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

Friday, December 19, 2008

Jesus Christ, not so Superstar

Last night my family went into LA to see a musical play.  It is our tradition to do so during the Christmas holiday.  This year, we saw Jesus Christ Superstar.  I haven't seen the film, or the play before, but back in the 70's I had the record and remembered all the songs.  My theological IQ has improved a bit in 30 years and as I watched, I had to just shake my head.  Jesus was depicted as somewhat effeminate, pure white, and not a little strange.  Whenever he was not talking to a person, he appeared to be talking to himself, or maybe he was praying.  He also was portrayed as amazingly weak.  He was always tired and tempted and pretty much overwhelmed with the word he was in.  

The theology of the production was pretty trite although there were moments when various things would pop through that would make me think.  For instance in the scene where Jesus is overwhelmed with people asking to be healed, the people were not portrayed as individuals, but more as a kind of human mass with various heads.  They asked for healing for a variety of things, but once again they were just a mass of suffering which had faces as you would get a bit closer.  And of course, Jesus was portrayed as being overwhelmed to the point of frustration with this mass of humanity.  I wondered whether that is who people, who even consider who Jesus is, who do not believe in him, think he is about.  Unfortunately I think the church sometimes reflects this.  But Jesus made the world, for goodness sake, and is not overwhelmed by his creation.  Through faith, we have access to Jesus's power for blessing in the world.  It is through faith, however.  Without faith, we will be overwhelmed by the suffering mass of humanity.  With Christ, in faith we wade into suffering and become his hands working his purposes.

At intermission, my son and I had a conversation with a couple who sat in front of us.  The woman was somewhat drunk and the man very smug.  They spoke of how well the play portrayed Jesus's not so positive characteristic of being so self-promoting.  I wondered aloud to them, "Where do you get the idea that Jesus is self-promoting from the Bible account of who he was?"  I think they liked the Superstar account more and in some ways treated that as the truth about who Jesus was.  I guess when they go to Lion King, they think animals talk to each other and have political motivations they act on in order to gain power.  But what about the church would cause them to think otherwise?

Do we portray a wimpy other worldly Jesus, who is tired, and tempted and overwhelmed?  Was Jesus someone that hadn't really thought through the events of his time and his life such that he screwed a lot of things up as in the line "Every time I look at you I don't understand, why you let the things you did get so out of hand."  The life of Jesus is portrayed as my life often is and  sometimes feels: just putting out fires, running from place to place.  They don't see the plan in what Jesus did and who he was.  The church's response to people with disabilities is like a textbook example of something happening that we are unprepared for and not in accordance with any plan.  "How could God allow..." fill in the blank.  A tired, tempted and overwhelmed God can be expected to mess up and miss some things some times.  He is a God needing my forgiveness or at least my understanding.  "Cmon, God is doing the best he can!"  The JC Superstar form of God is up in heaven uttering an occasional "Damn it" when he messes up yet again.  Our response to him is "just rest tonight."

No I don't worship Jesus Christ Superstar, or at least the one portrayed.  People experiencing disability are not just a big mass of anything.  They are individuals whom God loves whom he knows intimately, who are a part of his plan.  If the church doesn't see people as unique creations whom God loves, they support the myths.


Friday, December 12, 2008

The regular life

A friend of mine contacted me this week.  She is a someone with a disability who told me about her feelings of loneliness and being stressed about regarding other aspects of her life that she is currently going through.  Hopefully, I can try to do better in terms of calling or visiting, but it is difficult.  I work full time, I have a family.  These responsibilities force choices on my time that I often don't like to make but I must make nonetheless.

An aspect of the empowerment of people with disabilities whereby they take on typical lives are the consequences of living typical lives.  My friend was living in a group home where there were other adults living.  She was unhappy there because of many of the restrictions that go along with living with others, particularly in a group home setting.  She made the decision to move out on her own.  She is now living independently, and largely doing very well.  However, when you live by yourself in an apartment, a natural consequence is that your friendships must be developed by you.  If you want people to come to your house, you need to invite them.  A natural consequence of living by yourself, is that if you do not make efforts to get out, to meet other people, to invite people to your home, you will be lonely.

This illustrates a critical principle in our efforts to facilitate regular lives for people who have been denied regular lives.  That is, regular lives are not perfect lives.  My presence in the community, living independently, does not mean that my life is suddenly filled with things that I necessarily would not have if I had less independence.  A critical aspect of a regular life is that I am largely left alone.  I find this in my own life.  I have many friends, however, unless I invite them to do something with me, I spend a lot of time alone.  Now I have the benefit of being married, but a regular life is a life of independence and aloneness if I rely exclusively on others to just come by on a whim.  Those living regular lives who don't experience a disability don't typically expect such a thing, so what does it imply about the "regularness" of the life of a person with a disability if they expect to be catered to in a way different from those not experiencing a disability?

 I am acutely aware of the restrictions on the lives of those who experience less independence.  They have neither the ability nor the understanding of how to facilitate friendships with people outside of the facility in which they live.  I therefore make an effort to come to them to bring the regularness of a friend stopping by for a conversation.  I go, for example, to a group home for adults with intellectual disabilities and have a coke and some ice cream while we just talk about what is going on in their lives.  If someone didn't do that, then their lives would largely be filled with people paid to be with them or people with equally regulated lives experiencing similar disabilities.  My presence brings a wild, off the reservation, kind of regularness.  When I visit, they stay up later, they eat foods that are fun (and not necessarily "good" for them or on the diet plan developed by a nutritionist) in larger quantities that they wouldn't typically eat, they may travel with me to someplace in the community they wouldn't otherwise be able to visit, they meet new people who are interested in them but not paid to be with them, have experiences typical to the average person, but not to people with regulated lives and so on and so on.

The person with disabilities living independently may live in poverty, but they are independent and pretty much have the opportunities to move about the community that anyone has.  But I find an expectation in a subset of people with this experience that I don't see in those who live in  more restricted settings and I admit that I am not sure what to make of it.  I am confident that some do not know how to make their own lives less lonely.  I also try to do what I can to enrich their lives and when someone tells me they are lonely, I feel a responsibility to reach out to them.

I guess I just also want to tell them "welcome to the regular life."  Regular life is often loneliness.  It is often making what you can of your own life.  It is maximizing your opportunities and not relying exclusively on others to make your life for you.  Obviously, there are people who have such significant disabilities that they have to have people in their lives, volunteer or paid, to do the simplest of things.  However, if I have achieved a "regular life" and I simply wait at home for other people to make my life into something when I have the ability to do most everything for myself, I may be proclaiming that I do not want a regular life.


Tuesday, December 02, 2008

From "Surprised by Hope" by N.T. Wright

I have been reading Surprised by Hope by N.T. Wright with some friends. I have found it a fascinating book. As the subtitle states, it deals with "Rethinking Heaven, the Resurrection, and the Mission of the Church." Here is a quote that grabbed me.

..."To hope for a better future in this world - for the poor, the sick, the lonely and depressed, for the slaves, the refugees, the hungry and homeless, for the abused, the paranoid, the downtrodden and despairing, and in fact for the whole wide, wonderful, and wounded world - is not something else, something extra, something tacked on to the gospel as an afterthought. And to work for that intermediate hope, the surprising hope that comes forward from God's ultimate future into God's urgent present, is not distraction from the task of mission and evangelism in the present. It is central, essential, vital, and life-giving part of it. Mostly, Jesus himself got a hearing from his contemporaries because of what he was doing. They saw him saving people from sickness and death, and they heard him talking about a salvation, the message for which they had longed, that would go beyond the immediate into the ultimate future. But the two were not unrelated, the present one a mere visual aid of the future one or a trick to gain people's attention. The whole point of what Jesus was up to was that he was doing, close up, in the present, what he was promising long-term, in the future...

The point of the resurrection, as Paul has been arguing throught the letter (1 Corinthians), is that the present bodily life is not valueless just because it will die. God will raise it to new life. What you do with your body in the present matters because God has a great future in store for it. And if this applies to ethics, as in 1 Corinthians 6, it certainly also applies to the various vocations to which God's people are called. What you do in the present - by painting, preaching, singing, sewing, praying, teaching, building hospitals, digging wells, campaigning for justice, writing poems, caring for the needy, loving your neighbor as yourself - will last into God's future. These activities are not simply ways of making the present life a little less beastly, a little more bearable, until the day when we leave it behind altogether...They are part of what we may call builting for God's kingdom. (pp. 192-193)

I want to pull a few sections out of this passage and touch on them a bit. Wright says, "Jesus himself got a hearing from his contemporaries because of what he was doing." This is so important in the life of a church in relation to disability issues. You can criticize me all day long about being closed minded or intolerant, however, if I am working to love, encourage and befriend people with various disabilities, well, it might just cause you to be silent. Unless completely foolish, people are still impressed by what others do over what they say they will do. Wright says that a significant reason that Jesus himself got a hearing was because of what he was doing. Why should people listen to you or your church? Is there any reason that a family member or friend of a person with a disability or a person with a disability herself should listen to you on the basis of what you are doing?

