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

Sunday, June 15, 2008

Go and make vs. build and they will come

I teach a class that is called "The Exceptional Child." It is basically a class that is an introduction to disability. One of my assignments in the class is for students to contact their local church and interview their pastor about the priority the church places on recruiting and ministering to persons with various disabilities. All too often, students report that the pastor says that they have handicapped parking spaces and accessible restrooms, and that they also have areas for people who use wheelchairs. The typical comment is that "They are welcome and that we would serve them if they came." In a kind of Field of Dreams model for ministry, you simply meet the basic requirements of the law in the United States (handicapped parking places and accessible restrooms) and people with disabilities will be so impressed that they will come to your church! Build the large bathroom stall and they will come!
I remember that was actually a principle I was taught as an undergrad in Christian Education (my major). "If you want to minister to widows, start talking to them from the pulpit and they will come." I guess that it makes a little sense.

As I sat in church this morning, however, Dr. Gary Inrig, my pastor was teaching on Matthew 28:16-20. The passage states, "Go therefore and make disciples of all the nations, baptizing them in the name of the Father and the Son and the Holy Spirit..." As Gary stated, it doesn't say, "Sit here and wait in Galilee and people will come." It says go to the nations. I am confident that relates to persons with disabilities as they are just members of the nations. We should go to them as we would go to any other member of the nations and invite them in. Jesus' command is "Go" not "Build it and they will come" or "We will serve them if they come to us." There is a big difference between going and sitting and waiting.

One other note, Titus 2:10 also states "Make the teaching about God our savior attractive in every way." I suspect this is not just a verse about knowledge, about the content of instructional lessons in the church. I don't think it just means that we should use lots of video screens and the latest technology, although I am not opposed to that. It is something different.

How would I make the teaching about God our savior attractive to persons with disabilities and their families? I could begin by accepting them both the families and the people with disabilities. I might even talk about the life experience of people with disabilities from the pulpit because it gives the impression that those in leadership have thought about both disability and theology as it relates to disability. It makes a difference. Human experience around disability and how an understanding of God relates to it is nuanced. There is a difference between being born with a disability or having some traumatic event in your life that causes a disability, or just kind of "rusting" (as I feel is happening to me) such that disabilities of vision or physical or memory just begin to happen as a result of age. Does God, does the Bible, does theology have nothing to say to these aspects of human experience? You might think it doesn't based on the amount of time that pastor's dedicate to the subject. I could begin also by going out and trying to find persons with disabilities and their families and telling them about the priority that God seems to place on them and the importance of their participation within the church. The church desperately needs to discover that importance and reflect it in its practices.
Then, the teaching about our God and savior would be SO attractive, it would be hard to stay away. The church would be REALLY accepting people, really loving people as it was meant to. The church would be seeking out people who are "difficult to love" because of social skills and that would be attractive to the community. The church would really be about acceptance and loving others as a reflection of its God and savior and it would be hard to stay away.


Thursday, June 12, 2008

Cal Baptist receives WASC approval for Disability Studies MA

California Baptist University recently received preliminary approval for a MA degree in disability studies. Final approval will hopefully be received this coming Fall. The degree has a variety of unique aspects. http://www.calbaptist.edu/disabilitystudies/

First, the program is entirely online. So, basically you will be able to enroll in this degree program from anywhere where you have decent internet access. Aspects of the program will by synchronous and aspects asynchronous, but the program is designed such that it will work with your schedule.

Second, it is offered by a Christian university. There are several Christian colleges/universities working in this area, however, Cal Baptist is one of the few with a MA degree. We hope to address any issues in disability studies, but we are unabashedly Christian as well. A Christian approach will be developed and discussed in the program.

Third, one cognate area students may choose is to specialize in Disability Ministry. That narrows the field down even more. We anticipate an awakening within the church and we want to prepare people who can reach out and embrace people experiencing various disaiblities. Students may also choose Leadership or Disability Policy as areas of focus.

Fourth, we have been enjoying a collaborative relationship with the Joni and friends organization who have been helpful in the design of this study area. Joni and friends are world leaders in aspects of Christianity and disability. We look forward to their help in facilitating internship/fieldwork opportunities for students around the world.

