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

Wednesday, September 30, 2009

Prophetic presence

prophet-a person who speaks by divine inspiration or as the interpreter through whom a divinity expresses his will

People with intellectual disabilities are a prophetic presence to the Christian church in that they cause the church to become what it has the potential to be merely by their presence. By this I mean, when a person with an intellectual disability is present, their presence changes me in terms of what I am able to do, and what I might now be required to do. If I don't reject them, they will cause me to be a servant, they will cause me to look outside of myself and not be as preoccupied with myself. They will cause me to step back and consider what is really important in life and in human interactions. They will grow my faith in what is sometimes the messiness of their lives that needs help through no fault of their own. They will teach me to love them when they stretch me with atypcial social skills. They need not do anything but be, and they speak through their presence, they challenge through their presence.

I can also exclude their prophetic voice in a variety of ways. I can simply not allow them to be present. I can make deliberate efforts to exclude them. I can claim I didn't know they were out there in the community. I can say they are not a priority.

I can also remove them from the church and create disabled churches. Those who create these settings are very well intentioned.
I do not question their motives.

However, they have an absolutely WRONG notion of the Body of Christ and what it should be. They take what are perhaps the most weak, the most challenging members, and take them away from the larger body. By doing that, they allow the church to continue on on its self absorbed way, not having to change in response to the prophetic presence of people with disabilities. Using 1 Corinthians 12:22 once again, they take the indispensable parts away from the Body, thinking they are doing something helpful. Yes the intellectually disabled adults are happy in their segregation as are the nondisabled adults happy in their lack of integration. But both are WRONG. I cannot take a group of people and decide I don't need them to be with me (check 1 Corinthians again) and those who do these segregated churches are actually doing harm to the larger Body of Christ because they are removing the prophetic presence from the larger church that would cause it to change.

But people celebrate these types of programs because they are uninformed or have never critically thought through the issues involved. Once again, I don't question their motives. However, there are many people who do things that are not good things to do for the best of motives. I will not generate a list here, but segregated churches for people with disabilities is definitely on that bad idea/good motivation list. No doubt.

Who am I talking about? Here is an example. There is a Christian magazine called World. In the recent issue, they list one of these segregated churches as among those being considered for a special award. I don't mean to be unkind but I honestly pray that group will not receive the award, because it sends the exact wrong message about what the church should be doing relative to persons with disabilities. The answer is not to separate them from those without disabilities but to fully integrate them so that their prophetic presence will change us to be what God intends us to be. Both World magazine and this group are actually impeding the prophetic presence, and by impeding their presence, they impede the prophetic will of God.


Tuesday, September 29, 2009

Coffee worship

Often when I go to church, I notice that people take a cup of coffee into the worship service. Now I don't really care whether or not they do that. I was at a church recently, where I bet 10-15% of the congregation were drinking coffee during the "worship" service. Not very many people, but enough that you would notice it.

But, I have often wondered about what worship is perhaps because of how I see it expressed in churches. Singing songs is worship. Singing songs with a cup of coffee in your hands is also worship, I guess, because churches serve coffee to worshippers and don't discourage coffee drinking during the service. So the expectation is that Christians, for whatever reason, cannot do without coffee for an hour in order to be totally focussed on worship to the God they claim to have dedicated their lives to.

You can search this blog and see my questions about worship in terms of what it is or isn't. The thing that disturbs me is not that practitioners like me might be confused, but rather that those in leadership apparently are confused. I guess I could wash people's feed with a latte in my hand or serve the poor, or work with the homeless all while I am sipping my coffee. Imagine standing before a judge or meeting with an important person like the president and walking in with a coffee cup in your hand. That would be considered disrespectful because it in some ways trivializes the interaction. But imagine even more if those in leadership encouraged you to do so. In relationship to worship, that tells me a great deal about who they think God is. God is trivial, not to be taken entirely seriously. "Go ahead and have your coffee while you worship the God of the universe."

