Shock and dismay at insensitivity

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

Do you think mothers should abort babies with disabilities?

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

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

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

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

McNair

A change in the family

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

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

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

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

McNair

Fingerprinting...again

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

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

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

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

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

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

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

McNair
(fcbu)

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

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

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

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

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

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

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

McNair

Regulated lives

I have observed a variety of things over the past couple of months that have been very disturbing to me. They relate to the manner in which the lives of adults with intellectual disabilities are "protected" by regulations. In the same manner that a person's life is regulated who is serving time in prison, the lives of adults with intellectual disabilities are regulated lives but they have done nothing wrong. Because the services provided to people in group homes are largely hidden, strange, freedom limiting, things happen. Many of these things happen in the name of protecting the people. So there are many regulations regarding the fingerprinting of people who will come into contact with the residents, where they may go, and who they may go with. State agents who are in charge of regulating the lives of people with intellectual disabilities have complete power over their lives. They determine when they get up in the morning, what they eat, what they do recreationally, who they meet with, when they shower, whether or not they can go outside, when they go to bed and everything else in between.

As I have observed, I note that too many things, too many restrictions of freedom are done for administrative convenience, or just because regulations have been developed that must be followed. These regulations were perhaps developed to protect people but what they end up doing is really, really isolating people. I am involved in the lives of perhaps 50 intellectually disabled adults to a greater or lesser degree on a weekly basis. I can tell you that those who fall under the auspices of state regulations are experiencing isolation and restrictions on basic freedomes as a direct result of governmental regulations that are supposedly there to protect them. In reality, those regulations, although they may provide some protection, regulate people right out of normalcy and right into loneliness and isolation. I used to want to blame uncaring people for not spending time with those who live in institutions, however, I now want to blame social workers, group home regulators, and those who develop restrictive legislation.

The mindset of the supposed helpers is so strange. It is almost assumed that if you want to spend time with a disabled person you are up to no good or that you have some ulterior motive. The system claims to advocate for regular but in reality it is an agent itself of discrimination. I have seen this with a variety of state agencies who claim to be advocates but in reality are controllers. It is as if they want power over intellectually disabled individuals like some benign despots. They also will villify you if you don't agree with them. However, should you want services to be more normalized or for them to spend more money, they will fight you tooth and nail, particularly if it entails they loosing the stranglehold of their power. This tells me what they are really all about. If something is the right thing to do, it is the right thing to do and we figure out how to pay for it. Agencies will argue about whether something is really necessary, unless someone else is paying for it, then they become "advocates." In California, I have seen this between Regional centers and the public schools and the Dept. of Rehabilitation and the Social Security Administration.

The agencies advocate for supports leading to a regular life for an individual if they are supports that someone else will have to pay for, but will fight hard against what is best for a person with a disability if they themselves have to pay for it. In short, they are hypocrites.

I don't know what I need to do next, but I need to do something. I can't be the only one who cares about these issues, who is frustrated by lives regulated by administrative convenience by people who are more interested in their regulations being kept than people living rich lives, filled with friends who are NOT PAID TO BE WITH THEM and experiences. I know and have known so many parents who have been frustrated and spitting mad at the system that supposedly exists to support them and their disabled family member. The answer is obviously not some notion of total openness where anything goes, however, the answer is also not to provide the lives of prison inmates to wonderful people who simply have an intellectual disability.

McNair

Trajectory of ministry

Here is another quote from N.T. Wright's Surprised by Hope

To suppose that we are saved, as it were, for out own private benefit, for the restoration of our own relationship with God (vital though that is!), and for our eventual homecoming and peace in heaven (misleading though that is!) is like a boy being given a baseball bat as a present and insisting that since it belongs to him, he must always and only play with it in private. But of course you can only do what you're meant to do with a baseball bat when you're playing with other people. And salvation only does what it's meant to do when those who have been saved, are being saved, and will one day fully be saved realize that they are saved not as souls but as wholes and not for themselves alone but for what God now longs to do through them.

The point is this. When God saves people in this life, by working through his Spirit to bring them to faith and by leading them to follow Jesus in discipleship, prayer, holiness, hope, and love, such people are designed - it isn't too strong a word - to be a sign and foretaste of what God wants to do for the entire cosmos. What's more, such people are not just to be a sign and foretaste of that ultimate salvation; they are to be part of the means by which God makes this happen in both the present and the future. (pp. 199-200)

This is powerful stuff. Our salvation is not just about us escaping punishment so we can sit on a cloud. Heaven is not about our living out our wildest fantasies forever in some spiritual place. I was listening to a radio program where the host, Dennis Prager, was asking his listeners what heaven will be like, how it will be for each person. Heaven is not about me. I think the greatest thing about heaven will be an unimpaired ability to do what God wants me to do, to live with others as God intended. That would be heaven!