"The whole point of what Jesus was up to was that he was doing, close up, in the present, what he was promising long-term, in the future." How does what you or your church doing point to what you are promising long-term in the future for persons with disabilities both on Earth and in Heaven? Are you promising them a future where they will be a full member of the Body of Christ or are you promising that there is no place for them in the Body of Christ, in the Kingdom of God? We have the ability to provide a glimpse of the future even if we are not seeing a person physically healed. We bring glory to God by providing a glimpse of a future where disability is largely irrelevant. I say largely irrelevant because it appears that there will be vestiges of our Earthly life in Heaven (eg. Jesus' stigmata). My love, my acceptance, my caring, independent of your personal characteristics are a glimpse of the future. It is no wonder if people with various disabilities are not drawn to church. We give them a picture of a future without them through their experience of a present without them.

Wright also states that, "These activities are not simply ways of making the present life a little less beastly, a little more bearable, until the day when we leave it behind altogether...They are part of what we may call building for God's kingdom." He makes the point that our physical bodies are redeemed. Our existence is not merely a spiritual existence because this cannot be supported by scripture. So he claims there is some kind of a link between our physical bodies now, and the new bodies we will receive in the New Heaven and New Earth. I am confident that I don't understand what this means. However, there is a long term aspect of the things we do as people if we will only be aware of it (see April 10, 2005 blog entry). I think the effects are multifaceted for our own lives and the lives of others. They build God's kingdom in myriad ways.


Thursday, November 13, 2008

Broadening the notion of "ministry"

I had the priviledge of speaking in a class on suffering and disability at Biola University this past Monday. The class went fine.

Afterwards, one bright student approached me with her story. The child of deaf parents, she wondered about church ministry to persons who are deaf. Should interpretation of sermons into sign language be the extent of ministry with persons who are deaf? What a great question! So the only relevant aspect of being deaf is to be able to understand what is being said to you by someone translating. I am sure there are those who believe that, but I am not sure that I do. I suspect there are many other things that go along with being deaf that I have no understanding of and that if I treat deaf people as if the only important thing about their deafness is that they need to understand what I, or my pastor say, I am being very naive. Other similar questions flooded my mind like, "Are accessible restrooms the entire range of ministry to persons who use wheelchairs?"

The way the church typically responds, you might think so. I have several friends who have progressive MS. Is the extent of ministry to these people accessible restrooms, or a spot for their wheelchair in the church service? You might think so. When will the church, when will leaders in the church take on these issues such that those who experience the disabilities, and the rest of the congregation for that matter, become informed about what disability tells us about who God is, what the role of the church is, as well as thinking through the "whys" of disability. We may never know why, but we can sure explore the whys. Not knowing something has never kept Church leaders from speaking about it in the past. A rational exploration of the whys might be very helpful for all concerned and as with many things in life, the journey may be just as valuable as the answer. What does it imply to you as a disabled person, if I am struggling to understand the issues you face in your life from a Christian perspective? I think it implies at the very least that your issues are important and worthy of my consideration, my professional or pastoral efforts to understand, and at best that perhaps there are answers that might be found should I devote some or all of my energies to the issues.

Exodus 4:11 states,
The LORD said to him, "Who has made man's mouth? Or who makes him mute or deaf, or seeing or blind? Is it not I, the LORD?

Why would God do such a thing to a person? Because I know that God is love and God is just, there is something for me to learn if I will pay attention. God apparently deliberately makes some people mute or deaf or seeing or blind. I may never fully understand why, however, by devoting my energies to understanding perhaps God will reveal new lessons about himself that the Church has never learned but that God has for us to learn if we will only look.


Southern California has an earthquake drill

Today, California had an earthquake drill to simulate a 7.6 quake. The idea is to prepare schools, government buildings and businesses for what to do. The quake was to occur at 10:00 this morning.

One of my student teachers works with high school students with very severe intellectual and physical disabilities so I thought it would be interesting to go and view how the school would assist students in that type of a program/setting should such a natural disaster occur. As I was driving up, I noticed that what appeared to be the entire student body was standing and milling around on the football field. Of course! The way you prepare for such a disaster is to be in a safe area a half hour before it occurs. Why was I surprised?

When I went to the separate, county classroom area where the students with severe disabilities classrooms were, they were just coming back into the classroom. One student rolled into the room wearing a tee shirt that said on it, "insufficient memory" which was some parent's or group home's idea of a joke. I am sure the severely intellectually disabled student wearing the shirt had a great laugh over the message he was wearing. I never cease to be amazed at the things I see in special education settings. As the students sat there waiting, many of the aides barked at them to stop this or don't do that, very few actually attempting to converse, or explain to them what the change in schedule was about. As one tall autistic boy engaged in stereotypic behavior, his aide said to him, "That is a good autistic thing to do."

My student teacher told me that they were all just told to go out to the parking lot area for 20 minutes and then come back in. They then assembled in a large room, about 31 students most of whom were in wheelchairs, and people to assist them (about 20 teachers and ambulatory students). As the time came for the earthquake to start, I wondered what would happen. Well what happened was nothing. No drill, no noise or simulation of any kind. The whole thing appeared to be a waste of a half day of school.

It is important to me, however, that my teacher is prepared. She has a class of 9 students and two aides. I asked her to talk with her aides about what they would do in the event of a large earthquake. What do you do? Who do you take out first? She related that she and her aides were instructed to get under a table untill the quake was over and then help her students. I understand the rationality of that, but can you really imagine lying under a table in "safety" and watching while your totally defenseless, severely disabled students sit in their wheelchairs, or in their specialized seating devices, crying and screaming while the building falls down onto them. Do you think that would be the same instruction given to teachers working in a nursery? How about in another classroom. "Just get yourself safe and don't worry about your students till the whole thing is over." Do you think that is how teachers of non-disabled students would be instructed, or is there a double standard? Personally, I couldn't do it, and I think I wouldn't do it. If I am ever in such a situation, I pray that I wouldn't do it!

Afterwards, the students were rolled outside where the aides sat at a picnic table largely ignoring the students who sat there in their wheelchairs as the general ed students went back to class. Just another time for a break. This is typical. Any group setting is apparently time for the aides to be off and either socialize, or text message, or do their make-up. The ones I observed drank coke and talked.

I was so proud, however, of my student teacher and her aides who were really hustling! They got their students into walkers, or walked with them, or moved them into the classroom so they could get to work.


Wednesday, October 29, 2008

Social healing

The gospels have many accounts of people with various infirmities or disabilities coming to Jesus and receiving healing.  This is actually an evidence of him being who he claimed to be.  Does this type of healing continue to occur today?  I am sure it does, and I am not talking about the high profile evangelists making a lot of money from supposedly healing people.  To its detriment, the church has at times approached people with various disabilities with only a "ministry" of healing.  I have also know people who will never go to a church again because of the church's overemphasis on their need for healing, and the church's linking healing with the disabled person's faith or lack thereof.  I have discussed this elsewhere in this blog, but I will only say that if your perspective on disability is that the only answer, the only truly Christian response to disability is healing, then you need to meet a man named Paul who wrote a lot of the Bible, who apparently had a disability and although he asked God for healing was definitely not healed.

But I think there is a great ministry of "healing" that the church can play in the lives of every person who experiences a disability and also a healing in the lives of families of persons with disabilities.

Dr. Hans Reinders in his excellent book, The Future of the Disabled in Liberal Society, talks about the manner in which society addresses down's syndrome.  Basically he discusses the fact that typically, the suffering experienced by a person with down's syndrome is not the result of the syndrome, it is the result of society's treatment of the person who has the syndrome.  He goes on to indicate that we address a sociological issue with a medical procedure.  That is, I experience discrimination because of my disability, so society's solution is to kill me (through abortion) not to address society's wrong attitudes about me or my disability.  This, however, is the place where the church can have a particular impactful healing ministry.

If I am experiencing suffering because of the social consequences of my disability, then the church through its efforts can "cure" me of that suffering through what they do.  I will still have my disability, however, there is the potential that I will feel much less of the social sting of my disability should the church step up and be what the church was intended to be to me.  
So the church first of all comes to me and invites me in.  
The church then welcomes me and is glad that I am there.  
The church gives me opportunities to have responsibilities as that empowers me as a member of the church.  
The church talks about people like me, people who face the issues I face, from the pulpit, particularly issues related to my disability in order to help me and those around me.  
The church embraces me as a regular member, including me in all the social activities of the church.  
The church socially softens to overlook many of the socially impacting aspects of my disability such as social skills, other behaviors over which I may not have control.

