disabled Christianity

Hello from Cape Town!

2008-08-23T03:59:00.000-07:00

Well, for the next week or so, I am in Cape Town South Africa at the International Association for the Scientific Study of Intellectual Disability. I am doing 3 presentations, 2 related to church and disability issues. I am also hoping to be involved in the start up of a division of the organization devoted to issues of church and disability. I can tell you that after 24 hours here, I have only seen one disabled man, who I gave my change to, walking on crutches. I am very excited to meet Africans and learn about disability here.

So, should you make a comment and I am a bit slow in posting it, please be patient. I will share more of my experiences here later.

McNair

Beginning traditions

2008-08-17T22:06:00.000-07:00

While working on a brief article for the the American Association on Intellectual and Developmental Disability's Religion and Spirituality division newsletter, it occurred to me that we, as the Christian church in the world, are in the position of beginning traditions relative to the place of persons with disabilities within the church. To date, our traditions have been largely exclusive and ignoring as if there were few if any people with, for example, intellectual disabilities. However, as we begin to move into a new time of inclusive practices that will literally change many aspects of the way we do church, I think it is important to consider how we are informing the models we use which will ultimately become our traditions.

Will we move of on a direction where we totally segregate people with intellectual disabilities from the traditional church as if they were some pariah, claiming we are doing what is best for them? I hope not. If we do, people without disabilities will continue to grow up in churches without any experience with people with disabilities. The church will also largely remain unchanged rather than becoming all it might be by including essential parts (1 Corinthians 12:23).

Will we borrow our practices from the public schools, instutiting inclusion classes within the Sunday School program? I hope not. If we do, we are building programs with the same problems that the public schools face (one reason why some research indicates that only 10% of schools have inclusive classrooms in the US). In addition, we are following a knowledge based model, which may not only not be the best for those with intellectual disabilities, it may not be the best for any of us, children or adults. Social integration has largely NOT been the result of public school inclusion programs.

Will we borrow our practices from psychology, expanding the pastoral counseling role? I hope not. If we do we will perpetuate that people with disabilities have something wrong with them, when they are just perhaps not as typical (in terms of intellect, the manner in which they move about the community, or the way they perceive the world). There is a difference, in my mind, between having something WRONG and having something different. We as the church can lead the way in helping the world to see people as having differences not wrongs.

All this is to say, that Lord willing, we will be looking at the practices of the church in 100 years, and wonder how they got the way they are relative to persons with disabilities. I would advise the church to step back and look at the way they do all programs. How would the presence of persons with disabilities cause those programs to be different? Perhaps that is the way they should have been in the first place.

We can literally do just about anything, unrestrained, without limits in terms of the manner in which we will include those who have been excluded in the past. Lets dream big, go deep in prayer and come up with crazy solutions that have never been dared in the past. Lets think about the ideal situation and plan for that. I will admit that too often I have only dreamed as big as what I think I will be permitted to do by my church, or those in leadership over me. I have not pushed the envelope as I might. As a result, I fear that the traditions that I have been involved in developing within my church will be soon outdated. Not because I didn't have bigger dreams, but rather because I settled for what I would be permitted to do, not fighting for what I had dreamed.

McNair

Unencumbered by knowledge...

2008-08-12T09:55:00.000-07:00

Kathi and I have been getting lots of emails about the new movie Tropic Thunder regarding comments made in the movie that demean persons with intellectual disabilities. I suspect that the movie is easily missed, however, it is important to note that the jokes are jokes and comments that many people routinely make. I don't think that the movie is leading the culture in this area, but more likely is reflecting the culture. I am confident that many people have either heard or hear others referring to someone as a "retard" or "retarded" but perhaps have not given it much thought. But such jokes are easy. Another post on this weblog has addressed this issue along with the presence of a video of an amazing speech that I would refer you to.

Although I too am angered by the jokes, they are reflective of a larger problem of speaking about things about which they have no knowledge. Back in May of 2004, I related on this blog the story of David Hyde Pierce, who played Niles on Cheers and Frazier the Cheers spinoff. He was back then a spokesperson for alzheimers disease. Back then I wrote the following.

By contrast, David Hyde Pierce (Niles Crane on the television program Frazier) has been a strong advocate for persons with alzheimer's disease. Recently, on the occasion of his birthday, there had been attacks on President Reagan by comedians regarding his alzheimers disease. Once again, without entering into the policital fray (I have no idea what Mr. Pierce's political affiliation is) he stated that there are two types of people who make jokes about others with alzheimers. First, there are those who have never experienced the disease. Wisely he says he hopes they will continue to be able to make such unkind jokes as that would imply they have never experienced the disease. May they live on without ever having to face the ongoing debilitation and humiliation of one you deeply love. Second, are those who make jokes to try to ease their own pain or the pain of their loved ones who do have the disease.

Now, I wouldn't compare life with a person with alzheimer's disease with a life with a person with mental retardation/intellectual disabilities. But the principle illustrated by Mr. Hyde Pierce's comments fits perfectly. We will often make jokes about things that we don't understand.

We will also make pronouncements, at times about things we know nothing about. Recently the radio talk show host, Michael Savage, made ridiculous comments about autism and children with autism. Savage is know for his inflammatory rhetoric about political matters, however, at least in this case, he ventured into areas about which he knows nothing. I have had my heart broken by the insensitive people in grocery stores with their comments about controlling one's child as a parent struggles with their screaming child with autism. They have no idea of the courage it sometimes takes for a parent to even take a child with autism to a grocery store, only to be criticized by onlookers, potentially empowered by comments from some radio personality who literally has no idea what he is talking about. I have even heard the respected commentator, Michael Medved make comments about homeless mentally ill people and how they need to be in institutions. I would easily embrace nearly any inconvenience they could cause me if it meant keeping them out of institutions that can be so horrible. Are there people who could benefit from increased supervision of one kind or another? Of course there are. However, I might advocate for such supervision, not so they would be gotten out of my face, but more because of the manner in which the quality of their lives would be improved.

But as a friend of mine, Dr. Bob Henderson once related to me,

"Unencumbered by knowledge, they speak with great authority."

Once we do see the life of a person with intellectual disabilities or experience the love they give to others, we change our perspective. Once we see the way in which they are discriminated against by society, we should change our perspective. We begin to see these things as issues of social justice. That is, jokes that perpetuate negative stereotypes about innocents are working against social justice for those who are the butt of such jokes. So I think the issues are worthy of attending to and are worthy of bringing to the attention of those who make comments in the name of making someone laugh that demean others who are largely defenseless. We literally demean people and support negative attitudes about people in the name of "fun".