This absolutely corresponds to my responsibility to my neighbor, by the way. If worship is trivialized, where I need not respect God, why should I not also trivialize the needs of my neighbor, or ignore them for that matter? This is further evidence of the Christian church's malaise. Muslims pray to Mecca repeatedly in a totally humbling position. Other faiths go through rigorous preparations in order to even enter the presence of their gods.

But hey, for Christians worship is really no big deal. Grab a latte and while you are sipping it, maybe give God a nod because it will make him happy. He likes it when people take a few seconds from their totally self absorbed lives to notice him during the worship service. Are we really so damned dependent on coffee that we can't leave it alone for just one hour a week in order to give God, the respect he deserves? I guess I actually do care...


Thursday, September 17, 2009

Responsibility of disability professionals

In the last year or so, I have done several presentations to teachers groups and human service provider groups. The presentation has been very well received, and will probably become an article someday...

The idea is that when professionals look at the lives of people with disabilities, particularly special education professionals, they tend to look for 3 outcomes that they are attempting to facilitate. The first is a job that either provides a decent wage, or at least allows the worker the opportunity to contribute to the community through some form of useful service. The second is a place to live that is safe and allows access to the things of life that the individual wants to have access to. These two outcomes are what agencies are most typically interested in facilitating. Organizations are characterized as successful or unsuccessful on the basis of their success or lack thereof in these two areas. However, the third outcome that is desired issatisfying social relationships. That those with disabilities have the ability to choose the people they would desire to be with and that they could maintain contact with family and friends. Ultimately that they would develop a personal, social network.

I then tell the audience that if I was to ask you, "What is the most important thing in your life?" and you responded by talking about your job or your house, most of society would think that is pretty sad. You see the most important thing is the people in our lives be they friends, family, coworkers, etc. Relationships are the most important of the 3 outcomes. However, facilitating, helping to develop relationships and to maintain existing relationships are largely not on the radar screen of those who are working in human services. In fact many programs deliberately prevent the development of social relationships in the name of "protecting" those who have disablities.

My wife and I spend time with friends of ours who are adults with intellectual disabilities who live in group homes. The group homes we are involved with happen to be very good ones as those types of settings go. However, I will tell you that the regulations placed upon those who run those homes just about make them into a prison for those who live there. They experience group regulation, and the owners are so afraid of those from licensing, that they fear to allow their residents access to the community because of fines, losing their license, etc. I have shared the following story elsewhere in this blog, however, it bears repeating.

In order for me to have a friendship with the men who live in the home, I have to be fingerprinted. Now trust me, I recognize that this is done only to protect the adults from potential abuse, but just step back and realize that in order for a man living in a group home to have a friendship with someone from the community, someone who is not paid to be with him, that individual has to pay 60-80$. In my case, it was 61$ that was paid in order for me to be able to develop a friendship with 5 men who were living in a home in the community but who were totally socially isolated. When the regulatory folks found out about me, the reviewed the report done by the local police and fined the group home $500 because one of the addresses was wrong (the report was sent to me instead of being sent directly to the group home). I then had to be re-finger printed in order to have access to my friends there. So in the end, it cost a typical person from the community $620 to have a friendship with 5 socially isolated adults with intellectual disabilities. But that isn't the end of it. I will sometimes take a couple of the men to my university, where they are taken out to dinner by students, interviewed, and then finish out the evening with me at Starbucks. Rather than celebrating the fact that a local university professor took an interest in socially isolated people, the group home owner was once again warned about the "inappropriateness" of these individuals going to a university class. In the end, threats were given, and only the member of the home who has the intellectual ability to lie, has been given the opportunity to attend the university with me. When asked by the social workers whether she went out to the university, she responds "No" and they leave her alone. The men when asked, would talk about the people they met, the food they ate, the great cup of coffee they drank and as a result of that, the group home owner was threatened and they can no longer go with me.

Of course all this is frustrating. But the point of this rant is to encourage disability professionals to become involved in the lives of persons with disabilities for at least 2 reasons.