This overlooking is not an uncomfortable, don't know what to do kind of overlooking.  This reminds me of times where I have seen people with severe intellectual disabilities doing ridiculous things in church like literally pouring the entire sugar bowl into their coffee cup.  As they did so, those in the environment looked on helplessly.  Whereas if someone they knew, or one of their children for that matter did such a thing they would correct them.  Correct them, not reject them.  I have a friend who due to a hearing impairment, speaks in a very loud voice during the sermon at church.  If the person wants to say something to me, like "Can you help me get to the bathroom?" it is going to be said in a loud voice.  I could try as hard as I wanted to get the person to not speak in a loud voice but it will never happen.  So I as part of the environment soften, the person doesn't feel condemned, and social healing occurs.  In every way possible, I as a disabled person, am a regular member of the church, the social network of the church, the religious training of the church.  The church interacts with me in a manner that understands that my disability will impact my life, but they first see me for me.  Together we work through the challenges and inconveniences that my disability presents.

I believe the end result of such a relationship with a church is healing.  It is the healing of the social issues which are typically many of the biggest issues I may face as a result of having a disability.  I may or may not be healed physically, however, many of my social interactions are in fact healed.


Monday, October 27, 2008

Lessons from Dr. Marc Gold

Thanks to one of my students, Lilian, I rediscovered a video by one of my professional heroes, Dr. Marc Gold.  Dr. Gold was known for his "Try Another Way" approach to educating students with severe disabilities.  I have linked the video here .  This video was so powerful at the time it was made.  People with severe disabilities were just beginning to exit institutions, and Dr. Gold comes along and teaches them a complex assembly task to illustrate just how wrong people were about who people with intellectual disabilities were.

Or should I say are...

Gold approaches his students in the video with such high expectations, you would think the students would improve and excel through the sheer power of his will.  But actually it is combination if his high expectations and the early stages of training procedures which have been shown to be so powerful. 

But there is at least one aspect of the video which is so sad.  Dr. Gold was at the start of a boom in understanding the education of people with severe disabilities.  He saw tremendous potential which he was able to realize via the instructional techniques he developed.  He saw a future of people with intellectual disabilities having real jobs because they were being well trained.  He decried the "Mickey Mouse garbage" that passes for work in sheltered workshops, once again seeing a future where people were doing real work.  

So fast forward 30 years...

The strategies advocated by Dr. Gold and shown as being successful in educating these students, are not being sufficiently implemented in classrooms.   Students with severe disabilities are too often babysat, independent of their age.  Expectations are so low and students are meeting those expectations. See Great Expectations.

Dr. Marc Gold died at an early age, but his love, his respect, the dignity he brought for and to persons with intellectual disabilities continues as his legacy.  It is my prayer that his legacy will be rediscovered by those in education and that his high expectations will find their way into special education classrooms today.  I am afraid he would be disappointed to see where special education is today, 35 years after he pioneered strategies that truly work for students with severe to profound disabilities.


Perfection and imperfection

As I have stated elsewhere in this blog, Kathi and I have adopted the practice of bringing friends of ours with intellectual disabilities to the Introduction to Special Education class when we teach it. We will bring 3 or 4 friends, interview them briefly, and then just allow our students to have the chance to sit down with the folks, grab a bite to eat and talk about whatever they want. The guest speakers know that they are there to help students understand the lives of people with disabilities, and are prepared to answer any question. At the end of the evening, students write a brief statement of reflection on the evening. Kathi is going through these reflection statements (hundreds of them) and looking at common themes.

In one of the papers, a student wrote,
why else would something perfect create imperfection but to set an example for us to follow
This is the type of thing students will often write, it is interesting from a variety of perspectives, some correct but mostly it is wrong. It is a platitude about disability and who God is.

First, the assumption is that those of us who do not have some recognizable, some diagnosable disability are somehow perfect and that those who do have a disability are somehow imperfect. That is the type of perspective that too many people have about who they are. They see themselves too much as "God's gift" even though they are drowning in their own sin, or trapped in their own vices, or just self impressed people. People with these characteristics are the "perfect" ones and those with some form of disability are the "imperfect" ones. In reality, we are all "imperfect" ones.

Second, God did and does create imperfect people and we all have the opportunity to observe it, from the example of imperfection in each and all of us. Perhaps we who are intellectually at a particular level deny our imperfection and those who are below that number do not have the ability to deny their imperfection. Even if they do, we intelligent ones find it cute or refreshing. We, however, are in more ways than not, identical to those with measured disability though we deny our imperfection.

So, third, in that way, those with disabilities are an example to us of us.
People with disabilities are not an example of imperfection to the perfect. They are an example of imperfection to the imperfect who think themselves perfect.
In that way, they are the example in a refreshing, nonthreatening manner. They do not come to us in their imperfection and say, look at me, follow my example. They come to us in their imperfection, and as we grow to know them and love them and in many ways become like them, we say, "We are all the same." I am imperfect as you are imperfect. But you are also a creation in the Image of God as I am a creation in his image.

Fourth, people with disabilities are just people. This is the profound lesson that I have learned after 30+ years of interaction mostly with people with intellectual disabilities. They are not here to teach me lessons any more that I am here to teach them lessons. They are just people living their lives, and through the living of their lives I have the ability to benefit and learn from them in the same manner that I have the ability to benefit and learn from anyone else. However, to say that they are placed on the earth solely to help me learn something, is once again the result of my prideful self-impressed nature where I see the world revolving around me, and I see myself as perfect and they as something other. I have said elsewhere in this blog, people with disabilities are indispensable (ala 1 Corinthians 12:22), however, their lives have total value in themselves, not because of what they bring to me.
The notion of God creating imperfection is also very subjective. Is intellectual disability, for example, imperfection? It is certainly different. People with intellectual disability cannot do many of the things that people who do not have such a disability can. I am not one of those who denies that intellectual disability is disability. However, I am increasingly understanding intellectual disability more as difference. People can be successful in life with a wide range of ability levels. People also define success in a wide variety of ways. As a Christian, success is very antithetical to society's definition. Increasingly, I am understanding success from a Christian perspective, and I find that intellectual disability often becomes simply a difference relative to that success. It occurs to me that in his wisdom and his kindness, God sets the "success bar" at a level that is accessible to the majority of people, and simply says that to whom much is given much is expected (Luke 12:48). With that in mind, one must reexamine the notion of imperfection. If I haven't been given the intellect or opportunity to be a university professor, for example, am I imperfect? If I haven't the ability to build a wall straight, am I imperfect? If I haven't the ability to hold a family together because I cannot set the emotional tone, am I imperfect? If I haven't the ablilty to love others like a person with intellectual disabilities will often do, am I imperfect? I can choose a standard for perfection that I will succeed at and then use that as my plumb line, or I can use the plumb line that God provides for success and allign myself with that. The notion of perfect and imperfect looks quite different when I allign myself with God's notion of success or perfect.
It is funny that when I do the interviews I mentioned at the beginning, I ask one friend if he has a disability. He typically says, "I don't think so." I then ask what would a person be like if he had a disability? My intellectually disabled friend doesn't talk about wheelchairs, or blindness, or inability to do something. He says "They can't get along with other people, swear a lot and get in fights." You could put a team of experts in disability in a room for a month and they probably would never come up with that criteria as the definition of disability. But I would have to say that my intellectually disabled friend's definition is probably much closer to what God would hold out as disability, as imperfection.

Thursday, October 16, 2008

A new member of our group

This week at The Light and Power Company (our group that includes adults with various disabilities) we had a new attendee. He is a man, lets call him John, with profound intellectual and physical disabilities. John is largely non verbal, and doesn't move very much. I must tell you that I am delighted that through his father, John has decided to be a part of our group (I may be jumping the gun a bit as last week was his first week with us)! I introduced him to everyone as I typically do for anyone visiting, and asked him the question I typically ask visitors, "What do you like to do for fun?" I asked him and he didn't answer, however, his father told me that he enjoys music, so I was ready with a response for him. After introducing him, I instructed everyone to go over and introduce themselves to him and they did. John had his hand shook by perhaps 45 different people. I hope it wasn't too traumatic for him!

Over the past few days in thinking through John's presence in class, I am reminded about the story in Mark 2: 2-12 about the man lowered through the roof by his friends in order to meet Jesus, and I suppose to be healed. At least that is what I would think his friend's motivation was. Little did they know what the result of their assistance would be. "When Jesus saw their faith, he said to the paralyzed man, 'Son, your sins are forgiven.'" So they were going for healing and what they got through THEIR faith was much better...forgiveness.

This passage puts a whole new light on the presence of my new friend with profound disabilities. What will God do in his life if I and those around him are faithful? Like the friends in the story, his father had the faith to bring him to church, and ultimately to bring him to our group. In many ways, we now have the responsibilty to bring him to God through our love and acceptance of him. I am also reminded of the verse in John 9:3-5, "Neither this man nor his parents sinned. But that the Glory of God might be seen in his life, we must work the works of him who sent me." So his presence provides the opportunity within our group and wherever we are with him to have the Glory of God seen in his life. What an amazing opportunity.

