Providing what is needed

I heard a story recently about an interaction a man had with his son.  His son experienced many disabilities including autism and epilepsy.  One day as they were driving together, the son who is quite bright said to his father,

"I wish you could understand what is going on inside of me, inside of my head."
The father's interest was piqued.  "Can you try to explain to me what it is you are thinking about?  What is going on inside of you?"
The son replied, "You treat me as if I have a behavior problem, but what I have is mental illness."
The fathers eyes were opened and his relationship with his son changed dramatically.

There is a difference in how we interact with people when our expectations are in line with their abilities.  You have the right to expect me to act in a particular manner, because my thinking is not impaired by mental illness.  However, if I am experiencing mental illness, now your expectations will radically change.  You recognize that there are things I can be expected to do, to understand, ways in which I will change, and many other ways in which I cannot change even though it might be my desire to do so.  The result is that although you still have expectations for me, you will have to change your expectations of me.  You can try to punish me in an effort to change me, and perhaps some kind of change might come from that, however, you aren't going to eliminate my mental illness, and will probably only exacerbate it through punishment.  Your punishment will seem to me to be irrational and random.

Too often people who either do not have a child with a disability, do not experience disability themselves, or through their choices have no friends who experience disability.  But will then act as if they can speak into the lives of those who do have those experiences, as if they know something.  Well they shouldn't because they don't. 

If you want to speak into the life of a family of a child with a disability, here are some things you might say.

Is there anything I can do to help you?
I would love to keep an eye on your child for you sometime.
Is your family available for dinner sometime?
We are having some families over for a big Christmas party and would love to have you bring your family!

Begin by choosing an individual or family as friends.  You will then learn what you might do to assist and it will probably be something simple, but different from what you had expected.

McNair

Weird glasses people

About 5 years ago, I wrote a blog entry that demonstrated an interaction between a person who wears glasses and one who does not, illustrating the manner in which people exeriencing disabilities are often treated. http://disabledchristianity.blogspot.com/2008/01/conversation-with-man-with-glasses.html

A friend from Australia, Lindsay Gale, who works for the Luke 14 project there, told me how they had been using the dialogue in a skit format.  But imagine my surprise to find the skit had been made into a short video!  Check it out.  It is a lot of fun and they really do a wonderful job!

http://www.youtube.com/watch?v=PpuDiRvgYMU

McNair

Toby's "commercial"

A friend of mine made this "commercial". 
Please take a minute and check it out.
http://www.youtube.com/watch?v=CRigofKAeZU&feature=feedu

McNair

Form follows function

According to wikipedia, the phrase "form follows function" originates from Louis Sullivan in 1896.

The idea was presented in a quote that says,
It is the pervading law of all things organic and inorganic. 
Of all things physical and metaphysical. 
Of all things human and all things super-human,
Of all true manifestations of the head,
Of the heart, of the soul,
That the life is recignizable in its expression,
That aform ever follows function.
This is the law.

The friend who shared this with me was considering this idea in the light of accessible architecture.  So the form of say, a ramp, follows the function of allowing access to a structure for people who use wheelchairs.  If their is not a ramp, it implies that the function of the building either did or does not include the presence of persons who use wheelchairs, because the form would not allow their presence.

As the quote indicates, however, form and function transcend notions of architecture.  Forms that we see in policy, in program, in social structures, in many ways reflect the function of those.  We can see that people are not accepted, for example, in some social settings, perhaps on some level at least because the forms of those settings were developed with out people having a particular characteristic present.  If people try to be a part of that setting, all will find difficulty because the forms expressed were designed without individuals having that particular characteristic comprising the function, functioning within that environment.

When there are changes in the function, say indivuals with disabilities are present, the form must change: be it the form of social gathering, the form of human interaction, etc.  Dissonance within a social setting can be reflective of the need for a change in form or function.

There is a lesson here for the church.  If there is difficulty integrating individuals with disabilities within the church, it is likely a problem of the form that resulted from the perceived function.  The forms of the church were designed or developed with a different function, i.e. not including people with disabilities.  As the function changes where people with disabilities are now present, the form will also need to change to some degree, if only in the physical structures (ramps, hearing devices, sign language interpreters).

Likely when there is less difficulty with integrating people with disabilities, forms have changed reflecting changed function.

McNair

So what do you do?

I am reading Desmond Tutu's book No Future without Forgiveness, It is an amazing discussion of the Truth and Reconciliation Commission which he directed as apartheid was dismantled.  Perhaps I will share some of the deep lessons about forgiveness in a later post, relating them to disability issues.  The excellent book has resurrected many memories of a trip I took to South Africa about 5 years ago.  Thought I would post a poem I wrote back then as I tried to understand what I observed there.

So what do you do?
A reflection on South Africa

by Jeff McNair
So what do you do with the things that you see?
When natural beauty cannot hide the disparity. False Bay is aptly named.
And the love in their voices cannot mask an African’s plight:
the poor are the Black and the rich are the White.

So what do you do when people beg just for food?
In the shadow of cities and wealth so lewd
that embarrassed, you hide your affluence: not a motive of greed,
but a pleading desire to lie that “I am...I would be different.”

So what do you do when you give a beggar 10 rand ($1.65) and he breaks down weeping?
In worried humility, he creeping up to ask the time.
Such generosity reduces a man, crumbles him in tears.
We stand aghast, in wonder, as a beggar becomes a human and then becomes dear.

So what do you do as you take in the sights
knowing the person who drives you has never seen them?
He genially works nights for a living so basic, that you cannot believe
his friendliness is little more than an attempt to deceive.

So what do you do when driving a cab is a better life?
Thousands of miles from Dakar to Cape Town to drive a cab
is described, with a grateful, straight face, as a better life.
He pulls on the emergency brake, to stop at a light. “Mother is proud of me!”

So what do you do when Blacks and Coloreds and Whites are taught to say
“We’re all the same”?
While a “you know who” stands on each corner to guard those with wealth
as they scurry in safety by protectors on substandard wage,
who must see there’s no sameness from their economic cage.

So what do you do when you look in the eyes of a poor humanitarian?
Serving one’s people fuels the lifeblood that courses through proud veins.
“Will you be my partner?” the saint asks the rich man with averted eyes,
neither the rich nor the saint comprehending their respective guise.

So what do you do when leaders that Mandella’s wise plan brought to power
are kings of corruption?
Who in spite of their efforts cannot out sin, as the Whites’ “moral” replacement:
unquenchable greed and power murderous racism’s alternative.

So what do you do when the labor’s so cheap
that someone stands all day to keep you from pushing the elevator button?
With a kind word and friendly smile
protecting his job from the next in line.

So what do you do when you are back in the states
trying not to shake the memory of difference that grates
on your awakened, helpless sensibilities and uneasy ambiguity
destined to be gradually forgotten
in a file of pictures from a trip sometime back?

So tell me a story of a man and a people
who fought and gained freedom
from racism taken to the ridiculous extremes
of the color of bread.

Tell me they now live in a place just, as equals.
Because the story I heard, is perhaps better a sequel
where racism holds on by a rope not a thread
and has feigned its demise but is not as yet dead.

Prove to me that “We are all the same” by your lives,
as I am unconvinced by your blessed words.

Opportunities and realities

Opportunities abound for the possibility of doing good. The question is will we see those opportunities, or be distracted by some comparative trivia, some historical reason for resisting change? The "we have always done it this way" as foolish as it sounds remains a powerful argument. We resist change because change moves us out of our current positions of comfort, or prestige, or simple thought processes. "If people with disabilities are suddenly worth my effort, what does that say about my lack of caring in the past?" Well, it says you were uncaring IN THE PAST. The real question is, will you be uncaring IN THE FUTURE?

But courage is needed and I don't mean to demean that courage. Take my favorite movie, for instance (although it is a bad comparison). The reason I love the movie Babe, is not because there are singing pigs and crazy ducks. It is the story of a man, Farmer Hoggett (I think), who saw something that no one else saw. A pig who could herd sheep. He then had the courage to enter the pig in a herding contest, to the laughter and demeaning of the crowd. At the end, the deriders are speechless as they finally see what he had seen. But it takes real courage to act on something that you see, when you know that most others don't see it. If the pig had not herded the sheep before the crowd, the farmer still would have been right, he just would have lost that particular opportunity to convince the crowd of what he had seen, of what he knew. He would have been ridiculed, but he would have been right.

We are facing those kinds of opportunities today. We see something that I am hopeful we can help others to see. If we fail, that does not mean that our vision of a church that includes persons with disabilities is not a glimpse of reality. It means that we were simply unable to convince those who need to be convinced of the opportunities that lie before them, before us. I must also realize that I must be subservient to my Master, the Lord, who might be saying that the timing is not his timing. I must submit my will to his.

