad guys in jail. At one point in the story, he is placed in jail himself. While he is in the cafeteria, one very large inmate confronts him, threatening him with the fact that he is now in there with the bad guys. He attacks but Rorshach beats him to a pulp. As the other inmates look on, Rorshach threateningly says to the room filled with convicts,

"I'm not stuck in here with you. You're stuck in here with me!"

We agreed that was the line we loved. And that is the way I feel as an advocate who is doing what I can, however small, to change the world around me.

"I'm not stuck in this world with those who would demean and exclude
persons with disabilities. It is my desire to grow as an advocate such that they feel that they are stuck in this world with me and people like me who will not stand for the injustices that are leveled against persons with disabilities."

I don't exaggerate my importance, I am largely unimportant. However, should God choose to use myself and others, I hope to make people, particularly those in the church, uncomfortable with anything short of a truly Biblical perspective on disability. Together, we can give purveyors of injustice, wherever they be, the feeling that the future of their injustice is threatened by our efforts, our ideas, by our very presence. The day I quit my efforts, is the day I am the one who is stuck in a world with them and the things they do and represent.

As long as I continue to fight, they are stuck in a world with ME!

May God make it so.

McNair

Where we are today...not a good place

I received this notice the other day about groups on facebook...

Currently there are over 1000 groups on Facebook whose goal is to mock and demean people with special needs and disabilities.

So I joined the group that is against this practice, but am saddened by what this represents.

Think about this in light of the recent Henry's turkey service incident where men with intellectual disabilities were living in deplorable conditions earning next to nothing in wages. I wonder if the press realizes how common this situation is across the United States. That is, people earning next to nothing and living in substandard places. It was sad that one article related that the bunkhouse where the men were living was so infested with various vermin that it was doubtful that any of their posessions could even be retrieved for them. So sad.

I have personally seen the controlled lives that persons with intellectual disabilities live even in the best of group home settings. I can only imagine how their lives are in bad places.

Then we have also heard this week about the "fight club" at the residence for adults with intellectual disabilities. If you go to this google search page, the story is listed under the heading, "Stuff paintballers might not hate" which is also disturbing. This story is about how staff at a residence were getting the adults to fight one another, apparently for the staff's enjoyment. I suspect the videos of this horrible practice will be surfacing soon, and people with laugh and enjoy them.

One encouraging note, however. When I am able, I like to listen to Dennis Miller on the radio. The other night, a caller made some comment to the effect that a particular politician was a "r****d", a disparaging term used for people with intellectual disabilities. To his credit, Mr. Miller stated something to the effect, "I have friends with mental challenges and they don't like that people use that term like that, so I would request that you wouldn't." To which the next caller used the same terminology probably to Miller's consternation.

We live in difficult times in many ways. We are rabid to kill disabled people before birth. We are moving towards a health rationing system which will potentially cause them to be denied services because they won't score well on a quality of life formula, or because their prospects (their utility to society) will be deemed less than desirable. In the background, those entrusted with their care treat them as slaves or pit bulls in a dog fight, while the politicians lie bold faced to us about their caring.

PAY ATTENTION TO WHAT IS HAPPENING AROUND YOU!!

McNair

Doublespeak

I was chatting with some friends the other day, and they were relating how elated they were that President Obama was elected. Being older and African-American they spoke of the discrimination they had experienced growing up in the south. Anyway in the course of the discussion, I related that I too was pleased that an African-American had made his way to the White House, but that I did not agree with his positions on many issues, in particular, I am very disturbed about his position on abortion. One of my friends said she was unaware of his positions on abortion. I related about how he made promises to Planned Parenthood prior to the election, how he would not vote against partial birth abortion as an Illinois congressman and other aspects of his position. She asked what is partial birth abortion? I actually drew her a picture describing the heinous act. Her husband looked on as I described the procedure. She was shocked. He said casually, "He is pro choice." I was then shocked. The murder that is partial birth abortion is dismissed as simply, "He is pro choice."