I will be honest in telling you that I don't know quite how the principles described in the two stories will be fleshed out in our interactions with John, however, you can believe me that I will be watching to see how they will be worked out. I anticipate seeing him each week, and in between should the opportunity arise, and look forward to seeing how God will act in his life and ours.

One final note. A member of our group and a longtime friend, Arthur Seale, grabbed John's father as he was pushing him out in his wheelchair. Arthur said something to the effect, "Your son is welcome and wanted here. He will never be too noisy, he will never do anything that would cause him to no longer be a part of this group." I didn't say anything, but inwardly (and probably outwardly) I was beaming. Arthur nailed it. This is the message we desperately want the church to give to parents and persons with disabilities.


Wednesday, October 15, 2008

More on Special Education reforms

So this week, I have been in several classrooms. Last week, I was with a brand new teacher who had been left alone, still in her first week of teaching, with 6 high school aged students with severe to profound intellectual and physical disabilities. She asked me to stay for a few extra minutes so she could take one of the girls to the restroom while I watched the others. I think this is a rare situation at this school, but it is unacceptable nonetheless.

In another school, I discussed the focus on state standards with several teachers of severely disabled teens. One teacher indicated that the curriculum is no longer focused upon teaching functional skills that the students will need to be adults who are functioning as independently as possible. Instead, everything is so geared to preparation for the CAPA exam that students are to take a district designed preparatory exam. I am confident that those who designed it thought they were being very innovative. The problem is that the state that mandated the test is so obviously wrong so the practice test is obviously wrong. For example, questions ask severely intellectually disabled persons about noble gasses and planetary orbits which is beyond rediculous. I will tell you that to me, the California Alternative Performance Assessment or CAPA is goofy.

An alternative means of measuring student progress may be what is needed. Something that makes teachers accountable, however, is less norm, standards based. The moderate servere population is just too heterogenous to have such standards. CAPA and other assessments are futile attempts to squeeze people who do not test well on standardized assessments into them. In reality what is needed is criterion referenced assessments, that chart a students growth against his current level of performance. What is needed is for teachers to develop criterion referenced training procedures and then implement them with a data based approach. Additionally, the kinds of things that are being assessed are all to often totally irrelevant to any aspect of the student's life.

But I believe these tests are also the result of poor teaching in far too many moderate to severe disability classrooms. It could be the State's effort to make teachers accountable. I cannot tell you how many times I have visited a classroom where the children of whatever age are simply being babysitted.

I have been in a high school classroom where the lights were off because it was nap time.

I have been in a classroom with 12 profoundly disabled students and a teacher and 1 aide.

I have been in classrooms where 20 minutes of the 6 hour instructional day was spent on IEP objectives.

I have been in classrooms where each student only has 1 or 2 IEP objectives.

I have been in classrooms where students are spending their instructional day in front of the television.

I have been in classrooms severely disabled students literally sit for hours with no interaction from anyone.

And so on and so on.

If I am the teacher's supervisor, these things stop immediately, to the degree I am able to get a teacher to change. But you don't have to look too far to see low expectations, activity based babysitting going on in public schools.

In two classrooms I was in over the past two weeks, there were also two students who were characterized as behavior problems. However, when I worked with the students, and then the teachers followed up with those same students, many of the behavior problems went away. I will never forget the words of one of my student teachers many years ago. She naively observed, "When I made the curriculum interesting, the behavior problems went away!" It is true for students of any age. I think I related how I was working with a young man with severe disabilities in a classroom, who followed me to the door, signing as I was leaving, "More work. More work." It broke my heart.

In another school, I watched as instructional aides took students out to the playground. I then entered a classroom. When I came back outside, I counted the aides. There were 12 on the playground, 9 of which were sitting around picnic tables in the shade, 2 who were kind of walking around monitoring things and another standing and watching. In other words, there was NO interaction between the aides and the students, none of the aides were participating in games or play with the students and all this was occurring in a large grassy playground area in the center of the school where anyone could see what was happening. This is a high priced private school for students with severe disabilities.

It is so sad.

Then I found out this week that one of the teachers that I have trained, one that I took particular interest in has become something of a slacker. I know that she knows what is right, what she should do in her classroom. But she has succombed to the pressure to be incompetent, to do little or nothing. It is funny, because to a significant degree, if you do what your district wants you to do as a moderate to severe disabiltiy teacher, you will not be doing what is in the best interests of your students. If you judge your performance on the evaluation by your principal, that may not be the correct standard as your principal may know nothing.

I am always appealing to my students.

You have a responsibility to expect the best from your students.

You have a responsibility to demonstrate how to interact with severely disabled people.

You must be accountable for the instruction that goes on in your classroom.

You cannot give in to the pressure to be marginal.

But they sometimes do anyway.


Wednesday, October 08, 2008

They like Gospel music

I was going through some of the materials from the IASSID conference I attended in Cape Town South Africa and ran across notes from a session entitled, "Autism in Africa" by Dr. F. Njenga, a Kikuyu elder and psychiatrist. He was interesting and funny. However, one comment he made I thought was fun and stuck with me. In his research on autism he noted that, as a characteristic of people with autism, that they like "listening to Gospel music." Really! It was presented as a characteristic of the people with autism that he studied in his research.

Now I haven't the foggiest idea why the people he studied had this characteristic. Perhaps it was the only music they had access to, perhaps the only recorded music, or maybe there was something about the music that they particularly liked. Whatever it was, how cool that there is that input being made into the lives of these persons. I am reminded of the Isaiah 55:11 passage which says,

11 so is my word that goes out from my mouth:
It will not return to me empty,
but will accomplish what I desire
and achieve the purpose for which I sent it.
(Today's New International Version)

As I say, I don't know why this is a characteristic, however, the fact that it is, is encouraging.

It has long been my desire that a characteristic of persons with intellectual disabilities would be that they are church attenders. That is my desire for a variety of reasons; for the benefit they would enjoy from attending church, for the benefit the church would enjoy by having such individuals in their midst.


Friday, October 03, 2008

Special education needs reform

I was visiting a local California high school today, and for some reason something I observed just set me off.  It was like the last straw.  An adult man, I assume he was an instructional assistant, was walking a high school student with severe disabilities by the arm, holding him as if he would run away, while he was talking on a cell phone.  I got really angry.  He wasn't talking to the boy, or interacting in any way.  The boy was NOT being treated as a human being but like a nonentity who he was just dragging around.  How can we possibly tolerate this?

But this type of thing is all too common in special education.  
Bear with me while I rant a bit...

People talk a good game, but you don't see it when the rubber hits the road.  Either they are evil or they are slackers.  I recognize that you have to choose your battles.  I literally take a half hour of every class I teach and talk about what is worth loosing your job over, because when you get into the system, it may come down to that if you are going to fight for justice in the public schools or other state agencies.  You know, in this political season, ask people who are dependent upon government services how things are going in terms of receiving those services.  I can tell you for them that it is largely a battle every step of the way.  And now we want to turn health care over to the government?  Ask people how it is to go through the government for adoption.  Ask people how it is to go through the government for disability services.  In nearly every case it is a nightmare.  Let me tell you a little about special ed, and think about whether you would want the government controlling any area of your life.

In special ed, it starts with IEPs, individual education programs which are largely incomprehensible.  They make no sense to anyone, but are signed by teachers, special education teachers, principals, school psychologists, speech therapists, and parents.  I don't fault the parents, but I do fault all the rest.  Recently I advocated for a friend's son at an IEP.  The teacher went through each of the objectives read and commented upon them.  I then spoke up and asked, "Can anyone here tell me what any of these objectives mean?"  The answer was that none of them could!  There wasn't even a fight.  I typically have teachers I am training bring IEPs of their students to class, ones that the inherited and they are largely, I would guess 70% of the objectives are nonsensical.  You would have no clear idea of what is to be taught, how it is to be evaluated, and whether or not the student achieved the objective.  Other objectives talk about what the teacher will do, like place a student in a stander for 20 minutes.  So the objective is basically met as soon as it is written.  There are typically not enough objectives written.  For many students with severe objectives, the objectives which should fill an instructional day are limited to 3 and are things like, will swallow, will not hit his neighbor, and will tolerate being touched.  That is so lame.  Teachers who write such objectives should be at best ashamed of themselves and at worst sued for malpractice.

Then we have state leaders who must be clueless, writing objectives and developing standard based assessments for students with severe disabilities.  So I have gone into classes where teachers are teaching severely disabled students, people who cannot read, or do basic mathematics, or perhaps even take care of their personal hygiene very well, about the orbits of the planets, or the atomic weight of gold.  I was literally in a class where one severely disabled student stood still while the others walked around him so they could learn about orbits.  Who are we fooling with such nonsense.  And the fact that such standards are being mandated by the state, in my case California, is nonsense.  But why are there such standards?  Partly it is a political battle, and neither democrats or republicans are going to get all students to grade level, the fact that they think they might tells you how foolish they are.  But it is also due to the fact that too many teachers are slackers.  There is great pressure in the public schools for teachers of students with severe disabilities to be simply baby sitters. It is interesting that in one of the reauthorizations of the IDEA act (individuals with disabilities education act) that the law states that if teachers are not writing goals about specified areas, they need to write why they are not writing goals in specified areas.  Doesn't that sound like rules to prevent someone from being a slacker? 