McNair

St. Giles Church 9/10/06

I just discovered this post I had written on a trip to Scotland in 2006.  Never posted, I thought I would post it now.

I just got back from a wonderful conference in Aberdeen Scotland. While there, I sat in a church in Edinburgh called St. Giles Church and listened as a classical music group prepared for a concert later that night. I wrote the following as I sat there

In a reformation kind of way, I hope to open the church. Or perhaps, it is a total change. I want it to change its priorities, to change its practices to become something it has never entirely been before. It may be that the doors are open. But that only means that like a museum it has visiting hours. You sit in a church but you might as well be like an informaiton center about cultural silliness (as in the Tron center there in Edinburgh which was once a beautiful church and now is the shell of a beautiful church filled with a combination of a partially excavated floor and silly things about witches, etc.). But it does begin with openness, with business hours. Particularly business hours that don't exclude. But people can be those visiting a museum or those engaged. People who look around and tke picutres and leave, or people are aware of what a church actually is, how it differs from a museum. How congregational members differ from museum attendees or visitors. I don't concern myself with who or is not in the museum. Of course, I would like everyone to have the opportunity to enter.

My desire, however, with a church is to think about who is or isn't in attendance and wonder why. How is their presence or not a reflection of me, of us? Churches may move from churches to museums to buildings housing silliness very quickly (comparatively) and the reasons for this change can be knowable. In summary, it is linked to obedience. How interesting that so many churches here in Edinburgh are museums or restaurants or bars. One even houses a tall rock climbing wall. It is a city dedicated to the culture they have abandoned.

So I go into Tron square church to see what is in the dirt that the church stands on. If I look up, the stained glass reminds me of worship. I got to the church below Edinburgh Castle and eat at the "Carvary." How funny that Kathi misread it as "Calvary." How many of the population would have the vestiges of culture to catch the "joke."

May God continue to move us forward as a growing church.  The churches of Edinburgh are like the stumps of dead trees.  A remembrance of what might have been, what had begun, what had life but is now a dead, distant memory.

McNair

"Treat all people the same"

Imagine that was our creedo for the church. "We treat all people the same" but there are no women are in church. Would that be treating all people the same? Obviously not. So if we say we are treating everyone the same but certain groups are not present, that is probably a very good indication that we are NOT treating all people the same. How might it look if we were treating all people the same? Well, in many ways it would not look like it currently does simply because, in the case of people with various disabilities, they would be present in numbers reflecting the community. That they are not present indicates to me that we do not treat people the same. I also don't care if your church is largely comprised of white people, hispanic people, african people, asian people, it doesn't matter as most all of those groups of people are not treating people with disabilities the same as they would want to be treated within their own group or by other groups.

McNair

"Don't believe everything you think!"

One of my students, Jayson, in responding to a reading I had the class do, came up with this great statement... 

Don't believe everything you think!

It is such a great caution about living an unexamined life.  There are many things that we think and do that we really don't understand.  We have ideas about people or things that somehow are just a part of who we are and when we are in situations that call us to pull out that information, we do so without a lot of thought.  When we are challenged to consider our ideas, it can be painful because we find out how wrong or uninformed our ideas may be.

As an undergrad at Wheaton College, I was a TA in a class called Christ and Culture.  The major focus of the class for incoming freshmen was to challenge everything they believed about their Christian faith.  They often misunderstood thinking we were actually challenging their faith.  There was a lot of crying and questions like, "Why are you doing this?"  But the point was to make their faith THEIR faith.  They had been told things by their parents or others in their lives, but they hadn't investigated them for themselves.  "Why do you believe what you do?"  "Because my mom told me." May be a true response, but isn't necessarily a good response, particularly when you are confronted by the challenges of the world.  If you have come to an understanding of something because you have thought it through, that is much different from simply, lazily relying on something someone told you even if it was your mother.

I remember I once had a job at an industrial laundry in Atlantic City, NJ.  My boss was a great guy who was a Jehovah's Witness.  He challenged me as a young man on many positions of the Christian faith that differed from the Jehovah Witness faith.  "Why do you believe in the trinity?" he would ask.  "Why do you say Jesus is God?" both postions that he as a JW would not support.  I quickly realized that I had not done the required work to understand why I believed those things, and when challenged to find them in the Bible, as a young man, I couldn't do it.  I was simply relying on what I had been told.  Since then, I can easily support those positions from scripture, but it was my JW friend who challenged me to support my beliefs even though he didn't agree with them.

Social constructions of disability are the same kinds of ideas that people have that they have really not examined.  So, of course everybody with a disability thinks thus and so.  Of course they are all unhappy with their lives and so on and so on.  As a mentor professor once said to me about a conference speaker he had heard, "Unencumbered by knowledge, he speaks with great authority!"  That is the unexamined world of ideas that we carry around with us.

Now no one would (or should) come up to me and ask about economics.  However, I carry ideas about economics around in my head that I have heard or read somewhere that come out of my mouth every so often.  I can tell you that they are unexamined ideas.  They are largely unexamined because I have never taken the time (nor do I want to take the time) to understand more about economics.  I try real hard not to infuse my ideas about economics into conversations I am in if only because I would do little more than make myself look stupid if I were to offer my perspective.  However, in the world of disability, because it intersects with the life of so many different people in so many different ways, knowledge doesn't always accompany ideas.  I see it in "Christian" responses to people with disabilities, I see it in justifications for abortion or euthanasia, I see it in people projecting their ideas of what it would be like to have an impairment on others, I see it in the development of laws, I even see it in the definition some hold of what disability is.

So my caution is Jayson's caution..."Don't believe everything you think!"

McNair

Chickens and data based instruction

Something I wrote about 10 years back about data collection.  You can visit the actual website where it lives, if you want.  There is other information there about being data based as a teacher.
http://www.jeffmcnair.com/CalBaptist/CBUTransition/Transition/new_page_4.htm

There are several reasons why a teacher should take data on her students. Interestingly, they all seem to follow a chicken feeding model. Don’t ask why, just read on.
Instruction in a general education setting is pretty much a chicken feed model. That is, the food is tossed out to the chickens, and they eat it. In a general education setting, most often instruction is made to the group. Assistance is provided to individuals to some extent, however, simply due to the sheer numbers of students, individualized instruction is at a minimum.
Such is not the case with Special Education. The instruction in Special education is supposed to be individualized. Some chickens, for whatever reason, cannot feed themselves. As a result, you walk into the coop and see some very fat chickens, those who are thriving in that setting, and those who are sickly and scrawny. The idea behind individualized instruction is to work directly with those who become sick and scrawny under the traditional model of chicken feeding so that they too can put on a little weight.
The first reason for taking data then, is to monitor the progress of students who have had difficulty in the past in order to ensure that they are improving. Imagine that you are responsible for a group of about 25 chickens. You might consider yourself an entry level "chicken service worker." The director of the chicken coop comes by one day and you have the following conversation . . .


"Hello chicken service worker number one. How are the chickens doing?"
"They are doing great" you respond.
"Really?"
"Yeah, they are much better than they used to be. You should have seen them when I first got them!"
"Are they eating better?"
"Yeah, I feel like they are much better then they were."
"Why is that one chicken sleeping with his feet sticking straight up and his tongue hanging out?"
"I don’t know. He does that all the time. But he has made friends with a family of flies."
" . . .and several others seem awfully skinny. I have never seen chickens sit down for so long."
"You know, when they first came here, they used to run around like crazy. Now they sit like good little chickens."
"Prior to visiting your coop, I didn’t know chickens could sit. I’m not sure they are supposed to sit."
"They do in here."
"How much food have the scrawny ones been eating?"
"Oh, a lot."
"Have they been gaining any weight?"
"Yeah, I feel like they have been gaining quite a bit of weight."
"I think that chicken with the friends is dead."
"Really?"
"Those other skinny ones, they don’t look like they are getting enough to eat. Have you been keeping track of how much they eat?"
Pointing to his head, "I keep it all up here."
"You keep the weights of twenty-five chickens as well as their daily intake of food in your head? That's a lot of information. . . I can’t believe you are able to do that."
Yet as unbelievable as it sounds, there are teachers who have starving students, educationally, in their classrooms. Students are educationally dead, in their classrooms and they don’t know it because they are not collecting any data. They are using educational approaches which are not working and they are unaware.

A second reason for taking data, is to evaluate our own teaching. Just because a teacher is teaching doesn’t mean a student is learning. It is the teacher’s job to ensure that the student is learning. Very often, the reason that students do not learn is not because they are unable to learn. Rather, it is because we as teachers are unable to teach, or refuse to teach using best practices.