However, our work, our working out our salvation, is according to Wright, a part of the way that God's plan is worked out for the present and the future, including our future existence in a new heaven and earth. With that in mind, I like to dream big. So in the area of disability, what would be the characteristics of a church that was truly representing God's will in reference to persons with disabilities and their presence in the church. To me, it is thinking about the trajectory for ministry. As we are in the the developing stages of disability ministry in the church, it is critical to think about the goal so there is a greater chance that we will hit it. Not that it is entirely knowable, however, in an "If this, then that" (Wolfensberger, 1995) kind of way if I want to end up at a particular place, then I must do particular things now in order to get there and avoid doing things that will lead me in a different direction. So, for example, if my goal is to see people with all types of disabilities fully integrated into all aspects of church life, becoming involved with those without disabilities in caring friendships, completing the Body of Christ by their presence, then I can't have a separate church that has only disabled people in it, a place where all the churches send their disabled people. It would be like having a church where all the people with a certain ethnicity would be sent, because we want our church to be comprised of a different particular ethnicity. In actuality, there is much that has to be corrected in the church in order to get us back on a trajectory of ministry that would lead to our goal.

I have had conversations with pastors who honestly think that in regards to persons with disabilities and the church, that everything is fine and I am wrong. My comment to them is that I pray that they are right. But when I know that the population of the US is 19% people with various disabilities and I look at the church and do not see those numbers, when I read secular literature talking about the isolation and loneliness of people with intellectual disabilities, I know that they are wrong. So a first correction that needs to be made in the church is the recognition that we are currently on the wrong path that will largely lead us to perpetuating the same mistakes we have been making for centuries.

In training my student teachers, I tell them to take data on the performance of their students with moderate to severe disabilities so that they can see if what they are doing is working. If their instructional strategy isn't working, they can change it such that the student improves. Too often, churches are presented with the data or look at the data, and don't believe it, or claim things are not that bad. Well if they were in the lives of individuals with disability, they would find that we are not on a trajectory that would make us what God intended for the church.

So Wright helps us by pointing out the power of what we do in our lives, not just in making a difference in the lives of all people, but also in preparing a future.

McNair

Living gently in a violent world

This past weekend I read a wonderful book called Living gently in a violent world (Hauerwas & Vanier, IVP Books, 2008). It is basically the transcripts of 4 presentations made at a conference at the University of Aberdeen, Scotland in 2006. The conference was facilitated by Dr. John Swinton, a respected colleague who is also growing to be a friend (it is difficult to make new friends with folks across the world). The main speakers were Dr. Jean Vanier, founder of the L'Arche communities, and Dr. Stanley Hauerwas, American theologian. Kathi and I actually were there in Scotland for the conference, and were honored to meet Drs. Vanier and Hauerwas. It was great to read the presentations again as the information is important enough to be preserved in book form. If you visit blog entries for September 18, 20 and October 7 of 2006 entries, you can read my reactions right after the conference.

To me, the book's title is a bit of a misnomer. Perhaps that is due to the lenses that I bring to the book. It is more about what disability and programs like L'Arche have to say to the church. I resonated with much of what was said, particularly Dr. Vanier's comments of living with and among adults with significant intellectual disabilities.

One story told by Vanier that particularly touched me is shared on page 72...

There was a little boy with a disability who was making his first Communion in a church in Paris. After the liturgy a family celebration of tea and coffee took place. The little boy's uncle went over to the mother and said, "Wasn't it a beautiful liturgy? The only sad part is that he didn't understand anything." The little boy heard and with tears in his eyes said, "Don't worry, Mummy, Jesus loves me as I am."

Too often, we reject based upon our perceived notion of who people are. As the little boy related, Jesus never rejects us but loves us as we are. A bit later on (p 73), Vanier says,

We are called to meet people just as they are and to know that each one is precious and important...But the real question is always how to discover our fundamental identity as children of God who are united to all others with the same fundamental identity. As we discover this, we find ways to meet one another and dialogue with another.