Then, school districts literally work, I have come to believe, to frustrate parents.  I know of one district in my area who basically has a person who goes to meeting to NOT give parents what they may want.  In another district, I was told by a program specialist that the state of the art classroom for autistic children is reserved only for children of parents who threaten to go to fair hearing.  Otherwise the students are given what the district admits by the practice is a substandard education.  Other districts do not provide translators unless the families request them, which takes a lot of guts if you do not speak the majority language, or provide translators who are instructional aides not paid to do so.  

Educational decisions are largely NOT made on pedagogy.  They are all too often based upon administrative convenience.  What is the cheapest way to go, how can we do what we always do without changing it, and so on.  I was in an IEP once where a child had worked his way out of being in a classroom for emotionally disturbed children.  At the close of the meeting, the administrator said, "We have no regular education placement, so he will have to stay in the emotionally disturbed class for 4 more months."  "Then, I will not sign the IEP" I said.  "This child has worked to get out of special ed, has been successful, but you are not going to move him because it is inconvenient for you? NO WAY. " And because I spoke up, he was place in a general ed class the following week.

Then there is little or no accountability within special education for the programs offered.  If a child doesn't learn, doesn't progress, the assumption is that it is his fault.  If we really expected that a child would improve, we would ensure that the instructional program we were offering was working.  That implies taking instructional data, which most teachers do not do.  At the same IEP that I mentioned above where I advocated for my friend's son, the district self righteously read through their program and would not be interrupted for questions.  When I was finally permitted to ask questions, I said, 
"Please read objective #1."  
Objective is read.
"Has any data been taken on this objective?"  
"So you really have no idea where the student is performing on this objective do you?"
No response.
"Please read objective #2."
Objective 2 read.
"Has any data been taken on this objective?"  
"So you really have no idea where the student is performing on this objective do you?"
No response.
"Please read objective #3."
Objective is read.
"Has any data been taken on this objective?"  
"So you really have no idea where the student is performing on this objective do you?"
No response.
I stopped after objective 4, but could have gone on.  There is little or no accountability for what we are doing in special education.  The IEP process has largely become a joke.

Another note on the IEP, they typically take an hour or so.  So we have to hurry.  That is, unless you have someone like myself there who knows the rules, and then the IEP can go on for as long as it takes to get a good result.  But without someone in the know, people are bullied into getting a result quickly.

Do you know that at the IEP the parent is the most powerful person in the room?  In another IEP, a speech pathologist who was very impressed with herself, was pushing the parents with her desire to teach sign language to their autistic son.  The parents said they didn't really want to teach sign language to their son.  She pushed again.  The parents less confidently replied again. She went on as if they hadn't said anything.  I finally spoke up.  "The parents have indicated that they do not want to have their son taught sign language.  We do not want to hear about sign language any more and your objective about sign language is dead."  That was the end of it because that is the level of power the parent has at the IEP.  Their only recourse is to take it to the next level, a fair hearing, and I can tell you that school districts do not want to do that.

Then I met with a teacher who was reprimanded because she didn't have the goals and objectives written into the form prior to the meeting.  You see, we are supposed to have goals in mind before the meeting, goals that we share with the family, but we tweak and finalize those goals at the meeting.  The idea is that parents have input and are not bowled over by a bunch of professionals.  But it doesn't happen that way.  Why? Probably because it takes too long to write the goals on the form at the meeting.

Then there is the revolving door of instructional assistants.  Do you know that one of the most critical aspects of an instructional program for students with severe disabilities is consistency?  Do you know that a characteristic of students with autism is that they need consistency?  But aides are moved through classrooms as if their presence or nonpresence, their skill level, whether or not they have already been trained by the teacher are all irrelevant.  Nothing could be further from the truth.  

So the system needs reform.  I try to do the best I can with the teachers I train.  I tell them that there will be great pressure on them to not reflect the best practices that I train them in.  I tell them that they will be told that what they learn in university is all just ivory tower stuff and not reality.  I tell them there will be great pressure on them to be mediocre.  I tell them they have been trained to be experts and they need to act like the experts.  Administrators do not typically know much of anything about special education.  I know that because professors who are friends of mine who train those people tell me that it is so.  I know that school psychologists know little about how to actually educate students with severe disabilities.  I know that because people who train school psychologists have told me so, and I have been in enough IEP meetings with them to understand that fact.  I was told once by a school psychologist to not request counseling for a emotionally disturbed child because it would cost too much.  One of my students was the one told not to offer a translator for exclusively Spanish speaking parents unless they requested it.  

If you are an administrator or a school psychologist and you are offended by these remarks, then do something about it.  Change the perception.  Run IEP's as they are supposed to be run.  Don't do things for administrative convenience reasons.  Provide access to the best programs because it is the right thing to do pedagogically for the child.  Demand excellence from your special education teachers, particularly those working with students with severe disabilities.  Ask yourself whether IEP objectives make absolute sense, and ask parents if they make sense to them.  If teachers cannot be accountable for student performance because they have not been taking data, call them on it.  "I don't want to see you go into another IEP without graphs of data on every IEP objective, and if you don't understand an IEP objective, for goodness sake speak up!"

It breaks my heart when I visit the class of a teacher who has graduated from a program of which I was a part, and has been teaching for several years, and has become like the mold pressures them to become.  It takes a real backbone to be a good special education teacher as you are not only trying to get past the disabling condition to provide the best education for the student, you are fighting the district to get appropriate services and materials.  I can tell you of teachers of students with severe disabilities who were literally placed in their classroom with NOTHING! No materials whatsoever.  They were then expected to purchase the materials with their own resources, or to fight to get reimbursed the $300 dollars for the year that was allocated to the district.

When parents come to you and are pissed off, there is a reason why, and it is not simply because they are unreasonable parents.  Look at the system you are a part of from their perspective.  A light came on for me when I realized I was basically the DMV or the IRS to parents.  It totally changed my perception of them, and the way that I did business.

More to come.

Tuesday, September 30, 2008

Great Expectations

I am often in situations where people with intellectual disabilities and those without who are their teachers, their care providers, their family members are together. Sometimes it is a theraputic or educational situation and other times just typical life situations. It also seems, that those with the disability perform, to a certain extent, in accordance with the expectations of those they are with. So...
If they are treated as a child, they act as a child.
If they are treated as an adult, they act like an adult.

If they are treated as if they can't learn anything, they don't learn anything.
If they are treated with the expectation that they will learn, they do learn.

If they are treated as people who are just intellectually disabled, they act as such.
If they are treated as people who think, have opinions and are capable of thinking deeply they do.

I make concerted efforts, when I am instructing people who have intellectual disabilities, to try to stretch them, particularly if I am talking about spiritual things. I am always impressed how they will raise to the level of the discussion. They will often try to take what I am saying and translate it into a direct application to their lives. "So you are saying that I shouldn't listen when somebody tells me to ..." they will say. One gal I know who has down's syndrome, will pause after you ask her a question, and often give profound insights. Too often, however, she is not given the opportunity to do so because the people around her think her pause a lack of understanding, and their limited expectations cause them to be impatient.

I believe I have shared this here before, but I have a friend who has severe intellectual disabilities, lets call him Fred. Fred would try to get my attention by nagging me with a question, the same question over and over again. Finally, one day, he asked me for a dollar. That got me to stop and pay attention to him for a minute. He learned that he could get me to stop by asking me for a dollar. Well many dollars have changed hands over the years, but at some point I stopped and began to have a conversation with him. I expected him to be able to converse with me on a variety of topics. At first our discussions revolved around his original repetitive question and asking for a dollar, but grew to discussion of his desire to marry his teacher, and his brother who lives in Hawaii, and his interest in baseball, and his favorite foods and so forth. When I treated him as a real human being who would communicate with me on a variety of topics, he rose to the occasion. Had I continued in my interactions with him where I basically ignored him, he would have remained something quite less than what he was capable of.

So I have learned to try hard to raise my expectations of people, independent of their level of disability. Too often their low performance is due to what I do as the person who is in control of the social situation. It is the result of mistaken notions of the limitation of the person with disabilities.


Disability Studies MA mentioned in Christianity Today

In an editorial entitled Surprised by disability by Al Hsu Christianity Today magazine makes mention of the new, entirely online, MA degree in Disability Studies at California Baptist University. It is exciting for those of us who have worked to develop this degree to have it noted in Christianity Today.