"Those chickens are really, I mean REALLY scrawny!"
"I feed them every day!"
"Are they eating it?"
Pause, "I feed them every day. I even use SCRAWNEX, a special feed for scrawny chickens. Like the add says, ‘scrawny today, chubby tomorrow’"
"Is is working?"
"We had a coop inservice which said that it is the best food for scrawny chickens."
" . . . and why are those straws sticking out of the water bowls."
"I thought I’d try something new. I covered up the water, except for the straws."
"Are the chickens getting enough water?"
"They sure peck at the straws a lot!"
". . . and you thought this was a good idea?"
"Do chickens have lips?"


Many teachers have no idea whether the approach they are using is working, for any or all of their students. Yet, they blindly continue on with what they are doing.

The systematic taking of data also ensures that students are given instruction relative to a specific objective every day, or as often as the objective or program demands. Back to the chickens . . .


"You know when you took this job, the idea was to keep the chickens healthy."
"I think I have tried to do that."
"The feeding objective assumes you will feed and water the chickens every day. Have you given them food and water every day."
"Well, there are other things I needed to work on which weren’t in the objectives."
"So what are you telling me? Please don’t tell me that little Winger is so skinny because you haven’t been feeding her every day."
"She got food. Nearly every day she got food, and water too, I think."
"You know, if you had been taking data, you would not only know whether or not she had been fed every day, the recording of the data point would have ensured that you feed her every day."


A final reason is to be able to document for others the progress students are making. Imagine the same conversation above, however, the chicken service worker has been taking data on her chickens.


"So, how are the chickens doing?"
"Pretty good. Did you know we went through five different types of food last season?"
"Really?"
"Yeah. I finally found one that Beaky could eat. She has gone from two to three pounds in the last two months."
"What about that chicken who is sleeping over there?"
"He might not be sleeping, I think he might be dead. I have tried the five different types of feed, and have delivered each of them using three different feeding techniques. But still, he won’t eat and hasn’t gained any weight."
"Did you give them enough time to work?"
"I can show you the graphs if you’d like."
"Well, I’m sorry to say that we can’t save all of them. But at least you have done your best. I may need to show your graphs to the coop director if he really is dead."


How many times has the discussion at an IEP meeting revolved around the changing of objectives which haven’t been met, and there is no mention of data. Teachers should be responsible for sharing the data which would minimally indicate the various approaches which have been tried, how long the approach was tried, the results of the attempts, as well as anecdotal notes which would indicate the next steps which should be taken or the next approaches to be tried. Unfortunately, it is suspected that the sharing of this level of information at an IEP meeting is the exception rather than the rule.

Why take data? As professionals in special education could we do any less?

Teachers who do not take data, should be guilty of malpractice not common practice.

Data collection as a human rights issue

Probably no one would argue that children having access to an education is a basic human rights issue.  However, I am wondering at what point the way in which that education is provided also becomes a human rights issue.  If the "education" either does not actually educate a child but instead simply babysits that child, is it still and education or is it now a denial of basic rights by deliberately wasting the child's time, by saying that the child is not worthy or not able to benefit from an education?  In addition, if specific training techniques are known, are proven to result in educational gains by a child, if a teacher refuses to practice these strategies, is that now a denial of rights?

With children with severe disabilities, the progress that students make is sometimes so slight, so minimal in terms of the gains, that they could be easily missed.  In actuality, perhaps the only way that gains can be observed is via the systematic taking of instructional data.  You see, a teacher may have 13 students in a classroom with perhaps 8 IEP objectives each.  If the teacher is not taking data on the student, they she is claiming to be able to monitor 104 (8x23) objectives, objectives that may only evidence tiny steps of progress, in her head.  This is ridiculous!  It is not possible.  It is only through systematic collection of data on student performance that a teacher has any idea of how a student is performing on instructional tasks.

The other day, I was in a classroom with a student teacher.  She is doing a good job as student teachers go.  She had been taking data on student performance in a relatively regular, systematic fashion.  I asked her, "How are your students performing on their tasks?"  She replied, "Fine."  As I observed, I would have to agree with her, as my general impression was they were doing fine as well.  However, we randomly took 3 skills that students were working on and graphed the data.  The first student's data indicated that she had met criterion about a month ago.  That is, the level of performance for the skill that was considered mastery in the objective had been met...a month ago.  So the teacher had continued to work on the skill with the student, even though she had met the objective.  Because she hadn't graphed the data, she didn't know.  The second data set we graphed indicated that the student had made no progress over the 5 weeks of instruction delivered thus far.  So the teacher had naively been providing an instructional strategy for 5 weeks with no benefit to the student relative to the objective as stated.  The third data set demonstrated that the instructional program was working and the student was making good progress!  Probably in another month the student would reach criterion.

The point of this is not to criticize the student teacher, but to say that understanding student performance is not something that can be easily seen unless one is made aware of how the student is actually performing via the taking of data.  To say, "I don't take any data" is tantamount to saying, "I really don't care whether or not the student is progressing."

Some teachers will say, "I can either teach or take data" which is a silly thing to say as the only way to teach students with severe disabilities is to take data.  So I would argue that if you are not taking data, you are doing something, but whatever it is it is not educating the students  in the manner they need to be educated.

An additional problem is the extensive problem of teachers working in classrooms for students with disabilities and doing nothing.  It breaks my heart when I see teachers that I have trained whom I know, know what they should be doing but have succombed to the pressure of the environment, the pressure to be mediocre from districts, and regress to the mean of NOT educating their students but rather babysitting them...all the while collecting their paycheck as if they actually were educating them. 

Teachers who are doing a good job, however, literally take your breath away when they show you their data, when the indicate that they know exactly where a student is functioning educationally.  But they are too often rare.

A basic premise I learned when I was being trained as a teacher was...

Every child can benefit from a public school education

I think I would now restate that to say that every child can benefit from a public school education if their teacher actually cares enough to educate them and be aware of whether they actually are benefitting from the education as it is being delivered.

McNair

Beyond Suffering: A Christian View on Disability Ministry

Beyond Suffering is the name of a new curriculum developed by Joni and Friends.  To quote from the introduction,

Beyond Suffering: A Christian View on Disability Ministry is a ground-breaking course of study created to transform the way Christians view God's plan for disability and suffering.  The textbook is the word of God accompanied by a comprehensive collection of professional articles written by more than 35 experts in ministry, education, sciences and disability advocacy.  The study guide contains 16 lessons, which are supported by video case studies and organized into four thought-provoking modules

• An Overview of Disability Ministry
• The Theology of Suffering and Disability
• The Church and Disability Ministry
• An Introduction to Bioethics

I was blessed to be involved in the development of this material and I have high hopes for the way it will be used within the Christian community.
It has the potential to be everything from a Bible study to a college class.  It is a wealth of material to guide the church.

The back cover quotes Chuch Colson saying,

When society wants utilitarian ethics, people on the margins get lost and are forgotten.  I salute Joni Eareckson Tada and the Christian Institute on Disability for equipping the churth to think biblically about the issues of life.

It is really an excellent resource.
McNair

"every one of them"

I was preparing a presentation for a local Christian high school that has begun to offer a special education class.  When thinking through what I wanted to say, I turned, as I often do, to 1Corinthians 12 about the body of Christ.  For some reason, verse 18 of the passage really jumped out at me this time.

15 Now if the foot should say, “Because I am not a hand, I do not belong to the body,” it would not for that reason stop being part of the body. 16 And if the ear should say, “Because I am not an eye, I do not belong to the body,” it would not for that reason stop being part of the body. 17 If the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be? 18 But in fact God has placed the parts in the body, every one of them, just as he wanted them to be. 19 If they were all one part, where would the body be? 20 As it is, there are many parts, but one body.

 There is an emphasis it appears to me in verse 18 that is present in most of the translations of this veres.  It doesn't say,

But in fact God placed the parts in the body just as he wanted them to be. 

Rather it says,

But in fact God has placed the parts in the body, every one of them, just as he wanted them to be.

It appears to emphasize every one of them are placed just as he wanted them.  It appears to emphasize this point as if in the face of questions that might be raised to the effect that "Surely this part is not placed correctly" or "Surely there is no place for this part."  No mistakes, no one without place or purpose, every one of them as they should be for placement into the body. 

As I indicated to the students, there is a mystery in this.  But it is a desire for discovery to understand the mind of God, to understand his purposes, to understand how he put his body together, to see the contribution of all.  Good stuff.

McNair

Expressions of deep woundedness from Wolfensberger

Several months back, I taught a class introducing students to Social Role Valorization. As a part of the lecture, we discussed the 18 wounds or as Wolfensberger describes them "The bad things that typically get done to devalued people." Having listed and described those bad things, he goes on to list the evidences or expressions in devalued people that they have been deeply wounded. I list them here for your consideration. These are quotes from "A brief introduction to social role valorization: A high-order concept for addressing the plight of societally devalued people, and for structuring human services" (3rd revised edition, 2004).