I will not be seeing this movie or any movie that demeans persons with intellectual disabilities. I will not be viewing any television program that demeans persons with intellectual disabilities.

I will not be viewing any "entertainment" which uses the demeaning of persons with intellectual disabilities as a vehicle for laughter at their expense.

McNair

Choosing to be "smart"

2008-08-09T22:41:00.000-07:00

I just finished reading the book Just Courage by Gary Haugen, founder of International Justice Mission. He makes the following comments (pp. 118-119).

The fact is, when people choose to be brave instead of smart, their courage is generally so threatening to those who are smart rather than brave that they end up being maligned, not congratulated. This is what the Bible says we can expect... So sometimes we have to decide: Are we going to love, or are we going to look smart? Because loving the needy doesn't look smart. And, sadly, in much of our culture this is one of our deepest fears: looking like a fool, naive, unsophisticated, a little too earnest, a looser... Generally, there is no wealth and very little regard in helping the needy... Sometimes the will of God is scary because he is asking us to choose between a life that looks successful and a life that is actually significant, between a life that wins the applause of our peers and a life that actually transforms lives through love.

That is often the issue with ministry to people with disabilities, particularly people with intellectual disabilities, the ones that I believe God has called me to serve. How is is smart to be in ministry to people with mental retardation? But Haugen asks the real question that is behind a lot of the disinterest in devalued people. He says, "Are we going to love, or are we going to look smart?" Is it smart to minister to people who aren't going to "get better." What will people think of me if many of my friends are mentally handicapped? Will I be the victim of some form of sympathy stigma? I do run that risk. It is true that "Generally, there is no wealth and very little regard in helping the needy." To quote A League of Their Own, "Its supposed to be hard! If it wasn't hard, everyone would do it."

But there is the potential that a life will be transformed through love. The change to bet on is the change in your own life. The love learned is the love you learn. But they are not always easy lessons, so be prepared to be maligned.

It is also interesting how people will dismiss themselves from work with the needy, particularly those who are needy with intellectual disabilities. It is funny to most special educators, because the typical line you hear when you tell someone that you are a special ed teacher is that they say, "I don't have the patience for that." Not, "I would like to learn the patience for that because I hear patience is involved" or even, "I have heard that you need to be patient. Is that true?"

Significance of a life can be defined in a variety of ways. But I think most often significance is determined on the basis of what you did for others. And others, is a pretty open ended criteria. People respect a person who gave their life for the needy. So why aren't we doing more of that if that is what is remembered. People will sometimes lament the time others spent trying to make money, but rarely the time spent with people.

McNair

disabilityministry.com

2008-08-05T14:35:00.001-07:00

There are several of us who are interested in developing a web page that lists model programs serving persons with disabilities nationally. There may come a day when a service of technical assistance and evaluation could be offered to programs, but for the moment, we would just like to list programs sent to us.

We have purchased a website called http://disabilityministry.com where we hope to list these programs in addition to providing links to other websites and materials that would be useful to those in disability ministry.

Our hope is that you will forward the following information about your program to us for us to post on this new website. Please provide the following:

Church Name/Program Name
Website address
Email address to contact regarding the program
50 word program description

As we begin receiving this information, we will begin posting the list of programs. It is our hope that this website will be both an encouragement to churches to get into the disability ministry business, and also a place for people to find a ministry in their geographical area to attend or to visit as an example for them to start their own ministry. If you know of a ministry in your area, please ask them to send their information to us so we can list it.

Please send the above information to:
jeffmcnair@gmail.com
List as the "Subject" disabilityministry.com

Soon we will begin to list ministries there.

May God bless our efforts.
McNair

What to do? How to begin?

2008-08-05T13:35:00.000-07:00

I recently had the opportunity to teach a portion of the second Joni and Friends certificate program to be offered by them at the Christian Institute on Disability at Agoura Hills, Ca. What a great group of folks participated in the training. There was one person, however, who felt very put off by the things I was saying. The feeling was that I was just attacking the church. We talked and I think the person came to understand my perspective, that I was trying to improve the church's outreach to persons with disabilities by challenging those in attendance who in many ways self-selected to be taught important principles about developing ministries. As I shared with the one person who was having difficulty, "If you are in your church, I will praise your efforts. However, as soon as you enter the training, it is my job to help you to mold your ministry into the best it can be, using what are (in my opinion) best practices. I will therefore be critical." There are things we can do which do represent best practices, and there are things we can do that are not best practices.

For example, if we develop curriculum that implies that adults with disabilities are children, we are wrong because they are not children, and we demean them by communicating to them that they are children. I have been teaching adults with intellectual disabilities in ministry settings for 30 years, and I have yet to find the need to develop cutesy stories that I would never use for adults who are not disabled in order to educate those who have intellectual disabilities. We teach from the same Bible that the nondisabled adults use, studying the same passages, generally, that they study.

Now I am circumspect in the things that I teach because I know of the intellectual capacity of my audience. So for example, I don't see the need to teach the story about how David had the opportunity to kill Saul but didn't (1 Samuel 24:4) because that is irrelevant to their lives. I can teach about doing unto others (Matthew 7:12) and therefore make the same point in a relevant way. The Psalms, for example, provide a wealth of information that is entirely relevant to anyone, including adults with intellectual disabilities. For example, this past week, I taught on Psalm 116, asking the group whether God had ever saved any of them from death (v3)? There were those in auto accidents, those in hospital for surgeries and so on and they easily made the connection that God had saved them. Or had any of them been delivered from tears, or God kept them from stumbling into sin (v8). We then moved to verse 13 that asks "How can I repay the Lord for his goodness to me?" The answer is in verse 14, "I will fulfill my vows to the Lord." We talked about the fact that we have given our lives to Jesus. So that means we will try to do what is right, to do what Jesus would want us to do.

I don't need stories that are juvenile in nature to convey these truths to my audience. I talk to them as adults and they respond to me to the degree they are able as adults. And people will rise to the occasion. This past Sunday, for example, we were having a time of prayer for people in our group. One of our members is a 4th year medical student at Loma Linda university. He mentioned how he had important upcoming exams and wanted someone to pray for him. One of our men, a regular attender, who I will tell you just to give you an idea of the level of his disability, spends his days in adult day care, immediately stood up and moved to the side of the medical student. He prayed, "God take care of him" ending with a loud "AMEN." He has learned how to pray for others who he is able to perceive are in need. He has been treated as an adult and has now developed the ability to treat others as adults.

