"You feed them" moments

My friends, Mark, Rick and George are all reading Andy Crouch's Culture Making (2008, IVP) together. In the first section of the book there was a series of comments that I want to string together here regarding the changing of a culture. For my purposes, I am thinking about the Christian church in general, and my church specifically in regards to issues of disability. Crouch writes the following...

So if we seek to change culture, we will have to create something new, something that will persuade our neighbors to set aside some existing set of cultural goods for our new proposal. And note well that there are a number of other possible strategies, none of which, by themselves, will have any effect on culture at all (p. 67).

Later...

Creativity is the only viable source of change (p. 73).

And finally...

So underneath almost every act of culture making we find countless small acts of culture keeping. That is why the good screenwriter has first watched a thousand movies; why the surgeon who pioneers a new technique has first performed a thousand routine surgeries; and why the investor who provides funds to the nest startup has first studied a thousand balance sheets. Cultural creativity requires cultural maturity. Someday my own children will undoubtedly cook me a wonderful meal-but by that time, they will also have learned to lvoe chili. With any luck, they will be both culture keepers and culture makers- both cultivators and creators. And then they will be prepared to both conserve culture at its best and change it for the better by offering the world something new (p. 77).

I think that is what we are actually up to here. We are in the process of creating something truly new for the church that we are hoping they will move toward and use to replace what they are currently doing. It must be something highly creative. But it is built out of a history of experience within the church. It recognizes the things that the church is doing that are working well and celebrates them. However, it also builds the creative new thing as a replacement. Something that once demonstrated, would be embraced as an alternative. In the end, vestiges of the old would remain, however, it is the creative new that most are doing.

I think we see this today in the embracing of various technologies being used within worship services. Yes there are churches who still use hymnbooks. But the creative that people are moving toward is the projection of the lyrics with the video moving behind them.

In the realm of disability, I honestly thing that there is an alternative to the way we do religious education. I am writing about this at the moment. We need to change our terms for even describing what we are up to from religious education to faith development. The implications of the two terms are vastly different. The move to faith development would also move us in the direction of programs that would include people with various disabilities. You see the focus is not "education" in the sense of public school education, but something different (I would say, something better) that would have knowledge delivery as a part of the package but something of which knowledge was only a very small part. Come to think of it, we see that a lot in the way that Jesus develops the disciples. He definitely teaches them things, gives them information, but then he demonstrates things in his interactions with others, and even gives the disciples assignments as a way to grow their faith. Its the, "You feed them" moment. Faith development programs which included people with disabilities would have LOTS of "You feed them" moments both designed to be such, and growing out of the typical activities of live that come from following Jesus.

I am in the process of trying to flesh out what that would actually look like. How would religious education change to be faith development with "You feed them" moments. I actually think that once we get our minds around this notion programatically, it would, to use Crouch's words, be creative, something new that would cause people to put aside some of the existing cultural goods, and both conserve culture and change it for the better.

McNair

Friendship and change

More from Dr. Hans Reinder's book, Receiving the gift of friendship: Profound disability, theological anthropology and ethics.

I wish to confront longstanding convictions in the Christian tradition with the implications of exclusion that have never been properly addressed. To avoid these implications, the church needs to find ways of thinking about being human that do not support the distinction between people with and without disabilities. I believe that friendship is the key to this attempt. Every human being is worthy of being chosen as a friend simply because that is what God does - choose us to be friends (p 162).

Later on the same page and on to page 163,

The struggle for equality and justice begin by the disability-rights movement is important; but in order for it to be truly inclusive, that struggle must be nourished by moral resources beyond the realm of politics...To substantiate these claims I must explain one further aspect of why I consider the disability-rights approach insufficient: "insufficient" here does not mean that beyond "access" there is a further goal, "friendship", that we need to reach for, as if it were the icing on a cake. The point is not that we should move beyond equality and justice, because that would presuppose that we already have realized these goals which is at best only partially true. The goals of equality and justice are not realized within our churches, not even at the minimal level of physical accessibility. Therefore, it is not that we add "friendship" to the list of goods people with disabilities need to have. Friendship is not merely complementary to the goals of equality and justice. Especially regarding intellectually disabled persons, the point is much more critical than that: it is that the disability-rights approach leaves unquestioned what causes the exclusion of these humans in the first place, which is that most people in our moral culture do not want them to be part of their lives...I want Christians to consider friendship with a disabled person as a vocation that, once they have entered into it, will change not only their own lives, but also the life of the church. This goal is clearly different from theologies that argue for equal access. My primary aim - rather than opening up buildings, jobs, or positions - is to change people's mind.