1. The wounded person may be, act, and feel like, an alien in the world, particularly the world of valued society. Devalued people can become very much aware that they do not fit in, that they are not welcome.
2. Wounded people may begin to dislike themselves and think that they really are despicable, unlovable, worthless; that everything bad that happens to them is their own fault, and that they deserve bad fortune.
3. Many of the wounds tend to make the wounded person very insecure.
4. These wounds can also generate an expectancy in the wounded person to fail at everythign or what psychologists have called a "failure set," which then tends to actually lead to avoidance of challenges..."
5. People who are the objects of devaluation may be very aware that they are a source of anguish to whatever people may still be around who love them, especially their family members.
6. Some people who have been deeply wounded by rejection and/or real or perceived abandonment -- especially early in life -- will embark on a real or smpolic quest for the abandoner.
7. Relatedly, people who have been deeply wounded in their relationships may develop fantasies about having once had positive relationships...
8. Relationship-wounded people may also seek a great deal of physical contact with others, perhaps going as far as being sexually promiscuous...
9. Deeply wounded people can become very distrustful of relationships

10. Many devalued people become embittered and perhaps even full of resentment and hatred towards the privileged world for having done, and continuing to do, such hurtful things to them.
11. Some people have been so badly wounded they withdraw from all contact from other human beings...
12. ...many deeply wounded people are so enraged about what has been and perhaps continues to be, done to them that they become overtly violent...
13. And coping with one's wounds can take so much energy that a deeply wounded person actually ends up reduced in intelligent, rational and adaptive functioning...

Wolfensberger's comments should give us pause.  It should also impact the way we think about developing ministries that would facilitate openness and inclusion of devalued persons including those experiencing disabiliteis.

McNair

"Your child has plateaued"

Had coffee with a friend of mine who's father is a doctor who works with many children with disabilities. He related the story of how his father will have interactions with teachers about the educational program of one of their students, and they will say to the doctor,

"There isn't really much more we can do. The child has plateaued."

So, as a teacher of a child with severe disabilities, I needn't do anything for the child because they have plateaued. Now that doesn't mean that I won't continue to collect my paycheck for supposedly being their teacher, supposedly educating them. But at the same time, you can't expect anything of the child in terms of skill development because they have plateaued. My only response to such a statement is 'HOW DARE YOU!" Who do you think you are claiming to be able to look at another human being and say that you have the ability to know that they can no longer learn anything?

I have seen slacker teachers who do not do anything educationally for their students, but even those slackers would admit that they are just lazy. They would not say that they are not doing anything because the children don't have the ability to learn. That such people could thrive within the educational system of our country indicates how dysfunctional that system is. It also indicates what the perception of the educational system is relative to individuals with severe disabilities. The system itself through its actions may support the limited expectations by its minimal expectations of teachers.

It breaks my heart and makes me angry when I occasionally see teachers that I have trained that are now useless to their students, giving them nothing of benefit to them educationally. They, by their actions, communicate that they are glorified baby sitters. Even though I have trained those people, I hope for the opportunity someday to sit across the table from them as an advocate for parents. I would say, "I know you know better, because I taught you. I appealed to you to not become what you have become! I warned you that districts will pressure you to be mediocre. And yet, here you are, doing little or nothing for your students educationally. You entertain them all day with frivilous activities when what they need is an education. You do nothing for them and then blame their lack of progress on THEM, saying they have plateaued.  Shame on you!"

So sad.
McNair

"the poorest of the poor"

When I was in Kampala, Uganda this summer, my host, Jeff Atherstone found out about my addiction (I mean love) for coffee and said he would take me on the "Kampala Coffee tour" which I think is something he made up. But it was great going to these various coffee places which were all slightly different and all excellent. I think my favorite would have been a place called 1000 Cups, but I ordered this goofy thing with mint in it. Anyway, at one stop we met with a friend of mine who is working in Kampala at the moment. As we were sitting there enjoying our lattes, a friend of hers walked up from a relief organization that was working there in Uganda. He introduced himself as being with this organization that is working with poor folks living there. He gave me his business card which had the tag line in quotes at the bottom, "working with the poorest of the poor." I immediately had a question, but was afraid that I knew that answer and didn't really want to embarass my friend, but I decided to ask him the question anyway.

"You work with the poorest of the poor?"
"Yes we do!" he replied proudly.
"Then you with poor people who are disabled?"
"Well, no, we don't work with disabled people."
"Well, then you really don't work with the poorest of the poor. Because the poorest would be those with disabilities among those living in poverty."

I didn't push it any further, however, both my friend, my host, my traveling companion and even the guy working with the poorest of the poor knew I was right. He had to walk away understanding that the claim on his business card was not correct. Hopefully he would follow up with a discussion with those who were in leadership with him or above him about the statement. At the very least, I hope he would have to hedge a bit the next time he described his organization as working with the poorest of the poor, basically because it is NOT TRUE!

So often when you talk to Christian leaders about those with disabilities and that they should reach out to people having this socially devalued characteristic, their response is, "I didn't know." I have to say that I don't believe them. As soon as I ask this guy, who I am sure has a huge heart for people living in poverty, who is spending his life, his talents with the poor of Africa which is no small thing, immediately he recognized that I was right. He knew he was NOT working with the poorest of the poor. I didn't need to explain anything to him. All I needed to do was mention that disabled poor people are poorer and he immediately recognized it.

So why then are they not working with that group of people if it is so obvious that they are the poorest of the poor and they identify themselves as working with the poorest of the poor? I can only say that these omissions are representative of choices. I choose to work with a particular group of people with one characteristic and choose not to work with another group of people with another characteristic. It is a choice. It is not an oversight. If it were not a choice, then if this organization who claims to be working with the poorest of the poor, would respond with immediate action! "Oh my goodness! We didn't realize that we were not getting to those who are in the most desperate condition of poverty! Thank you for bringing this to our attention." But if the response is a casual, "No we don't work with people with disabilities who are poor" then you must understand that this is a choice to NOT do what your tagline says you are doing.

Look at the mission statements for any Christian organization (just about) and wonder whether that statement would include outreach to people with disabilities. Then look at that church, that organization and see whether they are doing what they actually claim to be doing as evidenced by the presence of EVERYONE who should be included in their mission. If people with disabilities are not there, it is probably a choice on their part to exclude, not an oversight.

McNair

428

A friend of mine was recently admitted to the hospital. Even though a relatively young man, perhaps about 30, he has been struggling with hip pain for several years. To hear the medical description of the condition of his hip would make a brave person curl up in a fetal position and cry. I knew he was in pain, and was looking forward to a hip replacement. Well, he has had the replacement and now is in the hospital recovering. "The pain is the pain of healing!" he tells me which is much different then the pain of the past and I am very sure is encouraging to him as he knows that pain will soon stop.

When my wife visited him yesterday, she noticed that he had the number "428" on his hospital wrist band. The blessed life we have led as a family has not provided the need to be in the hospital, other than to visit others, very often. Kathi asked his mother, "What is the 428?" "That is the number of times he has been admitted to the hospital" she casually replied. How do you respond to that? To have been so ill over your life that you would have been admitted so many times, in a young life. I quickly realized once again, that I don't know what it is like to be a person with chronic health problems.

My friend (who I have only known for a short time and who has been unusually healthy by his standards) has had about 15 hospital stays per year. I have had 1 every 27 years. Are there words to say to understand this difference between two lives?
It is easy to talk about the sovereignty of God when you are on my side of the hospital stay equation.
I have another friend who recently related that she had lost 3 children who had not survived to birth, being miscarriages.
With two wonderful adult children, it is easy to talk about the sovereignty of God when you are on my side of the birth of children.

I am reminded once again of the John 9 passage. Man born blind, disciples ask who sinned, Jesus responds “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. As long as it is day, we must do the works of him who sent me. Night is coming, when no one can work." When the sovereignty of God is difficult in another person's life, is my response, "It sucks to be you." Is it, "There but for the grace of God go I." Could it be, "My pain is less so that I can help you to bear up under your pain." "My time has not been spent in the hospital so that I can spend time with you in the hospital." I experience my life so that the works of God might be displayed, in my life and through what I do in the lives of others.

"To whom much is given, much is expected!" (Luke 12:42)

McNair

Helping those who may not realize they are being wounded

Leviticus 19:14.
Do not curse the deaf or put a stumbling block in front of the blind, but fear your God. I am the LORD.