But getting back to the initial point, we need to celebrate what we are already doing, but also improve what we are already doing. There are people out there who have thought deeply, have researched, have years of experience that we can benefit from. Yes there are those with years of doing something which may not be the best of practices. Hopefully God will provide the opportunity for assistance to those programs as the Christian church grows and develops in areas related to disability ministry. There is so much room for thought in this area.

But as stated above, the point is to begin and to even do things wrongly. Even if we are not doing things according to the "state of the art" we are moving in a direction and we can be directed. We will also see the logic of the correctives which might be suggested as well if we are "in the trenches" trying to figure things out.

There is really no excuse for inactivity in this area. Trust in the Lord and look to Him to direct you. Also recognize that as in any area of human endeavor, there are people who have gone before. Look to see what they have done. Evaluate what they have done to see that it treats people with disabilities with respect, does not demean them, and then emulate what you see as appropriate.

McNair
(fcbu)

Statement about slavery

2008-07-25T14:13:00.000-07:00

My daughter Amy and her friend Heather, are working in Africa this Summer. They are teaching English, doing community development among other things. They have a blog called 2 to Africa which is mostly a lot of fun. However, Amy put up the following which I think bears repeating in a variety of venues even though it is not directly related to issues of disability. Very sobering. Unfortunately, reports are that there are more slaves today than at any time in history. May God empower us to do what we can to make the quote below a reality.

McNair

Last weekend we travelled to the central region to visit the oldest and biggest slave castle in all of sub-saharan africa. It was amazing to see. There was an awesome quote on the wall I memorized.
"In everlasting memory of the anguish of our ancestors. May those who died rest in peace. May those who return find their roots. May humanity never again perpetrate such injustice against humanity.
We the living vow to uphold this."

Ukraine, pastors and disability literature

2008-07-23T14:18:00.000-07:00

While in the Ukraine, I was given the opportunity to speak to four relatively young pastors about issues of church and disability. It was such a fun opportunity. I became friendly with two of them over the course of the week we were together. Yuriy is tall and thin, looks like a basketball player although he was quick to tell me that he plays football (ie. soccer), and Alexander, known as Sasha (a very common nickname) is also tall, looks more like an American football player with a great heart for people with disabilities because of a visual impairment that apparently runs in his family (parent and siblings) but that he has not been affected by. The pastors were very interested in the one hour presentation I was allowed to give to them and I was honored to be able to speak to them. It is so difficult to know how something is being received when provided through a translator. I could tell I was connecting to them as Sasha at times they had tears in his eyes. Please pray that they will run with the material that was provided. It would be amazing to see these pastors and others who are working on disability mininstry come together to impact not only the Ukraine, but larger Europe. Ukraine seems very open at the moment which is very exciting. As they move toward potential membership in European communities, there is also the potential for influence there.

After the training, we had many interactions about various issues of faith and disability, and at one point, Yuriy approached me about writing a brief article for a Christian newspaper they produced, I believe for a conservative Baptist denomination that two of them are affiliated with. I think they were very open minded about the information shared. Anyway, I thought I would provide a link to an English version of that article here in case you should be interested. It is very brief (about 4 pages). My hope is that I will have the opportunity to expand upon it in the future with other articles about other aspects of Christianity and disability, and that perhaps a broader group of people will have the opportunity to read it. I think an electronic version is going to be put online as well so when that is available, I will provide a link for the novelty of it.

Please pray for the article that it will reach the people who would benefit from reading it. I don't think it has a very large circulation, perhaps 2,000 copies printed, but it may be one of the few pieces of literature produced that addresses church and disability issues. In each of the camps. parents were provided the book Joni, which is basically Joni Eareckson-Tada's biography so hopefully that book is being circulated as well.

While there, we also discussed the possiblity of a pastor's conference on disability. Kathi had the idea of inviting pastor's wives as well so we can talk to both groups. Women are quite often more open to disability issues than men, and they would have the potential to influence their pastor husbands. Other opportunities are also on the horizon in Ukraine, but we will wait to see what the Lord develops there. I think Kathi and I are available for further involvement.

One final note. I have heard from several people about groups going to Ukraine from America specifically to work in the orphanages. Our experience and the discussions we had with people in Ukraine tell us that this is very critical work. Children in orphanages are considered the equivalent of trash by some and we were told of cruel practices that sometimes occur there. The outcomes for children growing up in orphanages are at least as challenging as those in the US for children going through the foster care system. May God bless groups who are going to work in the orphanages. It is such important work.

McNair

Universal design and the Christian church

2008-07-19T12:06:00.000-07:00

Universal design is a recently developed principle. It is defined by The Center for Universal Design as, "The design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design." If you go here, you can see one of their webpages which provides the definition as well as 7 principles with explanations.
One of the lessons of universal design, is that changes that are made, say for example in an environment, for the expressed purpose of making things easier for a disabled person, end up often benefitting everyone in that environment. This is illustrated in the webpage provided above.

I was thinking through the universal design principle the other day, and it occurred to me that universal design should be a basic characteristic of the Church. I suspect in its purest form, if the church were all it should be, it would be a perfect example of universal design. That is the case because the Body of Christ is comprised of people with varying abilities. The church was envisioned for humanity, so it must be designed, be comprised of structures, evidence practices, develop programs, that reflect the variety of humanity. The degree to which we do not see universal design principles within the church, in many ways is evidence that it is not all that it should be. Lets consider the principles of universal design briefly in reference to the church.

1. Principle one: Equitable use
Provide the same means of use for all users: identical whenever possible; equivalent when not.
Avoid segregating or stigmatizing any users. (UD webpage)

The church should facilitate equitable use. That means access to the programs of the church, all the benefits of church participation. The implication therefore is that programs and benefits might have to be altered such that all people can have access to them. If there is not access, the person is not wrong, the program is wrong or needs to be altered in some way. Wheelchair use should not mean that I cannot be a youth leader.

Programs and practices of the church should also not segregate and stigmatize people, particularly on the basis of perceived negative characteristics. Downs syndrome does not mean that I cannot be in the Sunday school class.

2. Principle two: Flexibility in use
Provide choice in methods of use.
Facilitate the user's accuracy and precision.
Provide adaptability to the user's pace. (UD webpage)

Flexibility implies flexibility in the delivery of information, in the social standards (no I am not talking about sin, I am talking about social skills). By understanding "users" we understand that responses can be very different. We understand, for example, that faith development is a process that is not exclusively knowledge based, so that programs that facilitate faith development are sensitive to where people are in their faith, and the contribution of knowledge to faith develoment. We also do not offer "once size fits all" worship, or Sunday school, or music. We may find that people will prefer the faith development activities designed for persons with intellectual disabilities, for example, because they are connected with real life and are less potentially esoteric. Worship alongside of a person who is atypical changes the nature of worship from quiet listening to a sermon, to service, or patient love, or a variety of other goods. Do we ever assess user's pace in sermon delivery? Do we ever assess faith development in individuals who have listened to sermon's for 20 years as a means to evaluate our programs? Sometimes I feel like if I am not understanding something that has become programmatically entrenched in the way the church has always done things, that I am at fault. But it may not be so. Universal design would say that there are others who have the same questions as I, but the programmatic "heavy hand" squelches questions of why.

