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

Friday, October 28, 2011

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.


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.


"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.


"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!"


Monday, October 17, 2011

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.

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.

"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."
"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?"
"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.

Tuesday, October 11, 2011

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.


Monday, October 10, 2011

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.

Wednesday, October 05, 2011

"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.