I have written about this verse elsewhere in this blog but in discussions with my disability studies class last night, I was struck once again about one aspect of this part of scripture. If someone curses a deaf person, there is a good chance that the person who is deaf will not know it. If someone puts a stumbling block in front of a blind person, there is a good chance that the blind person will not know the stumbling block was deliberately placed there. In each of these cases, those who are being victimized do not know they are being victimized. The deaf person doesn't know that they are being degraded before the society in which they find themselves if I curse them. The blind person would simply assume that there was a stumbling block that happened to be in their way even though I might have put it there to entertain myself or those observing the situation when the person trips and falls down. There is thus a protective function that people in the environment must play in the lives of people with disabilities (or those experiencing other forms of devaluing) although those who are experiencing the devaluing may not realize they are being devalued or teased or victimized.

I stop someone from cursing a deaf person whether or not the deaf person knows it because I understand the ramifications of allowing someone to be victimized by the environment. I prevent someone from placing a stumbling block before a blind person because I recognize the effect of allowing people to make fun or sport of a person who is potentially defenseless against such taunting. I do it because I understand the ramification of not doing it even though those who are the victims may not directly perceive the ramifications because of their disability.

I have intellectually disabled friends who talk to me about how some people are nice to them and some people are not nice to them. The situations they describe reveal that people are unkind in ways that reveal their taunting of a person with a disability...their taunting is disability related. My friends do not make that connection, the connection to a personal characteristic that they have, but simply just see the other person as randomly nice or not nice.

As an advocate, I must be aware of the ways in which a person is wounded (search this post for the 18 wounds) and do what I can to prevent the wounding, whether or not the person with disabilities is aware of the fact that they are being wounded. I know people with high functioning autism who are unaware of the way they come across socially. Because of their consistent experience socially with the world whereby they are treated as if they were strange or weird, I attempt to mitigate social situations such that relationships are less tempered by the environment's perception that the person with autism is strange. They may not be aware, I am. Through my efforts it is hoped that the wounding ceases, independent of the perceptions of the person with the disability.

McNair

"...compel them"

In the Luke 14 passage about the Parable of the Great Banquet, when the host is rejected by his invited guests, there is the following interaction between the master and his servant.

“The servant came back and reported this to his master. Then the owner of the house became angry and ordered his servant, ‘Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame.’
“‘Sir,’ the servant said, ‘what you ordered has been done, but there is still room.’
“Then the master told his servant, ‘Go out to the roads and country lanes and compel them to come in, so that my house will be full. I tell you, not one of those who were invited will get a taste of my banquet.’”

On a recent trip to Uganda, I was talking about this verse when I was struck by the word "compel" in the passage. There was a large athletic man who was one of the attendees at the training. I wondered aloud to the audience, "Could I make James come with me to church?" They all shook their heads "No," as nobody could easily, physically make James do something that he didn't want to do. It then struck me that the idea could be that of a compelling argument. Kneeling before James, I said, "Please come to the banquet. We will give you good food. We will treat you with respect and not embarrass you. We will make you feel like a friend and this will not be the last time we ask you to be with us. You see our Master wants you to come. He sees you as desirable and wants you to be among those who fill his banquet hall, his house. You will be given the same food as everyone else. Please come with me. My master will be disappointed with me if I cannot convince you, cannot compel you to join me."

If there was further hesitation, I would ask, "What can I do to change your mind so that you will give the banquet a chance? Perhaps I can bring you a taste of the food or bring others to you who have been to the banquet and had their fill. Please come with me as I don't want to disappoint my master who has commanded me to compel you to come to the banquet! He is already angry at those who have been invited and have rejected him."

If people were at society's margins (the poor, the crippled, the blind, the lame), one would think that an invitation to come to a banquet would be all that would be required. One might think they would be clamoring to get into the banquet. So to have to direct someone by saying, "...compel them to come in" indicates that the master knew that they would NOT want to come in even though they were poor and living on the margins of society. This reveals more about how the Master had been represented then it does about those who were invited. If I have to compel you to do something as positive as attending a banquet, it implies that it is something that you are not predisposed to do, that you would typically not choose to do. Perhaps your personal experience tells you, "Don't trust those people who invite you." No, you must be compelled. Perhaps if you are able to be convinced then you might give them another chance, you might change your perspective.

There is a saying that insanity is to do the same thing over and over again thinking "It will work this time." That people would need to be compelled to fill the Master's house, tells us that these people are not insane but are likely very rational, perhaps having given up on going to the Master's house. "Compel them to come in that my house might be full" is the command from a Master who knows his servants, AND those whom he desires to come into his house: "the poor, the crippled, the blind and the lame."

McNair

Lessons from Uganda

I just returned from a couple of weeks in Uganda. I was there with a friend and colleague, Dr. Rick Langer, speaking on issues related to Christianity and disability, at 3 different universities. Each of the three have an interest in increasing their work in the field of disability through offering either majors or minor programs of study. In speaking to these groups, it is always rewarding to "connect the dots" for people. People who have perhaps grown up in church and have a sincere desire to serve God but who have been largely blind to the presence of persons with disabilities in their communities. We left feeling that perhaps we have sparked greater interest and desire in first being aware of persons with disabilities, understanding a bit of their life experience, and then planning for next steps such that they would be included as integral parts of the church body.

At one university, we were invited to visit the home of a woman whose son had severe disabilities, including hydrocephalus which had been treated later in his life such that he was largely bed ridden. The mother told of how she is largely alone in the young man's care, with little help from anyone. As we stood on the porch of her home, one could see the steeple of the Catholic church, perhaps 50 yards from her home, and the gates of the university 100 yards away. As we addressed the students, we repeatedly spoke of how there were people desperate for help, only 100 yards from the gates of the school. The students were studying in the school of theology/child development (an interesting combination) and were very interested to learn that they could have a positive impact on a family and learn about children with disabilities simply by taking a short walk.

Other children were sequestered in rooms or parts of small stores. One grandmother was raising 10 children, one of whom was a girl with disabililities by trying to sell chickens that she raised in a small 6x6 pen. You could see the struggle on her face. Once again, this woman was in the community close by to the University where students could have a huge impact on the family.

It is my hope that should I return to this part of the world, things would be different for these families. There was an incredible gathering of people in the know, who didn't know each other but together comprised a critical mass to get things done.

We left each session very encouraged and very excited about what the future holds.

McNair

Reflections on travels thus far...

I have been blessed to be traveling for about a month. Thus far, I have been attending a conference of the European Society on Theology and Disability in Skoorl, Netherlands and assisting with training (along with Kathi) for Ukranian pastors in Lutsk, Ukraine. At the moment, I am in Uganda, but work will not begin till this afternoon.

Some observations thus far...
Attended sessions in Skoorl on the "priestly passages" from Leviticus and elsewhere about disability provided by a brilliant scholar, Dr. Sarah Melcher from Xavier University, Love and autism (not correct title) by Dr. John Swinton which was very thought provoking among others. The first meeting of this society 4 years ago was wonderful, but the quality of presentations this time was very good. Papers will be published in the Journal of Religion, Disability and Health in the future (about to get a new name) and I would highly recommend anyone interested in the topic getting a hold of that issue in particular.

Pastors were very receptive to information about the social consequences of disability, facilitating faith development in individuals with disabilities, and the importance of integration in work and ministry. Lots of great questions and involvement from participants. We then visited a camp patterned after the Joni and Friends Family Camps with the pastors where we interacted with families and children and kind of provided feet to the ideas shared in the conference. I think this is a good training model for pastors as it puts together theory/practice with being able to view actual practice. I also now own a Bart Simpson keychain which was given to me by a young man at the camp. He got a flashlight in exchange but the keychain will have a place of honor in my office. Also renewed a lot of friendships, particularly with Sergey, Natasha, and Roman who are leaders at Fimiam church which is a real innovator in disability ministry in that part of the world. A highlight was sitting for an hour with Sergey and Roman and just strategizing about next steps for their work. Was a delightful, stimulating and hopefully strategic time together.

We are now in Uganda, Rick Langer and I and are about to embark on two weeks of trainings. Have made some helpful contacts and had some wonderful conversations thus far that will help to guide future work in Uganda. Actual training begin today.

Please keep us in your prayers,

McNair

Biologos

This entry is perhaps not directly related to issues of disability but relates to a couple of meetings I attended this past weekend. Both meetings were attended by Dr. Frances Collins, past director of the Human Genome Project, and currently the head of NIH. He impressed me as a brilliant man, a humble man and a man of faith. He formed the Biologos forum, and then turned over leadership to Dr. Darrel Falk, when he took over NIH. In a nutshell, this group is attempting to put the facts of science, evolution in particular, together with the Christian faith. This is a task that is very threatening to very many people.

In a conversation with Dr. Collins, I asked him whether this moment in time where the Church is being confronted by the facts of science is tantamount ot a "Galilleo moment." His reply was "Yes."