If you are interested in this online degree program, you can find more information about it at http://calbaptist.edu/disabilitystudies and/or you can email me, Jeff McNair at jmcnair@calbaptist.edu

We are accepting students to the program for January of 2009, just 3 months away, so contact me and we can get you an application!

God bless!

Wednesday, September 24, 2008

Us becoming like Them

I have had a bit of a revelation in the last few weeks. I finished writing an article that has a great title. It is called, "The indispensable nature of persons with intellectual disabilities to the church." It should be coming out in the next few months in the Journal of Religion, Disability and Health. Anyway, as often happens when you submit an article, it was sent back to me with some questions, and suggestions for changes both of which need to be addressed if the article is to be published.

As I was working through the revisions, an idea hit me. In an integrated setting where people with and without intellectual disabilities are together, you obviously have two different groups in interaction with each other: those with intellectual disabilities and those without intellectual disabilities. Now those without intellectual disabilities have the ability to learn social skills, and to pretty much reflect what might be called nondisabled society. In contrast, those with intellectual disabilities may not understand social skills and therefore do not reflect nondisabled society. So for example, research indicates that people with disabilities loose their jobs most frequently because of minor social skill deficits. But I also note that my friends with ID have a very different perspective on disability. They may not see themselves as disabled, and may not regard others with disabilities like their own or even more severe, as disabled. I find that they typically just see others as people.

I have one friend with ID who says that a person with a disability is someone who can't get along with other people and gets into fights. So when I ask him whether he knows someone who has a disability, even though I know that he knows people who use wheelchairs or walkers and have severe ID to the point of being nonverbal, he comes back to his definition and tries to think of someone who is difficult to get along with.

But getting back to my point, as I am spending time with friends with intellectual disabilty, I find that I have the ability to change in a variety of ways while they don't always have the ability to change. So, in order for there to be social interactions with them, I have to change. Actually (and this was my revelation), I think that I become more like them, I become more like my intellectually disabled friends. Specifically,
    • I don't worry so much about social skills and their are few things someone might do, socially, that would shock or alarm me. I become like them in that way.
    • I begin to see people as people whether or not they have a disability. They are not characterized in my mind as my friends and my disabled friends. I become like them in that way.
    • They are very forgiving of others who are unkind to them. Hopefully I become like them in that way.
    • I will also say, unapologetically, that they are more loving toward others than I often am. Hopefully I become like them in that way.

These and other changes are not forced on me in any kind of willful acts on their part. It just kind of becomes the rules of the game if I am going to be able to interact with them. So they change me/I become more like them. In order for the enviornment to soften to include them, there is a level at which the enviornment becomes like them.

In the words of the title of my article, the indispensable nature is at least partly the positive ways that I become like them as a result of being with them.


Tuesday, September 23, 2008

How far have we come?

I recently received an article from my mother, a resident of Minnesota, that was entitled State facility improperly handcuffed retarded residents.  The article tells of persons with intellectual disabilities being handcuffed for such offenses as, "touching a pizza box, spitting and going outside without a coat."  The article also relates, "The staff said restraints were the only way to manage the often-difficult residents who are temporarily committed tot he 48 bed facility by the courts."  

This story apparently has come to light because of Roberta Opheim.  The article says "she took the unusual step of publicly chastising the facility to reduce the chances of such abuses from occurring again."  Thanks be to Ms. Opheim.  I am confident she received political heat for her decision.

The article also says, "When family members and guardians complained or demanded that restraints not be used, the staff threatened retaliation by limiting visiting times and withholding information, the report said."  Rick Amado is quoted as saying, the staff members "are not bad people...They can become frustrated, they cannot allow one resident to hurt another."  To me, those two characterizations do not go together.  Staff who threaten retaliation when families and guardians want justice are bad people.

The article goes on to say that "Opheim noted that budget cuts in recent years have sharply reduced the amount of resources for staff training..."  I see the results of limited staff training myself, although not as severe.  For example, a local group home took a bunch of intellectually disabled adults on a walk through their neighborhood in their pajamas.  Why?  Because it was 6pm, the residents were already in their pj's and needed to get out a bit.  It would be too difficult to change them back into street clothing for the walk.  This is the kind of thinking that occurs among people who often work with individuals with disabilities.  I do not mean to equate being handcuffed with being paraded around the community in your pj's but the observation is that both have received poor training.  Should a man be walking around the community by himself in his pj's he might experience repercussions for his behavior.  However, I am supposed to participate if those who are "in charge" of me parade me around.

I would like to say that these types of things do not occur in the United States, but I know they do.  Typically they are hidden which is why Ms. Opheim should be credited for bringing them to light.  Chances her efforts will cause others to examine the practices they are aware of and bring them to light.


Monday, September 22, 2008

A real life metaphor

This past week in church, my pastor, Dr. Gary Inrig, related the story of a man who saved his son who had fallen into a septic tank.  The story might not typically get someone's notice except for the fact that the adult son who fell into the septic tank was a man with down's syndrome and the man who saved his son, sacrificed his own life so that his son could live (see Washington Post story here).  Thomas Vander Woude apparently held his son's head above the sewage water by somehow holding him on his shoulders or in some other way holding him up, while sacrificing his own life in the process.  

My pastor used this story as a beautiful illustration of Christ coming to Earth (diving into a septic tank) in order to save those who were there, and ultimately sacrificing His own life to save ours.  I will allow you to fill in the blanks relative to other aspects of the metaphor.  But I was thinking more about the value this father put on the life of his son with down's syndrome.

At the moment it is reported that 90% of children who are prenatally diagnosed as having down's syndrome are aborted.  Without getting political, that is one reason that Gov. Sarah Palin's decision to give birth to her son with down's syndrome is actually quite remarkable.  By that act, she places herself among the 10% of other women who were in that position and chose life.

But even more interesting, more worthy of consideration is that here is a man who after 20 years with a son with down's syndrome saw his son's life as important enough that he would sacrifice his own life so that his son could live.  It is a very powerful example to people who would make "decisions" about the lives of others, when they know little or nothing about those lives.  I am not just talking about parents, but more those in the medical profession and those in pro-choice organizations both of whom probably have never had a cup of coffee with a person with down's syndrome, or watched a ball game with someone to get to know them as persons.  However, doctors may be quick to advocate for the prevention of their lives through abortion.  If people really want to understand what disability is, they need to get with people with disabilities themselves as well as with people like parents and friends who really know them well.


Saturday, September 20, 2008

Teacher interactions with parents of children with disabilities

I recently had the opportunity to do an inservice for a local public school. The school called me to speak to the teachers who were feeling discouraged and beaten up by parents of their students, largely early elementary age, who had disabilities. As I was reflecting on what I would say to the teachers, my mind went to Micah 6:8 one my most favorite verses. The school was not a Christian school, but I told them they invited a Christian college professor to speak to them, and I was going to base my comments on a Bible verse.

"In your interactions with parents," I said, "your standard should be to do justly, love mercy, and walk humbly." Let me repeat a bit of that advice here.

As a teacher you need to do justly, which although it might sound easy, is not. I always tell the new teachers that I work with that you need to think about what you are willing to loose your job over. I had dinner with some friends last night, who are also professionals in special education who told me that they know of a local district who literally have a staff person who's main responsibility is to not give parents what they are after in terms of programming for their children. I was speaking to a program specialist, a person who supervises and assists special education teachers, and an old student of mine, who told me that in her district, the have a special program which is state of the art for children with autism. However, you cannot get your child those services unless you threaten to go to "fair hearing" which is kind of like taking the negotiations for a child with disabilities' educational program into the legal system. In these and other cases, school districts are frustrating the doing of justice. You don't need to talk to many parents to find out how difficult it is to get the services you are supposed to get, from the state. You have to fight. As a teacher, you should not be on the side of those who frustrate parents. You should not be only and always on the side of parents. You need to be on the side of justice as best as you can understand it. And yes, there are things worth losing your job over.

As a teacher you should also love mercy. Parents of children with disabilities are "wounded" in similar ways to which persons with disabilities are wounded. See this blog entry for more on wounding. Because people are wounded, they can be sensitive, hostile, aggressive. However, when I approach a situation where I remember that I am the professional in the situation, and I remember that those with whom I am interacting are wounded, and I know what I know about issues of justice described above it should cause mercy to well up in me. I approach people differently when I realize they are in the need of mercy.

Finally, I need to walk humbly. As teacher, as a professional, my problem may be that I think I know more than I actually do. I can be too quick to minimize parent input, or vilify parents, or just do a lot of blaming. But more than just about anything, as a teacher I need to walk humbly. I need to recognize my limitations, recognize the exceeding importance of parents and family in the life of a child with a disaiblity. I need to recognize that I represent the State, and as such a representative, I am not always on the just side of the argument about services. I have sat in on IEP meetings where haughty, self-impressed professionals bully parents. I cannot be one of those people. I need to be humble in my interactions with all people, but in particular as a professional in interactions with parents, children and families.


