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