Biologos talks about understanding God from two books. Obviously, the Bible is God's revelation of himself. However, they also point to the world, to nature. Citing Psalm 19, they also look to God's revelation of Himself in the world.

1 The heavens declare the glory of God;
the skies proclaim the work of his hands.
2 Day after day they pour forth speech;
night after night they reveal knowledge.
3 They have no speech, they use no words;
no sound is heard from them.
4 Yet their voice[b] goes out into all the earth,
their words to the ends of the world.

I honestly am not entirely sure what I think about Biologos and the efforts to combine the facts of evolution with the Christian faith. I know that as a Christian, I have absolutely no fear of truth, including the truth of science (eg. the Earth revolves around the Sun).

I would recommend the Biologos website to you for you to draw your own conclusions. I would also recommend that you visit the website with a very open mind.

God bless,
McNair

Model Programs From Various Faith Traditions

In meeting with people from faith groups and denominations, I am often asked about model programs that might be closest to the “state of the art” in terms of including persons with various disabilities. Recent research has also caused me to ask that question, particularly from an various faith perspectives.

What are best practices in the Muslim community, for example, and where might those best practices be observed?
Where is the “state of the art” best evidenced among Mormons?
Where can I go to view model programs within the Jewish community?
Are particular denominations leading the way for the Christian world, and/or what churches are doing a particularly good job?

Additionally, across faith traditions, what “parachurch” organizations (religious organizations that are not necessarily operated within a particular faith tradition), practice models that support the goals of what might be called best secular practices like integration, age appropriateness and functional skill faith development?

If you know of a good program, would you perhaps send me just a name of the particular faith group or program, their location and their website. These names could be sent to me at mail@jeffmcnair.com .
Personally, this information would assist me significantly with work I am currently engaged in.

Thank you so much for your assistance!

Blessings,
Jeff McNair

A picture is worth a thousand words

Yesterday, I had a very important meeting with some governmental officials regarding church/disability issues. As I always do when I have things I am concerned about in my life, I took my concerns to my church for prayer. In particular, I take my requests for prayer to our Light & Power group, a group which includes people with various disabilities.

As you look at the picture above, you see a man in need surrounded by loving, caring people who are lifting him up in prayer. It is a powerful image. I could just leave you with that image as what you see is really all that is important. But because I am trying to facilitate the inclusion of devalued people into the church, I will tell you that the tall man in the midst of the group is me. I am not a devalued person by the world's standards. By the world's standards, I might be considered successful because I am educated, have a career and have a home and family.

The people around me have experienced discrimination on a variety of levels because of a characteristic they have that society devalues. They would each be considered "disabled" by society. But look at the picture. Who is in need and who is ministering to the need? Do these characteristics matter in any way when people go before the Lord in prayer? They are blessing, encouraging, benefitting me. I am submitting to their ministry.

These kinds of images need to be more prevalent within the church. If people devalued by society because of a characteristic called disability are not contributing to the edification of others, it is probably because they have not been given the opportunity to do so.

It is our discrimination that distances them.
It is our discrimination that always puts them in the position of being recipients of ministry.
We are the same. To see us as different is not to see them as they are in the picture. It is a contrivance.

McNair

More on the Good Samaritan (a year later)

To begin with, read the story of the "Good Samaritan" if you haven't ever read it before, and then continue on with this blog post. You can find it in Luke 10:30-35.

I want to think of the connections between this parable of Jesus that was provided to illustrate who a neighbor is, and how this relates to interactions with people with disabilities. Here are a few observations about what it means to be a neighbor to a person affected by disabilities.

1. Why did the man get beat up/Why does someone have a disability?
...We can ask why things happen to people but ultimately we do not know. Additionally in this story, the reason why the man was beaten is totally irrelevant: the point of the story was the response of the Samaritan who understood who his neighbor was.
2. The beaten man had everything stolen, he is in poverty with no resources of his own
...Those with disabilities may have limited or no resources of their own to assist themselves.
3. The beaten man was abused and left "half dead"/he was actually disabled temporarily or long term depending upon the severity of the beating.
...Did you ever think that the man who was beaten was actually a disabled man as a result of the beating. So, Jesus uses the example of helping a disabled man as a way of illustrating the point of being a neighbor.
4. The beaten man may have been unaware of his situation as a result of his beating, perhaps passed out (he was "half dead").
...People with disabilities (particularly intellectual disabilities) may be totally unaware of their situation and what is happening to them. It is not unlike the Leviticus 19:14 warning about cursing the deaf or putting a stumbling block in front of the blind. Although he might not recognize his situation, I do and must do what I can to help independent of what he understands.
5. Priest and Levite "saw" the man and deliberately avoided him...they saw that he was beaten (disabled) and passed by on the other side...he was not a priority for them
...I have too often been told by Christian leaders that ministry to persons with disabilities is not a priority. These leaders are exactly the same as the priest and levite who walked by on the other side. It is what I call "Know excuse"...I didn't know. Well if you didn't know, why do you have handicapped parking spaces and restrooms with the big stalls? Who do you think they are for?
6. The Samaritan, stops, takes pity on him, goes to him, and assesses his wounds to determine a course of action
...Elsewhere in this blog, I have spoken about Wolfensberger's 18 wounds. I can tell you that those wounds are a good representation of the experience of many people with disabilities. If I take the time to assess a person's situation, I can see how they are wounded and come up with some kind of solution to address the wounds. It starts by stopping, going to the person and finding out how they are wounded.
7. The Samaritan stopped to help someone that the culture clearly considered as something different from itself (Samaritan sees a Jew, non disabled sees person affected by disability)
...No doubt, Jews and Samaritans were conditioned by their cultures to see each other as different, as enemies, as other. However, the Samaritan rejects his cultural conditioning and simply acts like a neighbor to the hurting man. He sees him as a man, not a different race.
8. The Samaritan ignored the potential "danger"
...People are afraid of relationships with needy people because of the demands they might make on them. If we are to be neighbors we must ignore this "danger".
9. After assessing wounds, bandages them "pouring on oil and wine", he did what he could.
...Probably there is more that could have been done to improve the care provided, more to be learned, but he started with what he knew...then he took him to the inn to pay for further care. He did not excuse himself saying, "I don't have any training" but did what he could and then took him to people who could help him do more.
10. Ministry cost him something and the cost was ongoing to some degree but he still made the decision to get involved.
...I was once told by a pastor that ministry to people with disabilities was a "black hole for service" the implication being that I should not get involved with people who's needs will constitute and ongoing cost to me. I suspect I should just serve people who I can serve quickly and then leave alone...but is that the Christian model Jesus provides here? No the support needed was demanding and ongoing.
11. The Samaritan put him on his own donkey (gave him a ride to the place where he could be ministered to) and "took care of him" for a whole day
...The Samaritan gave him a ride to church, so to speak. When was the last time you gave someone a ride to church who was not able to get there on his own? Have you ever made two trips to church so that you could pick up others who needed to get to church?
12. Ultimately the Samaritan developed a relationship with the man via providing for his care, and looking in on him when he returned reimbursing for further expenses.
...The Samaritan didn't drop the man off at the inn and make a hasty retreat. No he took the man there, paid for what was needed and said he would come back and pay for whatever else was needed. He established a relationship with the beaten man and the caretaker of the inn in order to get the best services for the person he perceived as his neighbor.

Theology awakened by disability

There are those who worry about developing theology through various lenses of disability, or gender or ethnicity. I agree with their concerns. Theology should stand on its own as after all it is about understanding who God is. However, if my understanding of who God is results in me NOT loving all of his human creation then I don't understand who God is. I would worry that any conclusions that grow out of that flawed starting point are suspect. They are particularly suspect when I see the way the Christian world interacts with people it may deliberately choose not to love. We may not need a "disability theology" but we definitely do need a theology awakened by disability.
A student in a class at CBU wrote me the following recently.

When I interviewed this pastor about the efforts he has engaged in to bring persons with disabilities and their families into their fellowship, his response seemed incorrect, so to speak. He stated that he has been called to make disciples of the people, not to have a special ministry for individuals with disabilities. He indicated that nowhere in the Bible does it state Christians are to do so. I reminded him of all the times Jesus modeled the correct way to respond to the disabled, by reaching out to them and going against the status quo. He stated that why didn't Jesus reach out to all the disabled then. He did admit that everyone is equal, in that we all need Jesus. However, he said that marketing for the disabled to come to church is not correct.

I truly do understand that I am out of my depth in talking theology and I understand concerns about interpreting theology through various lenses. My point is that if I can develop a Christian, theological perspective that does not include love, that supposed understanding of God is flawed. How do I know that theology is flawed? At least in part through the experience of persons with disabilities with the Christian church. I would say I am looking for evidence of theology being acted out in the lives of people. In Matthew 15, Jesus speaks of the religious leaders of His time saying, "These people honor me with their lips but their hearts are far from me." I don't know how I can get more basic in understanding God then to say "God is love." If I don't even have that as a starting point for theology there is little left to worry about, right or wrong.