3. Principle three: Simple and intuitive
Eliminate unnecessary complexity.
Be consistent with user expectations and intuition.
Accommodate a wide range of literacy and language skills.
Arrange information consistent with its importance.
Provide effective prompting and feedback during and after task completion. (UD webpage)

Are programs of the church simple and intuitive? I know that often in programs for persons with intellectual disabilities, the knowledge based orientation of the programs makes them unnecessarily complex. Somehow complexity is a high value in knowledge based approaches. But what are the user expectations of the typical church member? Are they being addressed and do we even know whether or not they are?
I have often wondered about the way church programs accommodate literacy skills (let alone language skills). How do we make material accessible in a manner that is not demeaning for those for whom literacy is an issue?
I have also wondered about the notion of arranging information consistent with its importance. In training persons with severe disabilities, there is the concept of functional curriculum. That is, teachers ask themselves whether it will make any difference in the person's life if they learn a particular thing. This notion is something that churches should consider in program development. Do we ever evaluate the comparative importance of the information we are sharing or do we just blindly teach our 3rd grade Sunday school class? I remember looking through a children's picture Bible, where there was a picture of Absolom hanging by his hair from a tree! What is the point of this in terms of importance of relevance of the story to children?
Once something is learned, how to we ensure learning is maintained, or do we simply move onto the next thing?

4. Principle four: Perceptible information
Use different modes (pictorial, verbal, tactile) for redundant presentation of essential information.
Provide adequate contrast between essential information and its surroundings. (UD webpage)

How do we make relevant information perceptable, and how do we help people to understand what is relevant? Do we highlight or point out for people that this is the focus, this is the lesson, and how do we facilitate understanding?
In our current churches, we have lots of video and lots of music, etc. Is that the way to make specific content relevant because there is a difference between being culturally relevant (via technology for example) and personally relevant in terms of helping people understand what is essential. The video screens are not essential, although they may assist in bringing what is essential to the notice of those viewing. I am confident, however, that there is confusion about whether the information or the video screens are what is essential to many people.

5. Principle five: Tolerance for error
Arrange elements to minimize hazards and errors: most used elements, most accessible; hazardous elements eliminated, isolated, or shielded.
Provide warnings of hazards and errors.
Provide fail safe features.
Discourage unconscious action in tasks that require vigilance. (UD webpage)

What hazards or errors might characterize a church that is trying to include people with disabilities? In the past hazards and errors have been the focus on social skills of attendees, on the potential perceive contribution of attendees, on the demands people by virtue of their disabilities may make on attendees, the failure of leadership in recognizing the priority that should be place on ministry that involves service. Past errors have also been related to resistance to change.
People might also need to be prepared to see errors within themselves so that they can be aware of them. "We are going to have people start coming here who are autistic. Autistic people sometimes make strange noises that largely will make us feel uncomfortable, because we have not been around them enough to have their noises no longer bother us. But we will get better over time as we become acclimated to them and them to us. What we cannot do is reject them, because that is sin and we don't want to sin."

6. Principle six: Low physical effort
Allow user to maintain a neutral body position.
Use reasonable operating forces.
Minimize repetitive actions.
Minimize sustained physical effort. (UD webpage)

How can the effort to do church attendance be minimized for persons with disabilities? Whether it be not having to ride the bus to church, or just getting around? We also need to teach average church members the truth, biblically and theologically about what disability is so that they do not cause the goofy ideas that have grown out of ignorance to persist. I know of people with disabilities who will not go back to church because of the things said to them there. Things about sin and disability or sufficient faith and disability, or just a blatant lack of understanding of what life is like for a person with a disability. I will also say that many people, church people, Christian people who use the handicapped parking spots should be ashamed. I literally know of people who have come to a church, but did not stay because all of the handicapped parking spots were used. You might say, "You should be celebrating that! All the spots are filled." Yeah, but I see the mirror hangers that someone holds onto from the broken leg they had a year ago and that isn't right.

7. Principle seven: Size and space for approach and use
Provide a clear line of sight to important elements for any seated or standing user.
Make reach to all components comfortable for any seated or standing user.
Accommodate variations in hand and grip size.
Provide adequate space for the use of assistive devices or personal assistance. (UD webpage)

People should have access to what they need at a church, whether it be physical, intellectual, or emotional. I was speaking to a friend the other day with a hearing impairment. He asked the church whether they could provide an interpreter so he could attend Bible study, and they said they couldn't. But then he asked whether there was someone who could disciple him, teach him the Bible one on one, because he can understand one person at a time in a one on one conversation and they once again said no. That is just stupid. One on one is called discipleship and churches do that all around the world. His church was blocking his access to God's word because they would not facilitate approach.

So much more could be said on these points, however, I think the take home lesson, is that the Christian church should strive to be the model of universal design. It should be the example that people use whenever they discuss such principles. I believe that it is God's intention that the church be a place of openness and acceptance. A supple place where the environment is much softer than the community. Where people come and can cease their fighting and relax in love acceptance and accommodations as appropriate. A place that does not nullify the word of God by its traditions (Mark 7:13).

McNair

More thoughts on Ukraine

2008-07-16T12:09:00.000-07:00

I wanted to share some more of my experiences with families of individuals with disabilities in the Ukraine. Kathi and I were given the privelege of meeting with families individually across the 2 weeks we were working in camps. We each probably met with 30 or more families in individual consultations, discussing their experience with a disabled family member and with the social consequences of such life experienced in their villages and cities. Below are just a few examples of the discussions we had with people half a world away.