Tuesday, September 16, 2008

Typical experiences

In his discussion of the wounding experienced by persons with disabilities, Dr. Wolf Wolfensberger relates that often, particularly people with intellectual disabilities do not have the experiences typical of people in their culture.  So in the US, for example, I have known adults with intellectual disabilities who had never been to a restaurant before.  I actually had the delight of taking a few friends to their first restaurant when I found they had  never been to one.  Being in Southern California, we have found that many people have never been to the beach, or up in the snow when the mountains are white in the Winter.  But recently in our group at church, I have discovered a few other examples.

People enjoy hearing about other people's trips to exotic places.  Most persons with intellectual disabilities don't get to hear about people living or traveling to Africa, for example, because they do not have people who are making such travels in their social networks.  Therefore the simple experience of someone going on a trip, coming home, and then sharing pictures is something that may have never experienced.  

This past week, the women of our group sponsored a wedding shower for another woman who participates in our group.  I wonder how many wedding showers the typical adult with intellectual disabilities participates in in her lifetime?  Kathi told me that it was a delightful time where gifts were carefully selected and presented with pride and anticipation, and received with sincere thanks.  What a wonderful memory for the future bride and all those who participated in her shower.  The men of the group also teased about the shower as a "chick" occasion as men do which is actually a part of the fun of whole experience.

How wonderful to be able to enrich lives of people who through no fault of their own miss out on typical things that are part of the lives of those who do not have an intellectual disability.  


Sunday, September 14, 2008

Softening the environment

For many years, I have thought that a critical factor in the integration of persons with intellectual disabilities into the community is the "softening of the environment" toward those individuals. That is, the environment needs to
  • soften in its social skill demands,
  • be more open to differences in people to some extent not even really seeing disability,
  • needs to be more friendly and more loving,
  • needs to become less indivualistic and more open to interdependence among people.
Well it seems that what we are actually saying when we say that the enviornment needs to be softened, is that the enviornment needs to become more like people with intellectual disabilities who
  • do not make high social skill demands of others,
  • are more open to differences in people to the point of not even seeing disability,
  • tend to be friendly and loving,
  • and perhaps due to their disability are less independent and more dependent or interdependent.
In considering relationships with persons, particularly adults with intellectual disabilities, because they are often unable to change, to improve in areas such as social skills, those without intellectual disabilities have the option to soften, ultimately accepting others in spite of their "shortcomings" or rejecting them. The accepting, the softening, it seems to me, is actually me becoming more like them. As I grow as a human being, I reflect many of the characteristics I observe in people with intellectual disabilities who are around me. I become more like them as I begin to understand that we are really all the same. My resistance to change, my reisistance to softening illustrates the degree to which I do not believe people are all the same. My embracing and insistance on social standards (I am not talking about standards in terms of evil) when people are unable to meet those standards (think social skills, for example) hardens me and makes me brittle such that I can never really see others with intellectual disabilities as the same as me.


Wednesday, September 10, 2008

Compartmentalizing disability

I am a person who became interested in persons with disabilities, particularly intellectual disabilities because of the way they drew me in, accepted and loved me when I was a college freshman.  As a result of that group of adults back in 1974 with whom I just played basketball, or soccer or whatever else they wanted to do when we met on Friday nights, I have now spent over 30 years working to educate people with similar disabilities, working to educate those who educate them, and working to see they are full members of the community including the local Christian church.  I have no family members who are disabled so that my involvement with people with disabilities has been a choice on my part.  In contrast, many people that I know have had the life experience of disability thrust upon them by virtue of having a disability themselves or being the family member of a person with a disability.

But even in the best of situations, because my involvement is a choice, it can result in a kind of compartmentalizing of disability.  I have the luxury of compartmentalizing my life, such that I am able to include or not include with people with disabilities in my life.  In that regard, I am probably a part of the majority of people.  I started to think about that idea of compartmentalizing disability.

For myself, I visit friends at a group home once per week. I involve myself with people at church every Sunday and at times when there are other events (which is pretty often). But it occurred to me that my "disabled life" occurs largely on Wednesdays and Sundays for about 7 hours a week. Often I talk with friends on the phone and other times we meet together just as friends do. With effort I get together for coffee once a month with friends, sometimes initiated by me and sometimes initiated by my friends, and I try to help people with problems as they arise. I understand that many people, particularly parents and people with disabilities themselves cannot compartmentalize which is a huge difference between them and myself.  I can become unavailable if I want to for some reason, they must always be available.  Groups attempt to provide respite care for parents such that they can explore other aspects of their lives, but even when they are benefiting from respite, they are still "on call" such that they are only physically absent for a brief while.

The question I have for myself is, how can I reduce the compartmentalization of my life in relation to people with disability?  I have tried to make myself available in the midst of a busy work schedule and phone calls help to blend aspects of my life together.  But I struggle with how, short of adopting a person with a disability, or having some with disability living in my home, I can live a more integrated life.  I am not foolish enough to think or imply that life with disability is in any way easy, although I have learned that people do become accustomed, become used to their lives as they are lived.

I also wonder, at times, whether life with people who are intellectually disabled, when it is a choice because they are disabled, is little more than philanthropy? That implies a one way street in the definition of inclusiveness. I think that perception is the reason why many efforts to facilitate inclusive programs fail.  Those without disability may see it as all giving on their part.  They don't see the involvement as mutually beneficial.  Until they do, efforts at inclusion are destined to live or die on the basis of philanthropy.

For myself, my efforts to break down the compartmentalization of disability in my own life are in part based upon philanthropy, I must admit, however I also have other motivations.  I meet with my friends because they are truly my friends.  I laugh with all of my friends, I am interested in what they are doing, I enjoy being with them, they enjoy being with me.  When I am away from all of my friends I think about them.  When I am away from friends I worry about issues I know they are facing in their lives.  I try to defend them when I perceive them being threatened.  I guess I recognize the impact all of my friends have made on my life and that is the reason why I don't want to compartmentalize them, but want our lives to blend.  I freely commit myself to relationship like I do to any relationship and that commitment makes demands on me which I also freely embrace.  At least that is what I hope to attain.  It results in a blurring of the lines between characteristics of people.  I see this blurring through the eyes of my intellectually disabled friends in the way they see people with and without disabilities and it is a very refreshing characteristic that I hope to learn.


The moral "where with all"

While in Cape Town at the IASSID conference, I attended two presentation relative to personhood of people with disabilities, in particular intellectual disabilities. One presenter quoted Dr. Hans Reinders using the phrase "precarious personhood." It is a good phrase, pointing to the tenuous nature of the lives of many people around the world.

A second presenter used the phrase "traditional moral philosophy" as kind of the point of appeal for personhood, implying that traditional moral philosophy will bring us to the awakening we need to love our brothers and sisters in spite of their perceived, negative, personal characteristics. I felt like she was Peter Pan asking me to throw myself out the window because she says I can fly. I raised the question, "If just about everywhere in the world, pretty much forever, people have been excluded on the basis of their disability, to what traditional moral philosophy are you appealing? Our traditions have failed us at every turn. Our secular and at times religiously informed moral values have been traditionally unhelpful and problematic. To imply otherwise is to evidence an intellectual disability. You are therefore appealing to a morality that is basically not present." Strangely, she agreed.

Such morality is not present in the majority of parents until a child with a disability is born to them and even then not always so. It is not present in schools where special education teachers force inclusion on children but do not live lives inclusive of their own peers with intellectual disabilities. Our only hope is to appeal to settings where the morality we desire is present although perhaps dormant in many situations like the Christian church. We have the opportunity to lead the way in the development of values that will value people with disabilities. In many ways it is not natural for societies to have such values...they must be taught. Or better yet, they must be modeled by us for society because we as Christians can at times talk a good game, but can't back it up. At least not yet, and for sure not universally. Pockets of brilliance do not an argument make, however, but as the pockets grow, more will want to reflect what they see.


Tuesday, September 09, 2008

IASSID Religion and Spirituality Division

One of the reasons for my trip to South Africa, was to assist in the development of a special interest group of IASSID (International Association for the Scientific Study of Intellectual Disability).  Led by Bill Gaventa, about 20 of us met to discuss the possibility of this group.  We had people from Tanzania, South Africa, United States, Belgium, United Kingdom, Finland, Australia and the Netherlands (perhaps more!).  It was a great first meeting where we had the opportunity to meet and hear about what others around the world were involved in relative to spirituality. 

There was also a religion and spirituality presentation track where 6 papers were delivered, 4 from the US, one from Netherlands and one from UK.  I presented a paper on Christian social constructions of disability, and one on The indispensable nature of persons with intellectual disabilities to the church.  The sessions were well attended and the presentations well received with lively questions and answers afterwards.  It was interesting to hear reactions to the levels of church attendance in the US.  I reported the Princeton Religion Research figures of about 40% attending church in the last seven days, and research about adults with intellectual disabilities attending at about a 50% rate which comes from several research studies.  People were very surprised at the attendance figures, particularly people from Australia and the UK where church attendance is apparently very low.