But you see, people don't get this. Last week, for example, I gave an inservice to professionals working in the area of transition from school to adult life. My entire premise was the need for them to develop friendships with adults with disabilities. In human services we focus on jobs and independent living, which are important things to work on. However, as I indicated to the audience, if you asked me what was the most important thing in my life and I said my job or my house, your response would probably be, "How sad." It is relationships which are typically the most important thing in people's lives. Yet as professionals, our efforts relate to other people developing relationships with persons with disabilities (through school inclusion programs, etc.) when our efforts should begin with we ourselves developing relationships once again as both a benefit to ourselves and to those we befriend, and also and example to the community. As Reinders states, it is true Christian or otherwise "that most people in our moral culture do not want them to be part of their lives". People with severe or profound disabilities are not wanted in families, in churches, in the community which may be why many of the programs for them have developed in the manner in which they have

I have complained in this blog about the problems with fingerprinting. But fingerprinting is both a way to protect people with disabilities from being victimized and to protect society from people with disabilities. That may not have been the intention, you might say, and hopefully you are right. However, that has been the effect. There is a societal construction against having persons with disabilies in our lives, and our practices, supposedly designed in support of people with disabilities actually support noninvolvement in their lives. Should I be able to overcome the societal common sense of not getting involved, I then run up against the professional practices which frustrate my desires to befriend.

But as Reinders indicates, friendship is not just the icing on the cake of access. Friendship is the cake. Clearly there will be difficulty in developing friendships without some level of reciprocal access so that access is a starting point. But the promised land is social integration which implies a choice on the part of those we would like to be integrated with each other. Typically because of the isolation of persons with disabilities, the choice therefore, is in the hands of those without disabilities. Perhaps a move in the right direction would be a certain level of the removal of choice.

That has been one of my major desires for the church. The church needs to be confronted by people with disabilities which begins with their presence at church. Let's see what our faith is made of, how we love others by our "works" (See James 2:20). As I have stated elsewhere, the presence of persons with disabilities in the church, including people with severe and profound disabilities, would be a corrective for the church taking us to a place we were meant to be but to date have never been.

McNair

The dream of an advocate

When my son Josh and I go to the movies together, we are always looking for the classic line. It is typically not the lines that Hollywood recognizes, but powerful ideas that jump out at us.

Like from Matrix Reloaded
Lock: "*****, Morpheus! Not everyone believes what you believe!"
Morpheus: "My beliefs do not require them to."

Or from Pulp Fiction
"If my answers scare you Vincent, then perhaps you should cease asking scary questions"

Last week we saw the movie Watchmen. It was just ok, not great. One character who was particularly good, I thought, was a violent superhero named Rorshach. He is responsible for putting many bad guys in jail. At one point in the story, he is placed in jail himself. While he is in the cafeteria, one very large inmate confronts him, threatening him with the fact that he is now in there with the bad guys. He attacks but Rorshach beats him to a pulp. As the other inmates look on, Rorshach threateningly says to the room filled with convicts,

"I'm not stuck in here with you. You're stuck in here with me!"

We agreed that was the line we loved. And that is the way I feel as an advocate who is doing what I can, however small, to change the world around me.

"I'm not stuck in this world with those who would demean and exclude
persons with disabilities. It is my desire to grow as an advocate such that they feel that they are stuck in this world with me and people like me who will not stand for the injustices that are leveled against persons with disabilities."

I don't exaggerate my importance, I am largely unimportant. However, should God choose to use myself and others, I hope to make people, particularly those in the church, uncomfortable with anything short of a truly Biblical perspective on disability. Together, we can give purveyors of injustice, wherever they be, the feeling that the future of their injustice is threatened by our efforts, our ideas, by our very presence. The day I quit my efforts, is the day I am the one who is stuck in a world with them and the things they do and represent.

As long as I continue to fight, they are stuck in a world with ME!

May God make it so.

McNair

Where we are today...not a good place

I received this notice the other day about groups on facebook...

Currently there are over 1000 groups on Facebook whose goal is to mock and demean people with special needs and disabilities.

So I joined the group that is against this practice, but am saddened by what this represents.