-There was the situation I already related here of the family where the father is not present, the teenage son is rebellious, the daughter with intellectual disabilities and her younger brother live together at home, and because of the isolated nature of the village, the brother is mimicing the behaviors of the sister...the mother was desperate
-There was the teen with down's syndrome whose friends have taught her to say that she is having sex with any man she happens to meet to the chagrin of her parents and the men
-There were the children with cerebral palsy who are walked around in front of their parents all day. They lack balance to be able to walk themselves but the parents walk them with the understanding that it will result in the child being able to walk by her/himself
-There was the severely disabled girl with cerebral palsy pushed around in a stroller, whose wonderful mother is trying to get her to talk
-There was the bright young man with cerebral palsy who is in a wheelchair with small wheels (many are) which causes him to be totally dependent upon others for movement unless he crawls across the floor
-There was the woman living in poverty with the high functioning autistic son with significant artistic ability wondering how to encourge his gifts in spite of her social situation
-There was the family with twins, both having mild cerebral palsy, who wondered whether their children would ever walk
-There was the man with intellectual disabilities who "ruled the roost" to the frustration of his parents who empowered him in his refusal to do anything
-There was the sweet man with intellectual disabilities who could be easily victimized and was the butt of humor in his village to the sadness of his family
-There was the boy who was doing very well after surgery to correct a physical disability, but who also lived with a sister with severe mental illness who the family felt stigmatized them
-There was the sweet girl with down's syndrome who was the natural center of attention everywhere she went because of her endearing qualities
-There was the sweet man with down's syndrome who lost his parents and is now living with his aunt who can find nothing good about him and was constantly picking at him about nonsensical things
-There was the literally, brilliant boy with spina bifida, who was totally in control of his young mother who was at her wits end
-There was the group of women asking if I would please send the drug from America that would raise their children's IQ so they would no longer have intellectual disabilities
-And there was the small group of fathers who shared their struggles, but also their total commitment to their children and their families. I told them they were like rare gems and I was blessed to be with them.

There were also other stories I could share. So you can see that the issues are very similar to those of parents in America. Kathi and I did our best to confront parents when we needed to, help parents to set limits, give them ideas for developing communication, and facilitating independence, to help to think past traditional notions of work in any setting toward different ways of looking at work and life and contributions to the family and community by family members with disabilities. We also tried to praise parents for the stands they have taken in their communities and their efforts to raise their children in difficult social situations of divorce, ostracism and misunderstanding.

I can tell you it was like no other international experience I have ever had. I feel like I have some understanding of people in Ukraine and of their day to day life experience. I was so blessed to be confided in, and to be listened to. The families made me feel like I understood them and had something to contribute to improving their lives.

McNair

Joni Speaks at CBU Commencement

2008-07-16T11:53:00.000-07:00

In the May 14th entry to this blog, I related that Joni Eareckson-Tada had been the commencement speaker. It was such a great blessing to have her. She packed so much heart and encouragement into her few comments. It was a delight for her to be on campus.

This week, video of her commencement address was placed on YouTube by CBU staff so I wanted to make you aware of the opportunity to hear her remarks. At right, you can see the three links to her address. If no longer at the right, they will appear at the bottom of the page.

Once again, I cannot tell you what an honor it was to have someone of Joni's stature in the field of disability ministry on CBU's campus.

McNair

Ukraine

2008-07-03T07:38:00.000-07:00

I am writing this brief entry from Lutsk in the Ukraine. I have been here now for 2 weeks, working at camps for children with disabilities and their families. It has been rewarding, fascinating, encouraging, and heartbreaking. One of my responsibilities as "the professor in residence" has been to council parents about the issues they are facing with their children with disabilities. I suspect I have spoken with 25 parents, mostly individually, and at times in groups of 2-4. In general, they face the same issues as parents in the USA, frustration with government services, stigmatization and community isolation, issues of teaching their children and assisting them to behave appropriately. Some of their stories have been so sad, like the mother whose husband supports her financially, but will not live at home with her, her rebellious teenager who has rejected the family, her disabled daughter, and her preschool son, who because of the isolated village she lives in, has no peers his age, so he spends all his time with the disabled daughter, and has been learning her disability related behaviors such that he acts as if he is intellectually disabled. So hard to know how to help such people.

But on the positive side, there are people here very interested in reaching out to people with disabilities from a church context, who have been eager for information about how they might do so. They have asked me many questions and take up the information like very dry sponges. I feel like I am really being given the opportunity to challenge them and they appear to be up for the challenge! It is really exciting.

Future developments might include a conference in Western Ukraine for pastors from Ukraine, Poland and Romania that I might be involved in, another conference in more central Ukraine, and early discussions about a collaboration with a Bible college here for assisting with the delivery of coursework, and potentially other joint projects.

I am tired, but very encouraged by this visit. Exciting things are happening here, and Ukraine has the potential to be a leader in Europe in disability ministry.

More when I get back July 11th.

McNair

Go and make vs. build and they will come

2008-06-15T22:21:00.001-07:00

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.

McNair

Cal Baptist receives WASC approval for Disability Studies MA

2008-06-12T15:17:00.000-07:00

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!

McNair
(fcbu)

Neurodiversity

2008-06-12T13:20:00.000-07:00

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.

McNair

(fcbu)

A sad lack of understanding

2008-06-09T22:26:00.000-07:00

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, 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.

McNair

Chicken soup

2008-06-09T22:13:00.000-07:00

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.

McNair

The 99 and the 1

2008-05-23T15:23:00.000-07:00

I now have posted two blog entries where a person with disability and his/her parent were asked to leave a church service (and in the one case be arrested if they came back).
See June 21, 2007 and May 19, 2008.

I was sharing the story of the young man with autism and the restraining order with a colleague and friend, Dr. Danny Blair, and he responded that it is the 99 and 1 story. You remember it, from Matthew 18:12-14. In case you don't it says...

10"See that you do not look down on one of these little ones. For I tell you that their angels in heaven always see the face of my Father in heaven.
12"What do you think? If a man owns a hundred sheep, and one of them wanders
away, will he not leave the ninety-nine on the hills and go to look for the one
that wandered off? 13And if he finds it, I tell you the truth, he is happier
about that one sheep than about the ninety-nine that did not wander off. 14In
the same way your Father in heaven is not willing that any of these little ones
should be lost.

So the example is to leave the "ninety and nine" to go after the one. Well what if the lost one, is really lost, like lost in autism, a disability that largely is a language disability (have you ever been in a setting where you can't speak a language that everyone else is speaking and even have difficulty communicating because you don't understand even the gestures people are using around you...if you have, you will know what it is to feel lost), lost in exclusion and lost in social isolation and perhaps lost spiritually as well. So you come to a church whose God has given the example of leaving the 99 for the lost one, and if you are able to understand the meaning of Matthew 18, you might expect that you would be welcomed.

But instead, perhaps you are asked to leave, or even arrested "for God's sake" (I choose my words carefully) if you attempt to not be lost. You have to wonder if that group has ever read the Bible they claim to represent.

As I have said elsewhere in this blog, I would love to have a person with disabilities evidencing some form of inappropriate social skill, like talking out, or standing up and sitting down, or making a noise, and hearing the pastor to say, "In the spirit of Matthew 18, lets see if we can tolerate, can live with this distraction and in a spirit of love continue on with our service."

