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

Wednesday, March 25, 2009

"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).
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.


Monday, March 16, 2009

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.


Friday, March 13, 2009

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.


Thursday, March 12, 2009

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.




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.


Friday, March 06, 2009

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.