Think about this in light of the recent Henry's turkey service incident where men with intellectual disabilities were living in deplorable conditions earning next to nothing in wages. I wonder if the press realizes how common this situation is across the United States. That is, people earning next to nothing and living in substandard places. It was sad that one article related that the bunkhouse where the men were living was so infested with various vermin that it was doubtful that any of their posessions could even be retrieved for them. So sad.

I have personally seen the controlled lives that persons with intellectual disabilities live even in the best of group home settings. I can only imagine how their lives are in bad places.

Then we have also heard this week about the "fight club" at the residence for adults with intellectual disabilities. If you go to this google search page, the story is listed under the heading, "Stuff paintballers might not hate" which is also disturbing. This story is about how staff at a residence were getting the adults to fight one another, apparently for the staff's enjoyment. I suspect the videos of this horrible practice will be surfacing soon, and people with laugh and enjoy them.

One encouraging note, however. When I am able, I like to listen to Dennis Miller on the radio. The other night, a caller made some comment to the effect that a particular politician was a "r****d", a disparaging term used for people with intellectual disabilities. To his credit, Mr. Miller stated something to the effect, "I have friends with mental challenges and they don't like that people use that term like that, so I would request that you wouldn't." To which the next caller used the same terminology probably to Miller's consternation.

We live in difficult times in many ways. We are rabid to kill disabled people before birth. We are moving towards a health rationing system which will potentially cause them to be denied services because they won't score well on a quality of life formula, or because their prospects (their utility to society) will be deemed less than desirable. In the background, those entrusted with their care treat them as slaves or pit bulls in a dog fight, while the politicians lie bold faced to us about their caring.

PAY ATTENTION TO WHAT IS HAPPENING AROUND YOU!!

McNair

Doublespeak

I was chatting with some friends the other day, and they were relating how elated they were that President Obama was elected. Being older and African-American they spoke of the discrimination they had experienced growing up in the south. Anyway in the course of the discussion, I related that I too was pleased that an African-American had made his way to the White House, but that I did not agree with his positions on many issues, in particular, I am very disturbed about his position on abortion. One of my friends said she was unaware of his positions on abortion. I related about how he made promises to Planned Parenthood prior to the election, how he would not vote against partial birth abortion as an Illinois congressman and other aspects of his position. She asked what is partial birth abortion? I actually drew her a picture describing the heinous act. Her husband looked on as I described the procedure. She was shocked. He said casually, "He is pro choice." I was then shocked. The murder that is partial birth abortion is dismissed as simply, "He is pro choice."

I am finding such doublespeak rampant in politics at the moment. It is not that it is anything new for a politician to tell you one thing and do another, but the blatant doublespeak, the blatant lies coming from our politicians are very disturbing. We literally live in a culture where politicians can tell you one thing and do exactly the opposite I assume because they think you and I are stupid. I have a quote from George Orwell at the top of this page that related the sentiment of our time. It says, "“During times of universal deceit, telling the truth becomes a revolutionary act.” Nothing could be truer about today in our country. We are living Orwell's Animal Farm (which I would encourage you to read if you haven't). It is chilling how well it describes our current political climate.

So I would encourage you to think about the language used to describe the activities of people in Washington or state politics. I am confident that they are choosing their words very carefully, often in an effort to spin and decieve. I mean how could I be against someone being able to make choices in their life. I work all the time to help friends with disabilities to have increased choices in their lives. But evil can be disguised by language, and you will be fooled if you are not paying attention.

McNair

Friends with and without disabilities

I gave an inservice to professional working in the area of "transition" this past Wednesday. Transition, in case you don't know, relates to the time period between age 14-16, and age 22 when a student leaves school and begins his "adult life". The focus on this time period in the lives of students with disabilities has been helpful, at times, in planning for their future.

Well, in this inservice I spoke of how the typical 3 outcomes we are looking to facilitate are work, a good place to live and social relationships/satisfaction with ones life. It has long been believed that a critical aspect of social satisfaction is that friendships be developed that are not exclusively with people who are paid to be with an individual with a disability, or are not exclusively with others who also have disabilities. Trust me that this has been an important thrust in a variety of fields. However, in preparing for my inservice, it once again struck me that although we are worried if people with disabilities don't have nondisabled friends, we are not as worried that people without disabilities have friends with disabilities. In my mind it is at least as important and most likely is much more important in the life of the person who is not disabled to have friends who are disabled. Why might I say that?