I am finding such doublespeak rampant in politics at the moment. It is not that it is anything new for a politician to tell you one thing and do another, but the blatant doublespeak, the blatant lies coming from our politicians are very disturbing. We literally live in a culture where politicians can tell you one thing and do exactly the opposite I assume because they think you and I are stupid. I have a quote from George Orwell at the top of this page that related the sentiment of our time. It says, "“During times of universal deceit, telling the truth becomes a revolutionary act.” Nothing could be truer about today in our country. We are living Orwell's Animal Farm (which I would encourage you to read if you haven't). It is chilling how well it describes our current political climate.

So I would encourage you to think about the language used to describe the activities of people in Washington or state politics. I am confident that they are choosing their words very carefully, often in an effort to spin and decieve. I mean how could I be against someone being able to make choices in their life. I work all the time to help friends with disabilities to have increased choices in their lives. But evil can be disguised by language, and you will be fooled if you are not paying attention.

McNair

Friends with and without disabilities

I gave an inservice to professional working in the area of "transition" this past Wednesday. Transition, in case you don't know, relates to the time period between age 14-16, and age 22 when a student leaves school and begins his "adult life". The focus on this time period in the lives of students with disabilities has been helpful, at times, in planning for their future.

Well, in this inservice I spoke of how the typical 3 outcomes we are looking to facilitate are work, a good place to live and social relationships/satisfaction with ones life. It has long been believed that a critical aspect of social satisfaction is that friendships be developed that are not exclusively with people who are paid to be with an individual with a disability, or are not exclusively with others who also have disabilities. Trust me that this has been an important thrust in a variety of fields. However, in preparing for my inservice, it once again struck me that although we are worried if people with disabilities don't have nondisabled friends, we are not as worried that people without disabilities have friends with disabilities. In my mind it is at least as important and most likely is much more important in the life of the person who is not disabled to have friends who are disabled. Why might I say that?

For myself, I think my friends with disabilities (mostly people with intellectual disabilities) stretch me socially, make me more acceptiong. As I have come to learn, they make me more like themselves in this way. I am hopefully growing to be accepting of others in the ways that they are accepting of others. These types of friendships although they can be demanding bless ME in myriad ways.

However, it is funny because society tends to think that if we befriend a person with a disability we are doing them a favor. I guess befriending anyone is doing them a favor, but we are especially helping if we befriend a person with a disability. Now I agree that people with disabilities need friends who are not disabled, but I do not agree that I am the only one who is giving in a friendship. They are never the only ones who are benefitting in a relationship. I think that is one of saddest misconceptions about people with intellectual disabilities: the nondisabled always do for them they do nothing for those who are not disabled. Nothing could be further from the truth, however, you need to be paying attention. Yes I am the one who is buying the ice cream, or the Starbucks and I am the one who is driving the car and so forth. But there is an aspect of this where I am doing, while they are being. That is something that I could really unpack but it needs a lot more thought. But I will say that if I have limited resources to do for someone, I tend to think I have nothing to offer because I can't do. How can I benefit others by my being in the same manner that my friends with intellectual disabilities benefit me by their being? That is a lesson I need to learn. It is a difficult lesson because I am so focussed in my life on being this and doing this. It isn't that my friends have made the decision not to be like me. It has to do with the "cards they have been dealt". I have the ability to reflect on this difference to try to understand it.

McNair

Learning from my friends

This past week we celebrated the 16 year of our Light and Power group at my church. Kathi and I started the group way back then and have learned a great deal over the years. As I was reflecting on that very idea, what I had learned, the thing that jumps out at me is the perspective that adults with intellectual disabilities have about themselves and about others. It is a perspective that I am still trying to learn...or perhaps would be a process of unlearning much of what I currently know about ideas of intellectual disability.

You see, 1) my friends largely do not see themselves as disabled and 2) they don't see me as different from them in any significant way.