Unfortunately, there were not a lot of people who represented religious perspectives other than Christianity, so we didn't have the benefit of hearing from those folks.  Hopefully that will change in the future.

Should you be interested in becoming a part of this new international group, go to the IASSID website, register as a member, and then email me and I can tell you how to proceed.



At the IASSID conference in South Africa, I attended a session by a researcher from the UK.  The woman was doing research on attitudes towards children with disabilities, and particularly toward their mothers in some of the more remote, tribal areas of Africa.  Among the tribe she studied, there is the perception that a woman has a child with a disability because of something wrong she has done.  She has "sinned" in some way and the result is that the spirits have given her a child with a disability as a punishment.  The researchers, recognizing how important the relationship is between mother and child in the development of children with intellectual disabilities, wondered whether there could be a way within the tribal system that the perceived "sin" of the mother could be "forgiven" such that a better relationship might be fostered with the child and with the community for that matter.  They facilitated mothers going through rituals with the tribal leaders/healers that cost lots of money and took many months, but in the end, the mothers were "forgiven" of their supposed "sin" that led to the birth of their child.  This ritual resulted, according to the researchers, in better relationships between mother and child as the mother no longer felt the disdain of the society (she was "forgiven") nor her own guilt for something that she had been taught that she must have done (but probably had little idea of what it might be).

Lest you laugh off this account as you look at it through your western eyes, women, families in the West, in the US for goodness sakes often face the same kinds of perceptions as was evidenced in tribal Africa.  Research indicates that families, in particular mothers, will question God at the birth of a child with a disability wondering "What did I do to deserve this?"  The fact that this question is even typically in their mindset illustrates that it is a part of how our society thinks about disability and the birth of a child with a disability.  Somehow this social construction seems somewhat universal.  Unfortunately, it has at times also been reinforced by various societal groups, including to a greater or lesser extant, Christian churches.  Because this notion is such a basic part of our psyche, and because the Bible does not support such a notion, we as Christians must go out of our way to fight such an understanding of disability.  To paraphrase a colleague of mine, Dr. Jeff Mooney,  if we really had a good understanding of what sin is, and sin truly was the cause of disability, then all of our children should be disabled.

There is a ministry of mercy that the church and Christians can play in the lives of families, particularly mothers and fathers of children with disabilities.  That is, that as the opportunity arises we refute claims about a parent's sin being the reason for a disability.  We don't provide some silly, syrupy notion of God looking down and choosing families to have a disabled child, however, we do support that disability is in some way a part of God's plan for human beings.  The child with down's syndrome is not someone who somehow escaped God's notice and was born with an extra chromosome.  In many ways, such children are part of God's plan for people. 

Now obviously there are things a parent, particularly a mother can do, like drink excessively during pregnancy, that can lead to a disability in their child.  What I am talking about, however, is the birth of a child with down's syndrome, for example and other similar disabilities.  Not that we should criticize the mother of a child with fetal alcohol syndrome, but rather that the healing process in that mother's life is very different from that of a mother of a child with down's syndrome, for example.

Because disability is or has taken on such a negative perception, people assume there must be some form of evil behind it, and wrongly and unfortunately, the evil is usually placed a the feet of the mother.  It is interesting to note, for example, that when autism was first described, its cause was said to be due to "icebox parents."  Once again, it was believed that it was unloving parents who had children with autism.  Nothing could be further from the truth, however, because of the notion once again of sin linked with disability, even 1940's researchers would make the connection between the two.

Another of the researchers at the IASSID conference was from Iceland.  Interestingly, she noted that in Iceland the divorce rate among parents of children with disabilities was LESS than that of couples who did not have a disabled child.  This is quite a statistic.  With supports, parents can see the birth of a child with a disability in a totally different manner.  Supports can be provided that may actually make the family unit stronger rather than weaker.  I suspect a lot of this strength is related to the manner in which disability is perceived, or people are taught over time to perceive the birth of a child with a disability.

That is my prayer for the Christian church.  I pray for the day that parents of children with disabilities are drawn to the church because of the support they will feel there.  That the response to the birth of a child with a disability is not "I must have sinned" but "I need to go to a church where they will love, understand and support me."  That people, Christian or otherwise, would intrinsically link disability and church.  If we were really supporting people with disabilities and their families, the community witness would be irrefutable.  It would also go a long way in refuting the socially constructed link between disability and sin.


Friday, September 05, 2008

South Africa: So what do you do?

After visiting Cape Town, South Africa, I have been trying to integrate and understand many of the experiences I had there. I think the time could be reflected upon in reference to 1) the incredible natural beauty of the place, 2) the wonderful IASSID conference at which I met dozens of people working for persons with intellectual disabilities from many countries, and made some new friends, I think, and 3) my eye opening interactions with average people, as I spent many hours just walking around the streets of Cape Town, talking to merchants, security guards, cab drivers and the many people who were begging on the street. It was through these interactions that I got to know many black Africans living there. To a person, they were friendly and a delight to talk to. I found I could get them to open up a bit (although it didn't take much effort to get them to open up) if I would ask them where they were originally from, as Cape Town seems to be a kind of magnet for people from all over Africa who are looking for a better life. As a backdrop, these experiences were then also impacted by the reading each evening of Nelson Mandella's Long Walk to Freedom, which is basically his autobiography, and an insight into apartheid in 20th century South Africa and its ultimate reform. It was interesting to read that entire book while I was in South Africa. I want to comment on it in a separate entry.

My time with average, South African citizens caused me to write a poem that I called, So what do you do? that I provide at this link. Each of the stanzas relates to specific or general incidents I had, interacting with specific people. I am not a poet, but it has been helpful to write it as a way of trying to comprehend and make sense of the experiences you will see related in the poem. I will tell you that the trip kinda "rocked my world" a bit.

More on disability issues forthcoming.


Saturday, August 23, 2008

Hello from Cape Town!

Well, for the next week or so, I am in Cape Town South Africa at the International Association for the Scientific Study of Intellectual Disability. I am doing 3 presentations, 2 related to church and disability issues. I am also hoping to be involved in the start up of a division of the organization devoted to issues of church and disability. I can tell you that after 24 hours here, I have only seen one disabled man, who I gave my change to, walking on crutches. I am very excited to meet Africans and learn about disability here.

So, should you make a comment and I am a bit slow in posting it, please be patient. I will share more of my experiences here later.


Sunday, August 17, 2008

Beginning traditions

While working on a brief article for the the American Association on Intellectual and Developmental Disability's Religion and Spirituality division newsletter, it occurred to me that we, as the Christian church in the world, are in the position of beginning traditions relative to the place of persons with disabilities within the church. To date, our traditions have been largely exclusive and ignoring as if there were few if any people with, for example, intellectual disabilities. However, as we begin to move into a new time of inclusive practices that will literally change many aspects of the way we do church, I think it is important to consider how we are informing the models we use which will ultimately become our traditions.

Will we move of on a direction where we totally segregate people with intellectual disabilities from the traditional church as if they were some pariah, claiming we are doing what is best for them? I hope not. If we do, people without disabilities will continue to grow up in churches without any experience with people with disabilities. The church will also largely remain unchanged rather than becoming all it might be by including essential parts (1 Corinthians 12:23).

Will we borrow our practices from the public schools, instutiting inclusion classes within the Sunday School program? I hope not. If we do, we are building programs with the same problems that the public schools face (one reason why some research indicates that only 10% of schools have inclusive classrooms in the US). In addition, we are following a knowledge based model, which may not only not be the best for those with intellectual disabilities, it may not be the best for any of us, children or adults. Social integration has largely NOT been the result of public school inclusion programs.

Will we borrow our practices from psychology, expanding the pastoral counseling role? I hope not. If we do we will perpetuate that people with disabilities have something wrong with them, when they are just perhaps not as typical (in terms of intellect, the manner in which they move about the community, or the way they perceive the world). There is a difference, in my mind, between having something WRONG and having something different. We as the church can lead the way in helping the world to see people as having differences not wrongs.

All this is to say, that Lord willing, we will be looking at the practices of the church in 100 years, and wonder how they got the way they are relative to persons with disabilities. I would advise the church to step back and look at the way they do all programs. How would the presence of persons with disabilities cause those programs to be different? Perhaps that is the way they should have been in the first place.

We can literally do just about anything, unrestrained, without limits in terms of the manner in which we will include those who have been excluded in the past. Lets dream big, go deep in prayer and come up with crazy solutions that have never been dared in the past. Lets think about the ideal situation and plan for that. I will admit that too often I have only dreamed as big as what I think I will be permitted to do by my church, or those in leadership over me. I have not pushed the envelope as I might. As a result, I fear that the traditions that I have been involved in developing within my church will be soon outdated. Not because I didn't have bigger dreams, but rather because I settled for what I would be permitted to do, not fighting for what I had dreamed.