As a person who played a lot of basketball, I have always been surprised at people who golf. When I was at the free throw line, I heard every comment possible screamed at me and people deliberately trying to distract me so I would make a mistake and miss the shot. But then there is golf where if you make a sound, even the people around you will shush you. Imagine people deliberately trying to distract a golfer? Both athletes are doing something that requires concentration, however, one has to do it with the roar of a hostile crowd. My point is not that we should heckle our pastor or any other teacher as she/he teaches. My point is that we have the ability to perform under a variety of conditions, and absolute silence is simply a preference it is not a necessity as a condition. I mean for goodness sake, visit an African-American church. We once had a black pastor speak at our church, and he made the comment something to the effect, "Speak up every so often so I know that you are listening" because everyone sat in silence like you are supposed to in most predominantly white churches. Great comment!

The presence of noise at a church service is a cultural thing, and cultural things can be changed, and at times should be changed in particular if they result in people being excluded. I can change the culture of my church, it is not a God ordained program for people to sit in silence, largely motionless for 40 minutes. We can change if we want to. So if people with autism or any other disability cannot fit our structures, our structures can change. And in a Matthew 18 kind of way, we can leave the ninety and nine behind and go for the one who is "lost," however he may be lost, be it socially, communicatively or spiritually.

What could possibly have been the point of Jesus telling the story of the ninety and nine and the one, if not to impress upon us the importance of the lost one? "...your Father in heaven is not willing that any of these little ones should be lost."

Are you? And if you are, what are you willing to do to see they, and their families will not be lost?
McNair
(fcbu)

The ultimate in legal rejection

2008-05-19T14:06:00.000-07:00

Sometimes I post things on this blog and people don't believe me. "It can't be as bad as you suggest" they sometimes say. It is always my prayer that I am wrong, that there is much more going on than meets the eye. But, for example, if there are 100 churches in the area of the country where I live (the Inland Empire of Southern California) who are working to reach out and include people with disabilities, then that means that only 10-12% of churches in my region of the country are reaching out to people with disabilities.

At times, we are also doing just the opposite, and at times the ridiculous nature of what we are doing is hit by the light of day. Why would the story about a child with autism's relationship with a local church be noteworthy? Was it because the church had dramatically changed the way they do things such that such individuals could be involved? Could it be that special programs were developed so that children with autism could be involved at the church? Those stories could be written, but all it takes is one of the following stories to short circuit the wonderful work of other churches.

The following is in reference to an article is by Terry Gruca, a reporter at wcco.com. In it she describes how a church took out a restraining order to prevent a 13 year old boy, who is a big guy from the description given from attending the church because he becomes violent or has loud outbursts. If such a child attends church, at least the church in the article, he is to be arrested.

As comedians sometimes say, "I couldn't make this stuff up." But this is not funny. This is tragic. It says that for some people there is NO place within the Body of Jesus Christ. If fact if you attempt to be a part of the Body of Christ, we will arrest you.

Talk about resistance to change.

This church is representing to the community that my Lord and Savior, Jesus Christ, would arrest disabled people for attempting to go to church. I wonder about the violence and loud outbursts. I mean loud outbursts are 50% of the reason why this young man would be arrested for attending church.

All I can say is God bless and God protect the mother of this man for her desire to take him to church, and her faith in God, in being unwilling to reject God in the way that what would be self-describing followers of God have rejected her.

"Sure you are critical of this situation, but what would you do, Jeff?"

Lets assume for a moment that the young man is violent and it remains to be seen what violence means in reference to a person with autism. But even so, does violence justify a person being excluded from the Body of Christ? My answer is NO. Don't expect me to have the young man working with the babies or children, however, I will create a place for potentially violent people so that they can be a part of the Body of Christ. I will not file restraining orders against them.

This is so very sad. May God forgive his church for such acts.

McNair

Joni speaks at Cal Baptist graduation/Disability studies MA

2008-05-14T20:54:00.000-07:00

California Baptist University was honored this past week by having Joni Eareckson-Tada as the speaker for the graduate commencement. Of course she was wonderful. She has the ability to speak in a deceptively friendly, almost folksy kind of way. However, her insights are deep, her biblical knowledge broad and she challenges her audience to live the Christian life as it was meant to be lived.

She was given an honorary doctorate degree by Cal Baptist (her 5th I believe) and she was gracious and grateful. Afterwards I had the chance to speak with her a bit and she was excited and honored.

One of the reasons she consented to be at Cal Baptist, I believe, has been the developing relationship between Joni and Friends and Cal Baptist in the development of an entirely online MA degree in Disability Studies. Joni was particularly interested in coursework related to disability ministry and pastoral counseling as it related to persons with disabilities. Of course her writing will be a staple in those and other classes and we were delighted to receive her input in the design of those classes. She actually began her remarks by telling those in attendance about the new degree which if not the first of its kind, is one of the few of its kind. We were honored to receive her endorsement. We are still awaiting WASC approval, but are hopeful we will receive it in the next month or so.

The MA degree in Disability Studies at California Baptist University will be offered entirely online. Students will be able to specialize in areas of leadership in disability (including understanding leadership development of leaders experiencing disability), disability policy study, and disability ministry, including studying Christian perspectives on disability.

As a part of the relationship with Joni and Friends, we hope to afford students opportunities for internships and other opportunities. Because Joni and Friends is an international organization, opportunities will be available internationally. Because the MA is online, students will be able complete the degree from just about anywhere in the world where they have decent internet access.

I am personally excited about the opportunities this degree offers for people around the world. Should you desire more information, please contact me, Jeff McNair at jmcnair@calbaptist.edu
With accreditation, we will launch our first cohort with the Fall semester of 2008. That will be a historic first cohort!

Please keep us in your prayers over the next days and weeks as we move through accreditation and program planning.

McNair

A spritual disconnect

2008-05-07T16:44:00.000-07:00

Rec'd this link from a student of mine, Geoff. http://www.ragamuffinsoul.com/?p=4757
The link depicts a man holding up his adult son with cerebral palsy while they are worshipping together. Check it out...you will have to scroll down the page a bit.

After the picture and the brief story, there are many comments. Listen to a few of them...

what an awesome example of what it really is all about.
beautiful… Jesus hands and feet
THIS this is worship.
I’m humbled.
Your post really touched my heart. May we all take lessons from Matt and Jefferson
True worship sacrifice! Amazing! Thanks for hitting us over the head again.
Wow. That is beautiful.
speechless…
Amazing… Grace… Compassion… Authenticity…
Unreal man. Completely amazing.
absolutely beautiful.
i think the entire Church can learn true authenticity from this picture.
… tears i my eyes …
This is the best thing i’ve ever seen. this is the best thing I’ve ever seen. this is the best…
Sometimes God sends people like that along for us to wake us up
Wow! That is precious! THAT is what it’s all about! Sacrifice - Worship - Praise - Hope! Yes. And so the question is almost.Was he real?Was he an angel?