Those who gain entre into Christian colleges and seminaries with programs that engage disability, bring a corrective I would argue, to the theological positions they have often been built upon. I have often said that I believe this work is one of the most important things we could be doing in the world! What is it that we are changing in them? It may be as simple as teaching them about love. We are pointing to foundational theological positions, however, what is it that this awareness is stemming from? Is it not the experience of persons with disabilities? If churches and theologians and Christian colleges were responding in love to people with disabilities we would not need this corrective? That bringing disability to the Christian world is such a incredibly mission critical exercise, to me, points to our theological problems as the Christian church. Our awareness of those problems, in part, grows out of our understanding of the experience of those with disabilities.

McNair

The passing of Dr. Wolf Wolfensberger

It is with a sincere and great sense of loss that I share the following here. It was one of the great honors of my life to have known Dr. Wolfensberger. My prayers are with his family and friends. Please keep them in your prayers as well. Also please pray for Ms. Susan Thomas who was Dr. Wolfensberger's right hand colleague for so many years.

Dear Friends and Colleagues,

We are saddened today to learn of the passing of Dr. Wolf Wolfensberger this past weekend. His death is a great loss to not only the thousands who embraced his research and teachings, but to the thousands whose lives have been changed by the values and principles he espoused.

Wolf Wolfensberger was made an honourary life member of Community Living Ontario in 1979 and was honoured at the conference at Queen's University that year. He was also presented with a Lifetime Achievement Award at the 2005 Community Living Conference in London, Ontario.

Wolfensberger lead the Normalization movement in North America and formulated the concepts of Social Role Valorization and Normalization. His teachings had a profound influence on the core values and principles of Community Living associations across Canada. Through his work, he shaped our beliefs about how we should support people and their families. He taught us that when people are supported to achieve socially valued roles, they inevitably develop meaningful relationships and rich lives in community. No other body of work has been as influential in shaping the way that people think and act with respect to the inclusion of people who have an intellectual disability in our society.

In 1991 Normalization was ranked as # 1 in the “Education and Training in Mental Retardation” list of 25 classic works in the field and in 2006 Exceptional Parent magazine named “the Work of Dr. Wolf Wolfensberger on the Principles of Normalization and Social Role Valorization” as one of the 7 Wonders of the World of Disabilities.

Our hearts and prayers are with his family and friends.

Dr. Wolfensberger will always be remembered for his brilliant mind and his great heart for disenfranchised and devalued people. In speaking with him you recognized you were in the presence of a great human being, someone of depth in his understanding of life. I will never forget his kindness and patience with me as I sat under his teaching on several occasions. The world has lost a significant force for good.

McNair

Some musings about a Christian model of disability

Using the social model of disability we look to the effect or the impact that the environment has on individuals. It is arguable that the environment has never been fully accepting of people who are atypical. So the change that is being advocated is not a change back to a better day but a change to a new day. So to change the environment under a social model of disability is to create something entirely new. What we are about is softening environments that people with disabilities find themselves in. What we are about is changing environments so that they do not reflect negative societal attitudes or negative historical practices towards people who have disabilities, as well as limited physical notions of what it means to be a human being.
A Christian model would be a combination of the social model and something else. The social model component of the Christian model of disability would be that the environment would change such that people with disabilities might experience of what might be called social healing. Social healing is not a change in an individual in the way one would typically think when one thinks of healing and an individual with disability. Rather, social healing implies a healing of a sick environment such that it changes in its interactions with people with disabilities. The end result is that although those with disabilities have not changed they feel as if they've changed only because the environment is different. In some ways, social healing is a permutation of the social model of disability.
In a Christian model we are not only attempting to change the social environment, we are also attempting to change the way that individuals with disabilities see themselves. A Christian model would take the traditional biblical notions of human beings and just ensure that they are applied to people who have a difference known as disability.
In summary, however, a Christian model of disability should do several things.
First, in many ways the Christian model would adopt many aspects of the social model of disability in terms of saying that much of the difficulties faced by people with disabilities are not due problems that they have within themselves as much as they are due to the way in which society, the way in which the social environment interacts with them. The second aspect of a Christian model is to understand who people are who have differences called disabilities in relation to those who are more typical. A Christian model would also rely heavily on the sovereignty of God which is a difficult thing to do. To rely heavily on the sovereignty of God is to accept oneself as one is. This acceptance of one's self is not some syrupy, paternalistic pablum. Rather it is fully loaded, with God at the center telling all people they are a reflection of who He is and how He can be seen in the way he has made them. The Christian model therefore is not saying something or creating something new in the way that people with disabilities are understood. It is merely (but powerfully) awakening all to who people with disabilities are from a biblical perspective.
A third aspect of a Christian model of disability is to understand who God is. God is in charge. God is sovereign. Things will happen in our lives which will bring us joy. Things will happen in our lives which will cause sadness and discomfort. The Christian model would accept that these things come from the hand of a loving and just God and are a part of his plan not only for individuals but also for society. This is a critical aspect of understanding the Christian model of disability because this implies that there are purposes behind the things that occur in the lives of human beings. The notion of a sovereign God who is all-powerful coupled with the experience of disability in the world can largely lead to several potential outcomes. One is that God is in control, however, our sinful condition causes things to happen in the world that God would not necessarily desire, but that he definitely did set in motion in response to human sin. A second idea is that God directly causes disability in the lives of human beings in order to accomplish his purposes. These two options both implicate God as being behind disability. Now if God is behind disability then somehow it is a part of understanding his plan for human beings. This is an important understanding because disability would then imply purpose, it implies a lack of randomness, and it implies value in disability. If God is behind the cause of disability or if God is the cause of disability it implies that there is a purpose of disability that accomplishes something that he wants to accomplish. So therefore from a Christian perspective not only does the environment need to change, not only do biblical principles related the human beings need to be applied to those with disabilities, but we must also understand that there are purposes behind the things we see occurring in the lives of people in the world. This is a very difficult notion to swallow, to understand, to accept because of the suffering that we see in the world. It is only through faith that we can come to trust God in the midst of the difficulties that we see in the world. So a critical third aspect of the Christian model of disability is to understand who God Is, understand who God is in relation to man, understand the sovereignty of God and then put these things together in a way that leads us to faith and acceptance of God's purposes in our life.
The experience of disability significantly includes problems in each of these three areas. Society does not want to change. Society wants to continue in the way that it is currently functioning. Therefore one problem of disability relates to the social consequences of disability.
Human beings who have disabilities are either taught or come to believe that they have less value that they have some negative characteristic and as a result see themselves negatively, see themselves as not as valuable which is a second aspect of problems revolving around disability.
And thirdly people with and without disabilities do not believe God do not trust God do not understand God to any extent and therefore the purpose of differences in the lives of human beings is not understood. This is the third aspect of disability that is problematic.
A Christian model therefore would say the environment (the society) needs to change, the individual needs to change in their understanding of themselves from a biblical perspective, and understandings of God and who God is in reference to the experience of human beings need to change. A combination of these three changes, in society, in individual self perception and in understanding God will result in more positive outcomes are people with disabilities as they become more integrated into the larger society. If any of these areas are not developed we will continue to see the problems that we see. If your society continues on with its negative perceptions then the experience individuals with disabilities will continue to reflect the negative social consequences of disability. If individuals with disabilities don't see themselves in the way that the Bible would portray them then they may come to understand themselves as being of limited value of having no purpose as mistakes or defects or variety of other negative understandings of themselves. Finally if the individual with disability does not understand who they are in relation to God and who God is and they potentially see their life experience as random and having no meaning.
But with an understanding of who God is, there is the potential that they see their experience more as a part of a larger plan that comes from the hand of God potentially giving meaning to their lives and their life experience.

Texas plans to cut chaplains

Apparently, the State of Texas is cutting funding for chaplains. I received the following (from an email) and posted it here for you to take action should you desire.
McNair

Dear Ministry Friends:
Here is the ugly reality facing Texas:

1)The primary budget cutters do not value what Chaplains do. They have cut the entire department. These trained professionals manage the religious programs at each Texas Prison.

2)If they are cut, the program will have to be managed by a correctional officer or a secretary. (They will be pulled from their other duties -- little savings, huh!)

3)Chaplains also provide "Pastoral Care" for everyone in the institution. It is difficult to find a community of 500 people in America which does not have pastoral care. Such care will be very hit and miss without the Chaplaincy Department if it occurs at all.

4)All a Chaplain has to do to recoop his entire yearly salary is influence one prisoner a year to give up his/her criminal activity. The state will pay more on the person's next incarceration than is paid to the chaplain in a year.