For myself, I think my friends with disabilities (mostly people with intellectual disabilities) stretch me socially, make me more acceptiong. As I have come to learn, they make me more like themselves in this way. I am hopefully growing to be accepting of others in the ways that they are accepting of others. These types of friendships although they can be demanding bless ME in myriad ways.

However, it is funny because society tends to think that if we befriend a person with a disability we are doing them a favor. I guess befriending anyone is doing them a favor, but we are especially helping if we befriend a person with a disability. Now I agree that people with disabilities need friends who are not disabled, but I do not agree that I am the only one who is giving in a friendship. They are never the only ones who are benefitting in a relationship. I think that is one of saddest misconceptions about people with intellectual disabilities: the nondisabled always do for them they do nothing for those who are not disabled. Nothing could be further from the truth, however, you need to be paying attention. Yes I am the one who is buying the ice cream, or the Starbucks and I am the one who is driving the car and so forth. But there is an aspect of this where I am doing, while they are being. That is something that I could really unpack but it needs a lot more thought. But I will say that if I have limited resources to do for someone, I tend to think I have nothing to offer because I can't do. How can I benefit others by my being in the same manner that my friends with intellectual disabilities benefit me by their being? That is a lesson I need to learn. It is a difficult lesson because I am so focussed in my life on being this and doing this. It isn't that my friends have made the decision not to be like me. It has to do with the "cards they have been dealt". I have the ability to reflect on this difference to try to understand it.

McNair

Learning from my friends

This past week we celebrated the 16 year of our Light and Power group at my church. Kathi and I started the group way back then and have learned a great deal over the years. As I was reflecting on that very idea, what I had learned, the thing that jumps out at me is the perspective that adults with intellectual disabilities have about themselves and about others. It is a perspective that I am still trying to learn...or perhaps would be a process of unlearning much of what I currently know about ideas of intellectual disability.

You see, 1) my friends largely do not see themselves as disabled and 2) they don't see me as different from them in any significant way.

I, on the contrary, 1) see them as disabled and 2) see myself as different. I have good reason for my perceptions, however, because on the basis of all the assessments I have been taught to value, I score higher than they do. So obviously that implies that we are different in characteristics that are very important.

My friends are happy with their lives, but I see them as disabled.
My friends do not see themselves as disabled, but I see them as disabled.
My friends do not see any difference between they and I, but I see them as disabled.

The biggest lesson I am learning, is not to judge others, from the others who I and other professionals are constantly judging. Rather than just seeing people as people, I evaluate them and see them as disabled. I have been trained well both professionally and by my society. But I am increasingly evaluating the notions which are entrenched in my thinking and finding that perspective is not only wrong morally, it is wrong logically. No benefit is provided that I can really see by many of the labels provided. They are provided such that menus of services can be made accessible. I have to have a particular label in order to receive a particular service. Perhaps this makes sense for agencies. But why would such a professional perspective find its way into my personal life? Why would such a perspective find its way into the church? Is there really any benefit in me convincing myself and those with intellectual disabilities that we differ from each other? Because I am the one with the higher score on the test used to make the differentiation, perhaps I might be more apt to embrace the assessment. But my friends with intellectual disabilities teach me with their lives that those assessments are in many ways foolish and do not reflect reality.
McNair

Be compassionate, don't evacuate

In my entry of 11/18/08, I spoke about the earthquake drill here in Southern California, and the problematic response I observed at one high school.

My friend Michael Hoggatt, makes a similar observation in his blog entry today regarding a situation in Texas. Check it out at http://manger-hoggblog.blogspot.com/2009/02/disasters-drill-in-buda-texas.html

McNair

Adults as children

A friend of mine, recently sent me a link to his weblog. As I read it, I was impressed by his premise that adults with disabilities are really children because of their supposed "mental age" functioning. I have no idea why anyone would embrace the notion of mental age. I would be happy to go toe to toe with any psychologist over the issue. As an educator, it tells me nothing, absolutely nothing about a person. Well I take that back. It tells me that the person who uses mental age is very comfortable in using a way of describing people that demeans them. I have seen many mean things done in the name of mental age. And as I say, if you are told that I have a mental age of a 12 year old (I do in a lot of ways, and may I never change) what does that tell you about me? Does it tell you that I didn't really progress past 6 grade in terms of my understanding of mathematics? Does it tell you that I am a fun loving person with the heart of a child? Does it tell you that I am still going through puberty? I mean it is really not helpful. Then if you tell me that I have the mental age of a 3 year old, well, I just don't know what that means.