As I have stated elsewhere in this blog, if I don't know why you are precious and important, that doesn't mean you are not precious and important. That means that I don't know why you are precious and important. God tells me that you are, and it is kind of an adventure to understand God's perception of people. I approach people based on God's perception, and pray that he will allow me, will help me to see people as he sees them. Jesus truly does love people as they are. I pray that I learn that.

The book is very accessible, I felt. One chapter is a bit deep for some readers (but very good).

McNair

"The obsolete man"

After driving with my daughter, Amy, to take her car back to college, I flew home from Portland on New Year's Eve.  One of the benefits of flying Jet Blue is that they have satellite TV, so I watched the Twilight Zone marathon.  One of the shows I watched was called The Obsolete Man. It was fun in the way that Twilight Zone takes on interesting ideas that make you think.  Anyway as is typical, the program ends with Rod Serling commenting on the story.  For this particular episode, the closing narration went like this...

The chancellor, the late chancellor, was only partly correct. He was obsolete, but so is the State, the entity he worshipped. Any state, any entity, any ideology that fails to recognize the worth, the dignity, the rights of man, that state is obsolete. A case to be filed under "M" for mankind—in the Twilight Zone.

You can view the program or read about it on Wikipedia if you like, but I found the closing profound.  "Any...entity, any ideology that fails to recognize the worth, the dignity, the rights of man...is obsolete."  I wonder about how the lack of inclusion of persons with disabilities in the church has affected the manner in which it is perceived.  

Once again in one of the classes I teach, Exceptional Child (basically an introduction to special education) I had several students come up to me at the end and relate, "I never thought about people with disabilities, it never occurred to me that they were not involved in church, not included in the life of the church."  I get excited with those kinds of comments from students as it indicates that a light has come on in their minds.  If they go no further than awareness, they have still come a long way.  But does this level of awareness imply to them that the church is obsolete?  Perhaps not obsolete, however, to many it implies an irrelevance to their life issues.

The good news about this form of being obsolete is that it can be changed.  It can be "upgraded" so to speak.  Involvement with the church needn't be terminated (as the character in the Twilight Zone episode was killed).  Rather we can help the obsolete, the irrelevant become relevant, become useful.  In particular because we have access to their owner's manual and know what it says.  By following the Christian church's owner's manual, the Bible, the church will never become obsolete or irrelevant.

But one could also ask whether some disabled people are obsolete.  We have states in the US who believe so.  You can go to your doctor and asked to be killed, and the response basically is "Sure."  You can have severe disabilities at birth and be left on a table to die.  You can have down's syndrome as a result of a botched abortion and be left on a table to die because the protection of abortion rights are more important than the life of an infant with a disability.  You can have severe disabilities at the end of your life and be starved to death and it is called the humanitarian thing to do.  Any society that facilitates, that promotes such responses to persons with disabilities is obsolete, is in need of replacement with something better.  We need a new model for society.  I wonder if the Christian church is up to the task of providing that new model for loving people with disabilities that the society is desperately in need of.  I will tell you that we have not provided that model over the past centuries.  Would the state even consider looking to the church for answers based upon our track record in this area?

McNair

Therapy is power whether it is delivered in a hospital or in a group home.

In response to my previous blog, Barbara made the comment that she didn't quite understand the comment that "Therapy is power whether it is delivered in a hospital or in a group home."  Let me expand a bit on this.

When people are in need, those who provide services have power over them. They have power in defining them according to their need, in the provision or withholding of services, and determining whether someone is or is not in need of services. This is particularly true in the lives of persons with intellectual disabilities, however, it also applies more broadly.

People with intellectual disabilities are placed in group homes, for example, and research shows that this placement has the effect of largely placing them out of community consciousness. In the rare case they enjoy the presence of advocates, or just people who care, and their lives are radically changed. Otherwise, they experience a life managed by people who are working in this area as a profession. Now I honestly hope that people who run group homes are in that business because they care for their clients, but I am just not that naive. There is money to be made in disability programs. But putting that aside, people managers will manage people in ways that make the management easier for themselves. To offer people enriched lives costs time and money. It takes effort. It implies that I will have to go out of my way to do things for my clients which are not required by the agencies that monitor the services that I provide. As a result, too many group homes shoot for minimal standards because that is all that is required for them to stay in business. Can you see how the end result is that people lives are subjected to the power of those who manage them? Now power doesn't necessarily imply evil, or a bad use of power, however, there is power nonetheless. A goal of therapy (whether it be counseling, or hospital care, or managing a group home) should be to empower people which implies messiness in the delivering of services because the managed will express their freedom. They will not want the regimented life that is easier for those who are managers. In a group; home setting, they will go to bed at different times, want a shower at at a different time, want to take a walk, want to do a variety of things that require more staff or greater costs. The result, then, is that freedom is restricted because it is administratively convenient to do so. But there are also limitations based upon those who fund therapy. Those providing therapy have power over the lives of people because of the way they choose to spend the money they are given to provide services.  