Courses will begin in the Fall of 2008! So if this is a program of interest to you, visit our website, send me an email, jmcnair@calbaptist.edu and we will try to get your questions answered.

May God bless and lead us in this endeavor!



Neurodiversity (noo.roh.di.VUR.suh.tee, -dy.VUR.suh.tee) n. The variety of non-debilitating neurological behaviors and abilities exhibited by the human race. Also: neuro-diversity.—neurodiverse adj. (from Word Spy)

So neurodiversity is about how people's minds are different. As Word Spy goes on to quote, it might include people's minds affected by autism, dyslexia, ADHD, dyspraxia and tourette's syndrome. I would also add people with intellectual disabilities. The key to this definition is "non-debilitating" and who knows what that means? Their assumption is that being autistic, or dyslexic or having tourette's syndrome are not debilitating in our society. But one can be debilitated in a variety of ways. For most people with the differences mentioned, the debilitation is societally caused. Persons with autism, for example, often evidence social skills/social behaviors which are atypical. It doesn't take much in the way of movement ouside of the limited range of "normal" in the area of social skills for one to at worst feel debilitated, and at best to have the feeling, "I am strange."

Generally speaking, I would agree with the notion of acceptance of people who are not "neurotypical" as I would advocate for acceptance of other similar aspects of human diversity. Using autism again, the social differences often evidenced in autism are in no way wrong or evil. They simply require of society a greater openness and a greater willingness to expand the notion of typical or normal. As Marc Gold defined the term "mental retardation"...
Mental retardation refers to a level of functioning which requires from
society significantly above average training procedures and superior assets in
adaptive behavior on the part of society, manifested throughout the life of both
society and the individual (you will get the connection if you are familiar with the old AAMR definition he was referring to)
Individuals with more severe forms of autism will make demands on me in terms of understanding their efforts at communication or in terms of not being put off by atypical behavior; in summary their differences. These differences cause me to change as a person. In reality it enlivens things, it opens things up a bit, it causes me to break out of my social skill normality straightjacket, and truly see innocent, behavioral differences in a morally uncharged manner. I make the decision to recognize that atypical behavior is not necessarily wrong or immoral behavior. It can simply be atypical.

People who are atypical can and do do amazing things that can ultimately change society. They do things like sit in an atypical place in a bus when society demands that they sit in a typical place. They do things like go to an atypical place and live among the poor and destitute when society would tell them to seek greater material wealth. They do things like teach atypical children with profound disabilities when society would tell them to teach the gifted and brightest, and not waste their life. They do things like be present to people who claim to believe in God, showing them who their God really is, and how it is that they might grow to be like him.

The notes on the Word Spy definition go on to say that "there is no such thing as 'normal' when it comes to the human mental landscape." I don't think that I would go that far. There is such a thing as average intelligence or average height and weight, and average could be equated with what is normal or typical. I think the point here is not to say that everybody is the same. The point is to open up what is accepted by the typicals as within the normal range such that people are not excluded. I am tall. You can tell me that I am not tall, but I am still tall. However, you can reject me for being atypical in the area of height, or you can say to yourself, "That guy is very tall, but that is really kind of irrelevant." You might have to hold your neck at a bit of a weird angle to talk to me (particularly if you use a wheelchair although I always try to remember to kneel) but I hope you will still talk to me.



Monday, June 09, 2008

A sad lack of understanding

Well, I had an interesting past two weeks. Two weeks ago I was in Washington D.C. at the American Association on Intellectual and Developmental Disability conference. I didn't really like the format of the conference, but that is just a personal preference. What was more problematic, was that one of the main presenters was a higher up representative of the Human Genome project. I was fascinated to learn that the human genome only has about 20,000 genes, which is much less than I had been taught. Also that the wild mustard plant that populates the chaparral hills of Southern California has about 22,000 genes. Don't know what to make of that, but it does give you pause.

The larger question for me, however, is the implications of the human genome project to the future of persons with intellectual disabilities. Although the presenter spoke of genetic diseases that can be better understood and such, my mind was elsewhere. At the close of the presentation, there was the opportunity for questions. One question was asked, and then I couldn't keep silent any longer...