5)The very effective Religious Programming which we now have in Texas prisons, does not happen automatically. Religious Volunteers must be recruited and managed. That is the task of our chaplains. Without them, the programming will become very uneven, if it is able to exist at all.


My friend Chaplain Xxxxxxx Yyyyyy reminds us of the importance of this grave matter and how time sensitive it is:

HB 1 has Chaplaincy listed as "zero funded" ... which means if it is not "funded" in House Bill 1 (the Appropriation Bill), and not "funded in Senate Bill 1( the Finance Bill), in a couple of months both the house and senate will appoint from the Senate Finance Committee and from the House Appropriations Committee about 3-4 from each body. They will form the Conference Committee which works out the differences between HB 1 and SB 1. It could be TOO LATE if chaplaincy is not "funded" before the conference committee. The Key is encouraging people (constituents) to get with their Rep and Senator and express how important it is to you and how it is good for Texas to continue the Chaplaincy Department with at least one chaplain at each prison. Say to them: "Don't Let Chaplaincy fail to get Funded on your watch" - "If we lose it here, we may NEVER get it back."

Action Plan:Contact by personal visit, telephone call, letter, fax or email your State Rep and State Senator.
1) The address of your State Representative is: The Honorable (Name), Texas House, P O Box 2910, Austin TX 78768-2910

2) The address of your State Senator is: The Honorable (Name), Texas Senate, P O Box 12068, Austin TX 78711

Also please contact your Statewide Officials:
1) The Honorable Rick Perry, Governor's Office, P O Box 12428, Austin TX 78711 (no email, must contact through his website)

2) The Honorable David Dewhurst, Lt. Governor's Office, P O Box 12068, Austin TX 78711, phone, (512)463-0001, fax (512)936-6700, david.dewhurst@senate.state.tx.us

3) The Honorable Joe Straus, Speaker of the House, P O Box 2910, Austin TX 78768, phone (512)463-1000, fax(512)463-1064 joe.straus@house.state.tx.us

Other people will be contacting the state officials about this issue. In this case "More is Better." We want to stack up communications on the Austin Desks about this issue. If you personally take time to contact these 5 people, you are standing up for our cause!

Do not forget to Pray for guidance as you make contact with those who represent you in State Government!

Does disability = suffering?

When a child is born to you, you have many expectations of what they will do of who they will be. Things you always wished you could do. Things that you never had the opportunity or aptitude to do. But children may "disappoint" because they were not the person you expected them to be. Perhaps you are a musician and your child gravitates towards athletics. Perhaps you are athletic and your child gravitates toward art. You are a person who enjoys being outdoors and your child likes nothing more than to sit and read. Some expectations die because they are exceeded in different ways. Some expectations die because they are unfilfilled, perhaps because the child hasn't the requisite abilities. The disconnect between expectations and reality causes a kind of "suffering" for those with the expectations although the child may be oblivious to the disconnect and "suffering" because unless it is communicated to them that they are not meeting our expectations, they grow, happy with their lives, their interests, etc.
Now to want an athlete and have an artist may bum you out a bit, but to desire a typical child and have a child with Down syndrome, for example, has thrown people's lives into total disarray.

Parents may feel great fear when a child is born with an intellectual disability. I know of mothers who have abandoned their children on this basis. I also know the abandoned individuals with disabilities as adults, many of whom may have an apartment in the community, hold a job and other than wishing they had more money (a common malaise) are quite happy with their lives. Those same mothers who could not face having a child with an intellectual disability, actually lived an identical life to the child they abandoned.

This leads us to the point of the way the child with Down syndrome, for example, is perceived. Yes they will make increased demands on their family in terms of supervision, in terms of not being able to have a decent job and so forth. However, in their own minds, they will see themselves as doing fine. With children with disabilities for a while at least, they may be oblivious to their difference because they know of nothing other than their life experience. As they grow and notice the differences in those around them, this may cause an internal dissonance or actual suffering created by the environment or how they perceive themselves in reference to the enviornment. Sure, many will desire such things as getting married, having their own home, etc. and depending upon their ability levels as well as the ability levels and creativity of those in their enviornment, this may or may not be a possiblity. The issue is the problem of equating disability with suffering particularly at points where they are not necessarily related.

Metaphorically,it reminds me of issues related to racism. For many groups of people at different times in different places, racism causes or caused them to experience discrimination and that causes suffering. It is important to state that there is not suffering in simply being a member of a racial group in and of itself (which can be a significant difference in making the comparison to disability in some of its forms). Suffering comes from being a certain ethnicity in the midst of a society that is discriminatory against that ethnicity. If I were to equate suffering with race X, you might correct me saying that that may be the experience of people of race X but it needn't be their experience. To always discuss race X under the heading of suffering would imply to the outsider that there is indeed something of a connection between race X and suffering that is unavoidable. Suffering is not the societally imposed consequence of being race X, it is simply an observed characteristic of being race X, because look at all the people in history who were race X who experienced suffering (albeit imposed by society). That does not diminish the reality of the suffering experienced by race X. It was and is real. However, if I take the next step and purposefully link race X with suffering, to some degree I may be complicit in that suffering. In the case of persons with disability, say Down syndrome again (who are arguably not physically suffering from their disability), people will then try to eliminate suffering they assume people with Down syndrome are experiencing using what they would call "humanitarian" means through such practices as abortion.

I do not want to deny that when people are suffering, they are indeed suffering. There are specific conditions that persons with disabilities might have that would cause physical suffering in a variety of different ways and I do not want to trivialize that suffering. There is also the kind of suffering that parents of children with disabilities might face which is also very real. Parenting children with autism, for example, can be incredibly difficult.

However, I do not want to project suffering onto people when they are either, 1) not suffering in their own minds, their own experience, or 2) are suffering because of something that I am doing that I can stop doing.

As stated, people may suffer when they have a disability for a variety of reasons. I may suffer due to my actual disability, perhaps it causes pain to me. I may suffer because of the disability of my child who has a disability as might my family suffer with this child. People may suffer due to the social consequences of disability to themselves or to their friends and family.

We must be careful, however, not to equate disability and suffering, particularly in situations when it is the social consequences of disabilty that lead to suffering. To equate suffering and social consequences indicates a giving over to societal effects of disability. Now I can understand that social consequences are the reality, however, at the same time if I refuse to equate suffering and disability on this level, perhaps I take the first step in changing what is considered common sensical and conventional wisdom. "Of course people with disabilities suffer from their disability" we say. But that is not necessarily true. Many people with intellectual disabilities, for example, are unaware they even have a disability let alone being distressed about it. I know of others who have physical disabilities who have come to understand themselves with their differences and are not suffering physical pain from their physical disability. They themselves have told me that they are doing fine and just wish "People would treat me like I am normal." We must be careful, therefore in equating suffering and disability and only talking about diability in the context of suffering.

McNair

Differences called disabilities

I just had a fun lunch with a colleague of mine. We discussed a variety of theological issues related to disability. One of the points that I was making was the intersection of the sovereignity of God in relation to disability. The question is whether God causes disability or whether it is just the natural order of things as a result of the Fall. We came away with different perspectives on this issues and had a wonderful time discussing them.

One conclusion that I drew from our discussion, however, is that as Christians we run the risk of characterizing "disability" in the way the world does, a largely negative fashion, and then will say that God could not cause this negative thing. We call a characteristic of people negative and then say that God does not cause negative things to happen to people, therefore it is not of God.

If society were to take a person with Down's syndrome, for example, and as a society say that people with Down's syndrome are wonderful, loving people (which they are, although society does not agree when you look at the rabid efforts to prenatally diagnose and abort those with the syndrome), would we now credit God with the creation of Down's syndrome and thank him for it rather then say it is caused by natural processes and God just allows it? I think the answer is that "Yeah, we might do just that." If in my limited understanding, I can only see negatives in Down's syndrome, independent of where the negative comes from, I therefore will not be able to imagine that God would be the author of Down's syndrome. It is difficult when people suffer, whatever the cause. However, if people experience suffering related to their condition only because of the way that society treats them because of their condition, I need to rethink any fear of "blaming God" for the condition.

Now of course there are disabling conditions that are coupled with pain and suffering. God's sovereignity could be discussed in these cases as well. However, these are something different. Sin of individuals in society is typically not the cause of suffering in this case.

Yet in the case of many types of differences, called disabilities by society, the social consequences may be worse than the condition itself. I find this is particularly the case in those with intellectual disability. I have little difficulty seeing intellectual disability (as it is labeled by society) as an aspect of the creativity of God, and therefore the sovereignity of God. I can see God's sovereignity at work in the beauty, the change these individuals bring to those around them.

McNair