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

Friday, July 25, 2008

Statement about slavery

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.


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."

Wednesday, July 23, 2008

Ukraine, pastors and disability literature

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.


Saturday, July 19, 2008

Universal design and the Christian church

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).


Wednesday, July 16, 2008

More thoughts on Ukraine

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.


Joni Speaks at CBU Commencement

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.


Thursday, July 03, 2008


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.