First, if professionals are not involved in these lives who will be? Professionals need to set the example for the larger community with their own personal lives. I tell audiences that I am proud of the fact that my children (now adults) know the names of perhaps 50 adults with intellectual disabilities, because they have been in my home. I don't just expect others to be integrated with people with various disabilities, I try to recruit them into my own life. I do that because they are people worthy of knowing, worthy of friendship. I give them the choice of having a friendship with me, and sadly they always say "Yes". It is sad because I may be their only choice for friendship with a person who is not regulated like them, or is not paid to be with them. In many ways I am a very rare individual in their lives if only for those characteristics.

Second, professionals need to be involved because the more they are the more they will experience the kinds of frustrations that I have experienced over the years. It is the professionals who have the ability to make changes in the way services are provided. They have the ability to advocate for people who often don't even realize that they are experiencing discrimination and are having their rights abridged. The fact that things are the way they are is sufficient evidence for me that professionals have not involved people with disabilitie in their personal lives because if they had, they would be much less satisfied with the services they are providing. I wonder what it will take to wake professionals to their responsibility to those they have devoted their lives to professionally.


Thursday, September 10, 2009

Christian Horizons in Ethiopia

As noted in this blog, Kathi and I along with our son Josh, went to Ethiopia this past summer to work on issues related to disability. Kathi and I did a doctoral seminar at the University of Addis Ababa and then went on to do work in the city of Asela.
However, when we decided to go to Ethiopia, we didn't realize the breadth of the vision of Christian Horizons, and in particular Michael Alemu for this part of the world.

Christian Horizons, a nonprofit out of Canada is doing nothing less then trying to start special education programs in the nation of Ethiopia! They have developed a workable model, have the blessings of the government, and are in the process of trying to train 1000 teachers over the next 5 years. Their model, at present, is to provide an intensive 1 month teacher training program. Kathi and I were involved in providing input into the further development of that curriculum. They will then place the teachers in local school districts, and the government will pay them as regular teachers. They also have a program whereby donations can be made to establish special education classrooms at local schools. Money donated goes to the refurbishing or remodeling of available space, some material and furniture purchase, and the assigning of a teacher. As available, curriculum is also purchased.

The plan is to fine tune a model for special ed delivery, which might be spread throughout the country of over 70 million, and then perhaps move also into southern Sudan and Kenya! It is a very exciting project.

I love the fact that a Christian group goes into a country and assists the government to promote social justice for its own citizens. The group goes in and facilitates a community good, and does it in the name of Christ. Very cool! In training sessions for community leaders, parents, people with disabilities, and even religious leaders from other faiths (particularly Islam) there was openness and a spirit of collaboration with the Christian group. We did our best to put aside our differences and work toward the justice end we were all seeking.

We also had the opportunity to speak with Christian groups as well. Both in churches, and in pastoral training. They (and we) feel that the two objectives go hand in hand. The church needs to offer the spiritual component as well as facilitate greater community integration of those with disabilities. We shared biblical principles about disability which were very well received. It is such a delight to share this information from the Bible. Whether in America or the west, or in places like Ethiopia, people have literally NEVER heard the truths of the Bible regarding disability. They are literally like deer in the headlights, totally amazed at what can be found, but have never heard. It is wonderful to be the purveyor of that new, exciting, encouraging information! It is also disheartening to think that generations of people have never heard the good news of the Bible ABOUT DISABILITY. So sad.

So keep Christian Horizons and its work in Ethiopia/Eastern Africa in your prayers! They are working to increase the access of children with disabilities from the less than 1% currently in the public schools. How exciting to think that a NGO from Canada could step into another country and facilitate such a blow for social justice.


Tuesday, September 08, 2009

"Pulled up by the roots"

From my journal, 7/6 in Ukraine (we were in Lutsk at that time)

I have often quoted the sections from Mark 7. In particular, verses 6,7,8,9 & 13. In a nutshell, "You have let go of the commands of God and are holding onto the traditions of men." As I was sitting here, I asked God if he would give me a new insight, and as he always does, he did.