I, on the contrary, 1) see them as disabled and 2) see myself as different. I have good reason for my perceptions, however, because on the basis of all the assessments I have been taught to value, I score higher than they do. So obviously that implies that we are different in characteristics that are very important.

My friends are happy with their lives, but I see them as disabled.
My friends do not see themselves as disabled, but I see them as disabled.
My friends do not see any difference between they and I, but I see them as disabled.

The biggest lesson I am learning, is not to judge others, from the others who I and other professionals are constantly judging. Rather than just seeing people as people, I evaluate them and see them as disabled. I have been trained well both professionally and by my society. But I am increasingly evaluating the notions which are entrenched in my thinking and finding that perspective is not only wrong morally, it is wrong logically. No benefit is provided that I can really see by many of the labels provided. They are provided such that menus of services can be made accessible. I have to have a particular label in order to receive a particular service. Perhaps this makes sense for agencies. But why would such a professional perspective find its way into my personal life? Why would such a perspective find its way into the church? Is there really any benefit in me convincing myself and those with intellectual disabilities that we differ from each other? Because I am the one with the higher score on the test used to make the differentiation, perhaps I might be more apt to embrace the assessment. But my friends with intellectual disabilities teach me with their lives that those assessments are in many ways foolish and do not reflect reality.
McNair

Be compassionate, don't evacuate

In my entry of 11/18/08, I spoke about the earthquake drill here in Southern California, and the problematic response I observed at one high school.

My friend Michael Hoggatt, makes a similar observation in his blog entry today regarding a situation in Texas. Check it out at http://manger-hoggblog.blogspot.com/2009/02/disasters-drill-in-buda-texas.html

McNair

Adults as children

A friend of mine, recently sent me a link to his weblog. As I read it, I was impressed by his premise that adults with disabilities are really children because of their supposed "mental age" functioning. I have no idea why anyone would embrace the notion of mental age. I would be happy to go toe to toe with any psychologist over the issue. As an educator, it tells me nothing, absolutely nothing about a person. Well I take that back. It tells me that the person who uses mental age is very comfortable in using a way of describing people that demeans them. I have seen many mean things done in the name of mental age. And as I say, if you are told that I have a mental age of a 12 year old (I do in a lot of ways, and may I never change) what does that tell you about me? Does it tell you that I didn't really progress past 6 grade in terms of my understanding of mathematics? Does it tell you that I am a fun loving person with the heart of a child? Does it tell you that I am still going through puberty? I mean it is really not helpful. Then if you tell me that I have the mental age of a 3 year old, well, I just don't know what that means.

I recall when I was working in an intermediate care facility in the 1970's. It was at the time of deinstitutionalization. I had developed a friendship with a senior woman who liked to watch "The Guiding Light" every day. Some days I would watch with her. Because I was responsible for carrying out occupational therapy services designed by an OT, I had access to her chart. It indicated that her IQ was 27. I don't know what mental age that would translate to, but this was a woman whom I would discuss a soap opera with..."do you think Sarah's child is from Bob?" It is just not helpful. If you want a graphic example of this, view the Marc Gold video I have a link to in this blogsite.

But in my research meeting that I had the other day, I saw it again. We are to treat persons with intellectual disabilities as children. My response to that is that those people do not know people with intellectual disabilities. They let their socially constructed notions of who they are determine their actions towards them rather than attempt to find out the truth. It was fascinating, although discouraging, to me that the social constructions I was proposing to research were actually being acted out in front of me by those who were evaluating the research. Of course they were clueless to this fact and only saw themselves protecting my subjects.