There is a disconnect here for me as I see the picture and read the comments. Yes it is wonderful that a father would love his son and assist him to participate in worship. But there are thousands of people who have no "father" to assist them in worship. The comments almost feel like posing sometimes because if people really felt it was so wonderful, why wouldn't they do it as well? The comments should read, "I think the entire Church can learn true authenticity from this picture and I am going to find a disabled person that I can help too." or "This is the best thing I have ever seen and I am going to be a part of it by helping a disabled person." or "THIS this is worship and I want to be a part of facilitating worship for someone else." Is it only if you have a son with a disability that you facilitate a worship experience for someone? Would you ever facilitate worship for someone with a disability if you didn't have that person as a son or daughter?

If we are "Real" we will not just recognize the beauty of the situation, we will be a part of the beauty. If I tell you that your service to the poor is beautiful but never help with my giving or my time, I am a poser. If I am "Real" I will do something.

Another side of me that is disconnected is that a man assists his son who is disabled at at church and this is amazing. Why is it amazing rather than commonplace? It would be commonplace if it is happening all the time. Is it amazing that a father is helping his son? No, fathers help their sons all the time. I am confident that the father himself would say it is no big deal and in many ways, he is right.

Well, then...
Is it amazing because it is too infrequently observed at a church?
It is infrequent that disabled people are worshipping at church in community numbers.
Is it amazing because a disabled man's worship is being facilitated by someone else?
It is infrequent that someone assists another in worship.
Is it amazing because one man is having his worship "interrupted" in order to facilitate the worship of another?
It is infrequent that a disabled person's worship is a priority for someone else such that
worship becomes something other than an uninterruptable individual experience.
Is it amazing because worship becomes transformed into something that it typically cannot be because we have been taught that worship is something that I do by myself and if someone for whatever reason imposes himself on me (through noise, or activity, or functional disability, or whatever) he should be removed so that I can worship?
It is amazing because it is worship in a different form. It is two men who are achieving an
apparently nontraditional form of worship which entails one loving, being patient with, and
facilitating the worship of another. However, in that service, the one being served also
transforms the worship of the servant.

Probably to most people at church, the presence of a person with disability "imposing" themselves upon them, "interrupting" their worship is a cause for complaint. "How am I supposed to worship when so and so makes me have to hold him up so he can sing and dance along with everyone else?" "How am I supposed to worship in song when so and so sings and mostly is just making a loud, off tune noise?" "How am I supposed to worship during the sermon when so and so will not sit quietly and listen?" "How am I supposed to worship when so and so bothers me continuously with their inappropriate social skills?" I mean people complain if the music is not the right genre for goodness sake. You see these things are linked. It is supposedly so beautiful to see a father be imposed upon by his son and DELIGHT in that and us it as a means of service to his son. It is supposedly so beautiful that a son would not be ashamed of his need for assistance but would DELIGHT in the assistance he needs in order to participate in worship.

Lets not be posers, Christian. If service is beautiful when I see it in someone else, it is also beautiful for me. If "interrupted" worship is beautiful for someone else, because it displays love in a kinda way it is supposed to be, then I should be more open to interruption. Worship needs to adapt to the impositions of imperfect people who are socially more imperfect than I due to their disabilities. My level of imperfection is acceptable, theirs causes me to reject them.

Lets be truly "Real," Christian, and do the thing we celebrate without excuses. Lets make the beautiful, the amazing acts of love commonplace such that when we see them, we still appreciate them but we are not amazed by them because they are not the rarities that they presently are. If it is beautiful to be loving and patient with people, lets make that the mundane within the Church.

McNair

F.I.R.E.

2008-04-23T08:47:00.001-07:00

The Foundation for Inclusive Religious Education is a group sponsored by the Catholic Church. The goal of the foundation is that they grant

...children with special needs the remarkable opportunity to receive a Catholic education in their parish schools. In 1996, a group of parents founded F.I.R.E. to realize a common dream for their children with special needs to attend parish schools with their siblings and neighbors. Since F.I.R.E.'s founding, the non-profit has provided essential financial grants to schools within the Diocese of Kansas City-St. Joseph...

God bless the Kansas City - St. Joseph Diocese for their efforts in this area. May efforts like these increase within the Catholic church, and the Christian church in general. The figures for Christian schools offering education services for children with disabilities are dismal (for some more information, see a brief article I wrote for the NACSPED news). We should follow the example of this diocese.

May F.I.R.E. be inundated with requests for help as other Christian schools catch their vision.

McNair

Beating each other up

2008-04-22T21:51:00.000-07:00

So, in the past 2 months, I have been an advocate for a family with a school district that apparently has been beating up on some parents, and I am going to be an "inspirational" speaker for a different school district, encouraging teachers because the parents and their advocates have been beating up on the teachers. So like a scene out of Clint Eastwood's Fistfull of dollars I am in the midst of playing both sides (although my movie would not be a Fistfull of dollars because unlike Eastwood's character, I am not charging anything, which is not a complaint as I am happy to be an advocate and an encourager for both sides). It is all about the best services for children with disabilities.

Parents too often are placed in the position where they have to fight school districts or any other agents of the state for appropriate services. Schools have limited resources and they attempt to cut corners where they can. So if they can cut corners for your child, then they can serve another child whose has parents who are more active advocates. But I don't want them to cut corners for my child so I fight to get the services that I feel my child needs. Schools will sometimes play games with parents such that parents get tired of being pushed around, or tired of not receiving services, or tired of having their rights stepped on, so they find an advocate, or someone like me who only is interested in the best services being provided for a child. The difference is that by bringing an advocate, or someone like myself into the meetings, the school district acts differently. Even something as simple as the time alloted for the meeting changes from being brief, to as long as it takes. Services providers cannot brow beat parents because someone is in the room who knows the parents' rights. In one meeting, for example, one of the professionals on the school district's side, was pushing a particular IEP goal that the parents were not interested in. The parents tried several times to express that they were not interested in the goal, but the district kept pushing. Finally I spoke up and stated, "The parents do not want this objective so it is dead." Nothing more was said about the objective because that is the parents' right in the IEP meeting and although everyone knew it, the parents were not responding to the districts assertive position with assertions of their own. In spite of what are hopefully the best intentions, schools are villiainzed by parents because they may find that the only way they can get services is to fight. And unfortunately, the fact of the matter is that those who fight often get the best services.