"The elephant in the room here, is that knowledge of the human genome and the understanding of genes that cause disability will lead to prenatal diagnosis and abortion of persons with various disabilities as has happened to people with down's syndrome. I personally do not want to live in a world without persons with intellectual disabilities. How would you respond to this concern?"
The presenter stammered about how he learned lessons from disease in his life, and then made a quick departure. I left wondering, however, whether the organization, AAIDD, or at least those who scheduled the presenter, had any notion of the connection between prenatal diagnosis and abortion of persons with genetic disabilities, or whether they supported such a connection as evidenced by the presence of the presenter. I quit the organization in 1992 when they had the leader of Planned Parenthood as a keynote presenter. What conclusion could possibly have been drawn from such a presenter other than that the organization supported the abortion of persons with intellectual disabilities. It has only been recently that I have rejoined the organization, however, I assure you that I will do what I can to change it.

During the same session, another presentation was made about the application of technology to the life of an adult with alzheimer's disease. It showed how everything from monitoring the taking of medication, to phone use, to the opening of the refrigerator or whether the stove was turned on could be done. It all seemed very cool, however, such monitoring at a distance at least in part leads to the distancing of people from people who need support, need human contact. I no longer need to have direct contact with a loved one, I can just use technology to monitor from afar. It was also reminiscent of 1984. Overall a very scary presentation, the scariness of which the presenter was oblivious to.

I thought that this is how these things happen. We chart the human genome, and the result is abortion of persons for any type of difference that we do not particularly want. It is not as if this kind of thing were not already occurring. But AAIDD was oblivious. The distancing of people from people, and the move headlong into the total monitoring, by computer of a persons life. Once again, the organization was oblivious.

Then this past week, I helped to facilitate a training on Social Role Valorization on the campus of California Baptist University. The training was excellent, and reinforced to me disconnectedness of the conference from the realities of life for and with disabled people. I honestly wonder who AAIDD thinks persons with intellectual disabilities are? Are their lives to be prevented? Are we to turn their care over to technologists?

Dr. Burton Blatt, a university special educator, and advocate for the closing of institutions in the 1960's wrote the following:
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)

But the take home lesson is that one of the premier organizations on intellectual disabilities doesn't get it. They don't seem to know people with intellectual disabilities like I and others who were with me at the conference seem to know people with such disabilities. This lack of understanding is very sad.


Chicken soup

I recently had the opportunity to attend the American Association on Intellectual and Developmental Disability national conference in Washington D.C. I went with two great friends, Michael Hoggatt and Marvin Miller and although we had a great time, there were some aspects of the conference that were somewhat disappointing. But I will share that in a separate entry.

One highlight of the conference was a brief presentation by Diane Richler who is the president of a group called Inclusion International. I can't speak for the organization, don't know much about it, however, Diane provided a wonderful illustration about the notion of including everyone who would choose to be a part of a group. She said that when she was younger, her family was preparing a special dinner. Her mother cooked one of her famous roasted chickens. However, just as dinner was about to begin, a group of aunts, uncles and cousins arrived at the house. Because she had prepared a roasted chicken, there wasn't enough food for everyone. In her family's case, the family was told to "hold back" such that not everyone was able to eat, just the guests. Her point, however, was that with planning, there could have been food for everyone. If, for example, her mother had made chicken soup, everyone could have had dinner. However, because she made a roast chicken, everyone could not be served.

Although her point was not about the church, I immediately made the connection. If churches serve "roasted chicken" then there will not be enough for everyone to be a part. "Roasted chicken" in the way we do religious education, or provide opportunities for service, or structural church programs and logistics. However, if we are really interested in a setting that plans for participation for more people, we could make "chicken soup." A "chicken soup" form of religious education, or opportunities for service, or structural church programs and logistics.

As Diane stated, the "chicken soup" approach implies "everybody's in." We choose to have chicken soup over roasted chicken because we know that not everyone will be able to partake if we have roasted chicken. We as a group, therefore, choose to forgo the roasted for the soup.