Personally, I am constantly on the look out for those wrong notions of who disabled people are in myself. I really bugs me when I find one and wonder how I allowed that to exist in my psyche. People think they are protecting when in reality they are contributing to further wounding of devalued people. Revisit Wolfensberger's wounds in this blogsite. Ask God to help you see how you contribute to the wounding of others. It doesn't matter too much either whether or not you are well intentioned. I need to evaluate my best intentions in the light of what is true and if my intentions take me to a place where people are devalued, then I need to have the intellectual honesty to grow up and quit saying "I didn't mean it". If you keep doing something when there is the possibility that you can change through knowledge but you resist knowledge, then independent of your intentions, you should be blamed.

Adults with intellectual disabilities are adults.

If YOU treat them like children, YOU are wrong.

If you treat them like adults, they will rise to your expectations and drive you to repentence for the contribution you made to their wounding.

McNair

Gandhi on the fight

My daughter, Amy, sent me this great quote from Mahatma Gandhi.

First they ignore you, then they ridicule you, then they fight you, then you win.

This has been my experience a bit in the work in disability ministry. We had been ignored for a long time. I have been told that disability ministry is not a priority, in other words, go away we want to ignore you. I have been told that I am wasting my time. I have heard from many others that church leaders have told them the same kinds of things.

I am happy to say that I haven't heard the ridicule from the church. I think in their heart of hearts them know that people with disabilities should be present in the church. So although they may resist what they know is right because they are afraid or don't know what to do are lazy or even negative in their attitudes, they have not engaged in ridicule.

But they do fight you. Have you ever heard these kinds of comments?
We have never done it that way.
The Sunday School class meets on the second floor and we don't have an elevator.
We got to keep the homeless man out of the bushes.
The girl with down's syndrome disrupts the junior high Bible study.
We need to get rid of the mentally ill woman.
Sunday School teachers won't teach if the boy with autism is in the class.
We will have to change ...
Why should people with disabilities be a priority for ministry? (one of the worst I ever heard)
It will be too expensive.
I don't have any training.
They are a black hole for service.
They will drive others away.
They are too disruptive.
and so on and so on.

But if you believe Gandhi, if you persist, in the end...YOU WIN!

I think I am beginning to feel the change in momentum towards our side. It's like a football game where one team is ahead, but things happen that tell you that the other side is coming back. In reality, in the church we are all on the same side, although some don't know it yet. But there are many things happening. I can tell you that there is just an increasing interest in issues of spirituality and disability, and again it is finding its way into the church. At times Christians are leading the way in this momentum change and that is exciting. But we can't be self congratulatory yet...if ever.

Not too long ago, I was picking up a friend who works at a sheltered workshop in my town. He was going to be a guest speaker in one of my classes. Anyway, as I waited for him, perhaps a hundred adults with intellectual disabilities exited the building. There were faces I recognized and people I greeted, but I bet I knew 15% of the people at best. I hope others in that group have their own places to worship, but I can't help thinking they don't. Multiply that by the number of communities, take in those who are in supported employment settings or adult day care. What about the thousands of group homes that exist in our communities? If a church has 3 or 4 adults with intellectual disabilities in their congregation, that is great. But there are many more of these folks in the community.

May God open our eyes to needy people in our community. May God draw us to them and them to us. May God receive the glory when we are obedient in loving our neighbor.

McNair

Shock and dismay at insensitivity

Well, I am in the process of finishing up some research I have been doing about social constructions of disability.  I surveyed church leaders, then I surveyed church attenders (both articles published in the Journal of Religion, Disability and Health).  The final study I wanted to do (and will do, I might add) is a survey of adults with intellectual disabilities.  I am asking them questions about a variety of social constructions such as whether they are angels, or heroes, or if they have a good quality of life.  However, while having my survey reviewed, the process came to a screaming halt over a question deemed insensitive and inappropriate.  What might that insensitive question be?  The question that I plan to ask adults with intellectual disabilities is...

Do you think mothers should abort babies with disabilities?

The reason why this is insensitive?  I might cause them mental distress, or they might cry, among others.  Another raised the issue of a research literature on this question.  Do you really think that secular academia is in any way interested in the answer of disabled adults to this question?  Do you really think it has been asked dozens of times before?