On the other side of the coin are the teachers. Of course there are slackers as there in any job, but largely I believe that teachers are doing their best for their students. Some parents, however, are entirely unable to be satisfied. At times there are issues of not being able to accept their child's disability (I know of parents who want the district to work on reading for a 20+ year old who has not been able to learn to read for their entire school career), or being unreasonable about services (demanding one or more aides, or private school services, or myriad other programs that they may have heard about), or bringing in experts whose sole purpose is to make the district look foolish or to sue. These people are not helpful, because it is true that districts do not have unlimited resources. It is also true that as hard as teachers may try, they are not perfect. There are very few "perfect" classrooms for students with intellectual disabilities, for example, so it is easy to observe a classroom and find fault. Some aspects of programs are considered the most basic of best practices. I try to impress upon my student teachers the importance of instructional data to ensure teacher accountability. However, other aspects are simply opinion. But if I as a parent have an opinion because I saw something on a television program, or read some controversial book, I begin to demand this or that particular program for my child when the teacher may be feeling that there is no empirical evidence supporting a particular approach and the approach is also very expensive. There are many such approaches out there that have great zealots behind them and not a shred of research data supporting the fact that the approach does anything. But parents who may be desperate to find anything that might work with their child are sucked into promises, and then demand services at the local school.

So the educational system is such that teachers feel beat up by parents and advocates, and parents feel beat up by schools and professionals. The system is adversarial at nearly every level. It can even be adversarial between agencies, where some agencies think that they are God's gift as advocates and are quick to villianize other agencies. They become indignant should anyone make any accusations toward them, however. But being a friend of parents, I could tell you stories of unsatisfied parents and family members, and professionals who feel put upon by EVERY state agency.

But I, in response, will continue to advocate for parents for the best services for their offspring from any agency, and I will continue to encourage teachers to be the professionals they are, and to use best practices, and practice accountability.

McNair

Getting into "trouble"?

2008-04-15T21:55:00.000-07:00

Recently I have had an interesting experience that I guess I should have expected, but didn't and have been a bit taken by surprise. As I have mentioned elsewhere in this blog, there is a group home close by to my home that I like to visit once per week. The people who live in the home also attend my church. They are all adults who also experience moderate to severe intellectual disabilities.

Anyway, over the past couple of years, the lives of the group home residents have improved a bit, I would argue, as a result of their participation in church. I mean not only do they participate in activities on Sunday morning, but they also go with both church and community groups (Rotary and high school service clubs) to ball games (major and minor league baseball, high school basketball and football that we at the church facilitate), have attended concerts and an occasional play, a yearly shopping spree, as well as going to swim parties, movie nights at church, speaking in classes for students study special education, and just generally going out for a meal now and then. I as one of the main people facilitating these outings have gotten fingerprinted (see my entry on fingerprinting) and am an approved person to be with the folks.

Anyway, the group home has received increased scrutiny because of the small move toward regular lives that the people are experiencing. Social workers are concerned that the residents are interacting with people at church who are not finger printed. They are concerned that they are going to ball games with people who are not finger printed. They are concerned that when they come to address my classes, addresses that have proved to be truly life changing for the students whom they address (I will have to share about that in another entry sometime), that in actuality they are being "put on display" in some form of disparaging manner, I can only assume because the regulators must think that the residents have nothing to say to a class of university students.

I think that they are making these assumptions and raising these concerns as people who live in group homes are supposed to live there in isolation without the presence of people from the community who might actually be interested in developing a relationship, making friends with them because that, sadly, is the experience of most people living in such a situation. I really do understand the desire on the part of professionals to protect people from victimization. But I also recognize that no one can be totally protected, and that one just has to use his best judgement in looking at relationships with community members. Clearly, the community has been sensitized to the horrible behavior of what is comparatively a handful of religious people, however, one can be wise without being ridiculous. The fact that the vast majority of interactions between children and priests, for example, have been edifying and a blessing, does not diminish the fact that a small group of people are evil, but it does point to the fact that the vast majority of interactions are edifying and a blessing. It has also changed the manner in which all people interact in religious settings. For example, I myself when out in the community with friends with intellectual disabilities, will be careful to avoid being in a car alone with a disabled woman, even if just driving her home. I will always attempt to take women home first and then the men second. That is just common sense.

It is also interesting that professionals in disability related services will speak of their desire for things like community integration, and normalization , and friendship. However, it is interesting that when it actually occurs, they don't know what to do with it, and rather than allowing something natural to occur, something like friendship, they will attempt to regulate it, and in effect destroy it. In my own situation, I can already see the group home owner pulling back a bit, and who can blame her? Why should she risk getting into trouble with regulating agencies who will come the home looking for something wrong, and expressing a judgmental attitude at the positive things that might be happening? I am sure her thinking is, "If I just keep the people in the house and not give them access to the outside world, I would be much better off." No doubt that is the reason for the punishing attitude of the social workers and other regulating agencies as well. "Quit doing the community integration stuff. You need to be regulated by us if you are going to have your residents develop friendships. How dare you do something apart from our regulation." One can only assume that they would then be happy if the group home residents left daily for their adult day care setting where they are often treated as children, and then just come home and stay in the house. Case workers will decry the fact that group home owners will run to the store for a gallon of milk, take one of the residents and count that as one of the required monthly outings. But when people are engaged in real outings with real friends, I guess their "handlers" are considered trouble makers.

This is another barrier that churches must be prepared to face in attempting to do disability ministry. We have decades of uncaring attitudes of churches and protectionist attitudes by professionals. As we, the church, begin to reach out to those we have ignored, we must expect to find resistance on the part of the protectionists, because their structures for the way they do their services were designed without a group like the church taking an interest in group home clients to the point of wanting they to be participating members. So although they talk a good integration game, in reality they are a part of the problem, by their own design.

But the problem of the woman who runs the group home that I visit, is that she got into the group home business because she loves and wants to serve adults with intellectual disabilities. She wants the very best for them, in spite of the way in which the agencies would regulate or intimidate and try to scare her. Not only does she recognize that her residents are people who want to have a full life, she also recognizes that they are people who desire to express the spiritual side of their lives.

So, apparently integration of adults with intellectual disabilities into the community is a fight with the church to want to integrate them and a fight with the state to allow the integration to occur. Apparently the church is not the only one who claims to stand for one thing and do something else. The state can and apparently is hypocritical in its approach to community integration, saying they want it, but regulating and punishing and frustrating efforts at integration.

McNair