The same basic story is in Matthew 15:1-20 but with some interesting differences.
v3. "Why do you break the command of God for the sake of your tradition?"
v11. "what goes into a man's mouth does not make him "unclean" but what comes out of his mouth that is what makes him "unclean"
v13 Every plant that my heavenly Father has not planted will be pulled up by the roots...They are blind guides, leave them.
v18 But the things that come out of the mouth come from the heart and these make a man "unclean"
v19 For out of the heart come evil thoughts, murder, adultery, sexual immorality, theft, false testimony, slander. These are what make a man "unclean"

In v11, we learn that what comes out of his mouth...probably also his actions, what he does makes him unclean. Rejection implies a lack of love which might be considered a form of "uncleanness."
V13 is amazing! It implies drastic action and is actually violent. Pulling a plant out by its roots implies removing any trace of it so it can never grow back. Like pulling up the weeds in your garden. You don't just cut off the top, you pull up the whole thing so there is no trace of it and it will never grow back.

Jesus also does this with healing on the Sabbath, and clearing out the money changers. He confronts these wrong traditions head on and unapologetically. This is seen in the disciples' response, "Do you know that the Pharisees were offended when they heard this?" But jesus does not relent. "Leave them they are blind guides." Wow, blind guides. "If a blind man leads a blind man both will fall into a pit" (v14).

And what is "corban," the original focus of this passage? It is an excuse for not doing what I should be doing towards other people (parents in this case).

So lets pull this rambling all together. The Pharisees' traditions had morphed into practices that were contrary to the commands of God. In actually corban was a way to get out of obligations to parents that the children were to follow. But in ways that were perceived as "benefitting" the church, the traditions were developed and passed on. Jesus comes along, and says tradition that contradicts the commands of God are going to be pulled up like weeds at the roots so that there will be no trace of them. He also said that the religious leaders were blind guides, leading others to fall into a pit (along with themselves). When Jesus confronted them they were offended but he didn't care. He actually said that they did a lot of things like that (meaning traditions over the commands of God). Church leaders can say nice things, like God loves us all the same, or we are all equal at the foot of the cross, but the things that come out of me (even if my words are nice) in the form of the actions of the church and its leaders are the things that make them unclean. People with disabilities are not embraced to the degree they should be by the church and its agents. Therefore, by the teaching provided above, they are unclean in the discrimination that is coming out of them.


Tuesday, September 01, 2009

Prevention of intellectual and developmental disabilities

Prevention of intellectual and developmental disabilities is the title of an opinion piece in the August 2009 AAIDD journal. It is written by Dr. Wayne Silverman and takes up prevention using a presentation by Alan Guttmacher, currently the acting director of the National Human Genome Research Institute.
I do not doubt that Dr. Silverman and his colleagues who consulted with him on this article are humanitarians. I also don't doubt they think they are doing what is best for persons with disabilities.

But a comment was made in the article which is just so troubling. Here is the comment
"Current research in genomics, as well as many other areas, is intended to improve understanding of the fundamental causes of disability to reduce risk, thereby lowering incidence of impairments and minimizing their severity. Should these goals be realized, the decrease, perhaps dramatically, and in some distant future significant impairments might even be eliminated altogether. As unachievable as that ultimate goal might appear to be, an assumption supporting many of the programs and much of the research agenda in the field of developmental disabilities is that we, as a society and as individuals, would be better off if physical, mental and cognitive impairments ceased to exist"(p. 320) (Silverman, W. (2009), Prevention of intellectual and developmental disabilities. Intellectual and Developmental Disabilities, 47, 4, 320-322)

I am not sure the world would be better off if the impairments experienced by people ceased to exist. Perhaps, perhaps for individuals it would be better, however, for society as a whole, I am not sure of whether the world would be a better place should I need to have little or no responsibility for others in the community who were dependent on me. If you think our society is self-indulgent now, can you imagine what a self-indulgent society we would have if we weren't faced with the challenges that take our eyes off of ourselves, and place them on our neighbors?