I related that statistics indicate that 90% of mothers who are prenatally diagnosed as carrying a child with down's syndrome abort, which was greeted with disbelief..."That can't be true"!  I could have gone into neural tube defects, and the looming dangers growing out of the human genome project.  The threat is true, and as Wolfensberger describes, we are in the midst of a new genocide.  But if your group is being systematically identified for death and then are killed, it is insensitive of me to ask whether you think that is wrong because that might upset you. I hope it upsets you, and I hope your voice of being upset will be heard so that it will stop!  And stop NOW!

But people don't get it.  They think adults are children.  They think they don't care about such issues.  I feel like the chauvinistic man who pats the woman on the cheek and says "Don't you worry your pretty little head about these man issues."  Disabled person, they want me to pat you on the head while people who are like you are being exterminated.  They want me to tell you, "Don't you worry your poor, little head about the countless innocents who are murdered because of social constructions."  But I won't do it.  What I will do although it is in a very very small way, is I will try to dispel the myths that support those horrible acts and do what I can to give you a voice, however small, however insignificant that voice may be.  I don't know how those with intellectual disabilities will respond to such a question, but they will have the opportunity to respond.

My friends with intellectual disabilities, may God give me the ability to give you voice, though it be a whisper, and if it upsets you and makes you cry, that just proves that you are a normal human being because there are many of us who are upset, and cry with you.

McNair

A change in the family

I have a friend who has a physical disability. He developed the disability later in his life as the result of a traumatic brain injury and I never knew him as someone without a physical disability. We have lots of discussions about a variety of issues, however, last night, both as we sat together over a cup of coffee, and earlier when he addressed a class of mine, on several occasions he talked about how he has been feeling recently like his mind is clearing. He said one of the major results of his mind clearing is the realization as he says that, "I am not stupid!"

He talks about how his family has changed as a result of his becoming disabled. In his case, he feels the change is for the negative, like perceptions that people might have had about him for a long time are now coming to the surface evidenced in their treatment of him. I think he feels that his care, his need for various kinds of supports have brought the negative feelings out. His reply to his family is expressed in his pronouncements to me and last night's students. "I am not stupid!"

Clearly, he is not stupid. But I wonder about that, particularly in the case of someone who becomes disabled later in life. To those to whom you might have been less than kind, it is like the chickens come home to roost. But even to those with whom you have the best of relationships, it can become difficult. We are not prepared for the demands of a disabled family member, especially if we have fallen into the ruts of a comfortable family routine. I have to subjugate my desires to my family member's care and that is difficult at best. I can't imagine someone having to take care of me, for example. I am 6'7" and weigh every bit of 250. How would you like to have to move me around? And as nice of a guy as I might want to be, it will still be very difficult.

My friend sees himself as just a person which by the way is what he is. But he gets frustrated with the treatment he receives from his family and those in the community. He has come to grips in many ways with his disability, his limitations. What he has not come to grip with as of yet is the way people treat him as a result of his limitations. He feels he is being treated in ways that should have nothing to do with his disability. As he has grown into his disability (so to speak) many components of it are absolutely irrelevant, however, some of those same components are used by to society to define him, at times, as stupid and that is really frustrating.

McNair

Fingerprinting...again

As I have discussed elsewhere in this blog, I try to spend an hour or so, once a week at a local group home for adults with intellectual disabilities. It is a good home. I sit there with the 5 folks who live there, over a coke and an ice cream cone. At other times, I involve them in church activities, or occasionally take some of them to lecture in my classes. It is amazing how these people have changed the lives of new teachers. Anyway, a while back, I completed the fingerprinting at the local police station, and turned it in to the home operators. Somehow, it was not what was needed. I can only assume that the police department doesn't know to do fingerprinting or something (of course I am not serious) but it was insufficient for those who monitor the group home. So I went again today and was fingerprinted again. Just FYI, it was $77 today and I think it was over $60 the last time I had it done.