I recall when I was working in an intermediate care facility in the 1970's. It was at the time of deinstitutionalization. I had developed a friendship with a senior woman who liked to watch "The Guiding Light" every day. Some days I would watch with her. Because I was responsible for carrying out occupational therapy services designed by an OT, I had access to her chart. It indicated that her IQ was 27. I don't know what mental age that would translate to, but this was a woman whom I would discuss a soap opera with..."do you think Sarah's child is from Bob?" It is just not helpful. If you want a graphic example of this, view the Marc Gold video I have a link to in this blogsite.

But in my research meeting that I had the other day, I saw it again. We are to treat persons with intellectual disabilities as children. My response to that is that those people do not know people with intellectual disabilities. They let their socially constructed notions of who they are determine their actions towards them rather than attempt to find out the truth. It was fascinating, although discouraging, to me that the social constructions I was proposing to research were actually being acted out in front of me by those who were evaluating the research. Of course they were clueless to this fact and only saw themselves protecting my subjects.

Personally, I am constantly on the look out for those wrong notions of who disabled people are in myself. I really bugs me when I find one and wonder how I allowed that to exist in my psyche. People think they are protecting when in reality they are contributing to further wounding of devalued people. Revisit Wolfensberger's wounds in this blogsite. Ask God to help you see how you contribute to the wounding of others. It doesn't matter too much either whether or not you are well intentioned. I need to evaluate my best intentions in the light of what is true and if my intentions take me to a place where people are devalued, then I need to have the intellectual honesty to grow up and quit saying "I didn't mean it". If you keep doing something when there is the possibility that you can change through knowledge but you resist knowledge, then independent of your intentions, you should be blamed.

Adults with intellectual disabilities are adults.

If YOU treat them like children, YOU are wrong.

If you treat them like adults, they will rise to your expectations and drive you to repentence for the contribution you made to their wounding.

McNair

Gandhi on the fight

My daughter, Amy, sent me this great quote from Mahatma Gandhi.

First they ignore you, then they ridicule you, then they fight you, then you win.

This has been my experience a bit in the work in disability ministry. We had been ignored for a long time. I have been told that disability ministry is not a priority, in other words, go away we want to ignore you. I have been told that I am wasting my time. I have heard from many others that church leaders have told them the same kinds of things.

I am happy to say that I haven't heard the ridicule from the church. I think in their heart of hearts them know that people with disabilities should be present in the church. So although they may resist what they know is right because they are afraid or don't know what to do are lazy or even negative in their attitudes, they have not engaged in ridicule.

But they do fight you. Have you ever heard these kinds of comments?
We have never done it that way.
The Sunday School class meets on the second floor and we don't have an elevator.
We got to keep the homeless man out of the bushes.
The girl with down's syndrome disrupts the junior high Bible study.
We need to get rid of the mentally ill woman.
Sunday School teachers won't teach if the boy with autism is in the class.
We will have to change ...
Why should people with disabilities be a priority for ministry? (one of the worst I ever heard)
It will be too expensive.
I don't have any training.
They are a black hole for service.
They will drive others away.
They are too disruptive.
and so on and so on.

But if you believe Gandhi, if you persist, in the end...YOU WIN!

I think I am beginning to feel the change in momentum towards our side. It's like a football game where one team is ahead, but things happen that tell you that the other side is coming back. In reality, in the church we are all on the same side, although some don't know it yet. But there are many things happening. I can tell you that there is just an increasing interest in issues of spirituality and disability, and again it is finding its way into the church. At times Christians are leading the way in this momentum change and that is exciting. But we can't be self congratulatory yet...if ever.

Not too long ago, I was picking up a friend who works at a sheltered workshop in my town. He was going to be a guest speaker in one of my classes. Anyway, as I waited for him, perhaps a hundred adults with intellectual disabilities exited the building. There were faces I recognized and people I greeted, but I bet I knew 15% of the people at best. I hope others in that group have their own places to worship, but I can't help thinking they don't. Multiply that by the number of communities, take in those who are in supported employment settings or adult day care. What about the thousands of group homes that exist in our communities? If a church has 3 or 4 adults with intellectual disabilities in their congregation, that is great. But there are many more of these folks in the community.

May God open our eyes to needy people in our community. May God draw us to them and them to us. May God receive the glory when we are obedient in loving our neighbor.

McNair

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