A key phrase for me from the above is also where it says that there might be cures, "in some distant future." Look at the genetic information we currently have. Take down's syndrome for example. Some research indicates that 90% of parents choose to abort children with down's syndrome when prenatal diagnosis information is provided. So, as we await this distant future, people armed with genetic information will not prevent conditions, not prevent disabilities, they will kill people with those conditions and disabilities. It is breathtaking to be so naive as to not see this. It is not a question of prevention of disability. It is a question of killing people with disabilities and calling it "preventing disability."

Later, Silverman does make the comment,
"Furthermore, it must be emphasized that one of the most pressing issues facing our field has been conspicuously avoided in these examples: elective pregnancy termination based on the results of prenatal screening and diagnosis. Consideration of this critically important subject, along with negative biases of many clinicians toward developmental disability (see Bauer, 2008), must be a major part of any dialogue about prevention.(p. 321)
Do we understand, that in the real world today, the overwhelmingly utilized means of "prevention" is "elective pregnancy termination"? Elective pregnancy termination means, abortion, or killing the disabled baby. Can we really enter this discussion "leaving the issue of life and death aside"? That is the issue. We are killing people and calling that prevention. If we can prevent disability without killing people or doing other evil in the process, I am with you. However, the fact that there are decreasing rates of down's syndrome is the result of killing. That is the world I do not want to live in. People with disabilities do not have their disabilities prevented they have their lives taken. Dr. Hans Reinders makes the point in his book, The future of the disabled in liberal society, that if people suffer from down's syndrome, they suffer because of the way they are treated by society, not from the condition itself. So how do we address the negative attitudes of society? We kill the person they have the negative attitudes toward...we foolishly do NOT attempt to change the society.

Later in the article, Dr. Silverman states,
"Even leaving the issue of life and death aside, though, an outspoken segment of our community vehemently opposes prevention. As expressed by the final comment from the audience at Guttmacher's (2008) plenary presentation identifying "the elephant in the room," some among us would "not want to live" in a world without intellectual and developmental disabilities. The commitment of this gentleman and his like-minded colleagues is beyond question, as is their regard for individuals with disabilities. However other people share this commitment yet endorse the concept of prevention (although not necessarily all the strategies for possible implementation). The real elephant in the room, then, seems to be the question of whether a high regard for individuals with developmental disability inherently conflicts with support for prevention of the impairments affecting those very same people." (p. 321)

I was the person he referred to as making the last comment at the conference. You can see my response to the presentation here in a different blog entry.

I was the person mentioned above, but I was misunderstood...
Of course if there was a cure for autism I would be in favor of people with autism and their families having access to it. Of course I celebrate the medical accomplishment related to PKU. If my children had mental illness, of course I would do what I could to prevent THE MENTAL ILLNESS. From a Christian perspective, even though we see the passage where God indicates that He makes people blind or deaf (Exodus: 4:11) we also see Jesus healing a person who was born blind (John 9:3). So healing of disability is great! But you see, that is not what is going to happen.

The cataloging of the human genome will result in people being able to prenatally diagnose more conditions than ever before. So until the "distant future" that is dreamed of, we will increasingly be living in a world where people with disabilities are fewer and fewer because they are being killed as infants or young children. There are those who think that it is wonderful and that we truly are "better off if physical, mental and cognitive impairments ceased to exist." The repercussions of this statement are staggering in their potential for evil because people are equated with impairments so to say we would be better off if the conditions did not exist is tantamount to saying that the people should not exist.
I am confident that this is NOT what the authors are suggesting.
Yes there is a nuanced difference but 99% of the population will not see it.

As I stated, the article was an opinion in the Perspectives section of the journal.

Well, in my opinion, the American Association on Intellectual and Developmental Disabilities is either very naive, or simply doesn't get it.