I believe I have stated in this blog how a local school district provides "state of the art" services to children with autism, only if there is the likelihood that the parents will get a lawyer and go to fair hearing. So those providing therapy will limit best educational practices for children with autism on the basis of trying to save money. This once again is power and without an advocate, you get less services.

I could provide more examples positively and negatively. I mean I have power over people with intellectual disabilities simply in the ability I have to enrich their lives by the things that I do. If I show up once a month with a box of candy bars, I have the ability to insist on certain behaviors in the people in order to get a candy bar. I have resources that I have the ability to offer to the people that they have no concept of. The way that I wield those resources gives me power over the people. So the point is not to vilify or praise the fact of power, but just to describe it so that those who are in the position of power understand what they bring to a situation in terms of impacting the lives of others.

McNair

6:00 PM

Over the Christmas holiday, Kathi and I did some shopping and bought a bunch of gifts for friends of ours who live in a couple of local group homes. The one home I visit regularly, the second not as frequently. Anyway, we went by the first home, getting there at around 6:00 PM, and imagine our surprise when we were greeted by two workers who told us that all the men who lived there were already in bed, asleep. That implies that they were in bed for the night at 5:30 I would guess. We were quite surprised by this. Why do 30-50 year old adults go to bed at 5:30 PM?

I am sure that I do not need to supply an answer to this question. I am not sure what time they get up in the morning, I would assume very early, but it certainly seems a strange schedule to keep. Where do adults with severe intellectual disabilities learn to keep a schedule that is different from 99% of the adult world, and different I would have to suspect from any schedule they had while they were growing up?

I also have to say that the group home is a good one. The directors are very caring people, I believe, who generally have the best in mind for their clients.

One of the benefits of church involvement in the lives of persons with severe disabilities is that you get to see what goes on in group homes that typically no one would see other than those who run residential settings or check for compliance. The extra set of eyes cannot help but ensure that things are as they should be. I will often look to see that their possessions are still there and have not disappeared. I am interested in how they are treated and what freedoms they enjoy in their lives. By developing a relationship with those in charge, I can develop the right to ask questions about care. For example, because of involvement in the group home I have had over the last few years, I will be asking about the going to bed at 6:00 PM. Now I do not expect that anything will change...it is not normal, but it is not abusive and the residents seem to be happy people.

But presence can do a great deal should abuse be occurring in a residential facility. It is a simple thing that a church/disability ministry can do in the name of social justice. You are looking out for those who haven't the ability to protect themselves and wouldn't know what to do if they were experiencing some form of abuse.

But 6:00 PM also shows something else about the lives of persons with disabilities and the power of service providers wield over them. Therapy is power whether it is delivered in a hospital or in a group home. Lives are managed for the ease of the managers not to facilitate the freedom of the managed. Remember that if you are a person who works in human services. I always tell the wide eyed, idealistic teachers that I train that far too many educational decisions are made on the basis of administrative convenience not on the basis of pedagogy. It is just a fact. I don't like it, but it is a fact. I, however, encourage my teachers to fight for pedagogical decision making, particularly when they have tenure...we also always discuss what is worth loosing your job over when you buck administrative decision making on the basis of convenience. That is fighting for social justice. You won't be celebrated by those you are inconveniencing, and you will get the reputation of being a pain, but you will be able to live out the passion that motivated you to get into human services in the first place.

It should also be a part of the motivation which gets you into disability ministry. Why do you think that ministry to persons with disabilities has been so long in coming? Does decision making on the basis of administrative convenience also apply to the Christian church? Unfortunately it too often does.

McNair

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 swear 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.

McNair

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.

McNair

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.

McNair

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.

McNair

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.

McNair

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.

McNair

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.

McNair

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.

McNair

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.

McNair
(fcbu)

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.

McNair

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.

McNair

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?"  

"No." 

"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?"  

"No." 

"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?"  

"No." 

"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.

McNair