As I was chatting with the nice gal who was taking my prints, I told her that I was a volunteer at a group home for adults. She considered the categories on her form for the purposes of charging me.

"There is not a space on the Department of Justice forms for people who want to volunteer with adults in a group home or a senior citizen center for that matter" she said. "If you were working with children, there is a price for volunteers" (I think it was 35$) "but not for adults. Are you going to be employed by the group home?"

I had actually offered to the group home the idea of paying me $1 a month or something, so I wouldn't and they wouldn't have to go through the continuing hassle of dealing with those in social services who were harassing them. But I cannot tell you how angry it would make me that I have to be paid in order to be a person who interacts with adults with intellectual disabilities as a friend. Clearly $1 a month would not change my motivation in wanting to just visit friends, and provide them various opportunities to enrich their lives, but it really bugs me that it would make me just one more person on salary in their lives. The regulations built to "protect" them are actually killing them socially. Who would want to go through the hassle of getting fingerprinted numerous times just to befriend a person with a disability? I mean it is not like people are lining up to befriend group home residents, people who are truly worthy of friendship, but I guess that is how social services in America likes it. "Leave it to the professionals!"

Well we left it to the professionals, and the result was overcrowded, brutal institutions populated by innocents living wasted lives...but it was sure convenient for all involved. To once again quote Burton Blatt,

To live with our retarded children, our handicapped friends, our aging parents does place burdens on all of us, but what we must learn from the nightmare of institutionalization is that these burdens cannot be avoided or delegated, for to have a decent society we must first behave as decent individuals. Ultimately our society will discover that it is easier to meet the responsibilities to our fellow man than it is to avoid them. (A return to purgatory, From In and out of mental retardation, 1981, p. 268)

Unfortunately human services, instead of lessening the burden contributes to it. I can understand why someone with a heart to help would throw up their hands and say "I give up!" We in human services really don't want you to interfere in our plans (be they IEP's or whatever) because you will make things difficult for us, and we would prefer to avoid our responsibilities, particularly when they are messy. It is all about therapeutic power that makes decisions on the basis of administrative convenience.

McNair
(fcbu)

Making new friends at the Joni and Friends, "Through the roof" conference, 2009 (post # 400!)

Last weekend, Kathi and I attended the Joni and Friends, "Through the roof" conference in Pasadena, CA. As usual, the conference was wonderful. There were probably about 200 people in attendance. But these are not just "people." These are folks who all have a heart for people with disabilities and disability ministry, so it is a rarified group.

Keynote speakers were great. Joni was wonderful as was the President of JAF, Doug Mazza. Kathi and I each did a break out session in the new NACSPED (National Assn. of Christians in Special Ed.) track which I think were well received. I also had the chance to lead a discussion group of special educators that was fun and informative.

But for me, one of the real highlights of the conference, was meeting Arlyn and Will Kantz. These folks are involved in two very innovative projects.

The first is Bethel Fellowship Church. It is a church being designed from the bottom up to be inclusive of people with autism. The ideas behind its design are very innovative much of them based upon their experiences with their own son with autism. Bethel Fellowship is an "experiment" that the Christian church should be watching. Arlyn blogs about their thoughts at http://bethelfellowship.blogspot.com It is truly exciting what they are up to.

The second is a curriculum for teaching language among other things that is called Precision Songs. The website is, http://precisionsongs.com The curriculum revolves around teaching children simple songs that they learn to sing. Then, critical words and phrases are removed such that they continue to sing, however, the person singing on the CD does not sing those portions. Ultimately, the person on the CD just states questions and the children just respond with an answer. It is very clever. From the little I have seen of the curriculum, I would recommend it. I hope to actually do some research on the curriculum with autistic children in the future. I will let you all know what I find.

But God bless the Arlyn and Will. God is using them. Follow the development of the church and their lessons learned at their weblog, and give the curriculum a try!

McNair