Juxtaposition

What do you think when you see this object? This object or one very much like it has been in many households in America. Typically you think "infant" as this is a toy for small children that helps them to learn to sort shapes. It is a kind of a cultural icon that people would recognize.
Now imagine that you see a person say 10-12 years old playing with this object. What is your first impression of this person? Do you think that it is cool that this pre-teen is playing with this object or do you immediately assume that there is "something wrong" with this individual because they are playing with this toy? No doubt the answer is the latter. When we juxtapose people with things that typically do not or perhaps even should not be with them, we cause them to bear the associations that go with such a juxtaposition.

This is called using age inappropriate materials with a person. The use of this particular toy will stigmatize a person who is over the age of say 3 who is using it. Let alone, if the person is the only one in a group who is using it.

Now what about this picture which is a page from a Christian coloring book. Imagine that you visited a class that was for adults with intellectual disabilities and they were all sitting around coloring this picture. I deliberately picked this picture because it is a bit more "hip" less juvenile than the pictures in many Christian coloring books.



What would you think about the adults sitting and coloring this picture? I suspect you would think that this is a very unusual adult class as virtually no other adult class sits around coloring pictures. "But the students enjoy coloring!" That really doesn't matter as I know how they will be perceived when they carry around the picture they have colored, they don't. They may be oblivious to the treatment they receive, the stigmatization that goes with being thought of as a child. I know the ramifications, the demeaning, the loss of respect, the way attitudes are affected by simply being treated as if they were a child by those who are supposedly providing them with a Christian education.

Because we understand these things, we must do our best to prevent the negative from happening. Our students may be intellectually disabled, but they are full partners in the blessings of God. I do them no favors when I indicate to people that I think they are children when they are adults.

McNair

"...extension of the processes of control within the capitalist state."

That is how Michael Oliver, the Professor of Disability Studies describes the move from institutions to the community in a 1994 article. He does not see the change as "part of a process of removing some of the apparatus of social control by the state." But an extension of control. I am confident that I don't agree, at least for those individuals with intellectual disabilities that I have known. Perhaps there was more "freedom" within institutions, however, I think chaotic, irresponsible, life without any direction is hardly a desirable alternative to more of a regulated life in the community. His general point, however, I think is well taken. That being that the move from institutions to the community was somwhat of a facade in terms of people truly having their lives changed in terms of approaching more of a typical or normal life. Normal meaning a life like that for the average individual.

However, he doesn't provide an alternative to institutional lives of regulation which is the answer that is really needed. People confined in institutions were "protected" from the community although their protection was not worth the price and was a horror. The shift to community based care was not as Oliver states, a way to save money. If anything it is more expensive if only because of the ratio of care providers to those with disabilities, and the programmatic offerings (good or bad) which are in place.

But his point about extending the processes of control I think I would agree with. Are there capitalist ties, perhaps there are, but I think it is more related to the human condition than it is to our lack of movement toward Marxist ideals as he would desire. I think we see the vestiges of protectionism that occurred at the time of deinstitutionalization which may have provided some level of protection for ex-inmates of institutions, but has now has created new generations of state controlled people, with the venue of control being community based housing/group homes or community based services.

But I wonder about the church. What could the role of the church be, as a free agent not submitting to state regulations in terms of setting up parallel homes or parallel services causing them to be as regulated as any other service. We have tremendous resources within the church, tremendous creativity, but oppressive traditions which do not often allow us to be innovative. We put video screens in the sanctuary and think we are innovative. How about doing something innovative for poor people, or those with disabilities often living in lonliness? One of the beauties of the L'Arche communities as I understand them is the creative model they developed. Yet when they come to America, they struggle to hold on to their identity because of regulations. How might we facilitate community integration that it excludes the governmental regulation, the "processes of control" such that people cease to be commodities that are regulated and be come human beings who just want a regular life?

McNair

Regulated lives, regulated relationships

Well, a light came on for me this morning while I was mucking out the horse's pen. I was blessed with the opportunity to address a group of case workers from the Inland Regional Center on the issue of community integration of persons with disabilities. They were a great group and I had a great time. One point that I make in the presentation is that, particularly for persons with intellectual disabilities, their lives are filled with people who are paid to be with them. That always bothered me because I didn't like the idea that the only way I, as a disabled person, might have an interaction with someone, it seemed, is that if the person was paid. Not only that, those who are paid restrict the unpaid people that I might have access to. They make them do things like get fingerprinted, or other things that change them from friends into regulated (although unpaid) people in my life. The touch of the regulated kills the natural. So I don't like that.

But the light that came on for me, and I recognize it is obvious but a subtle point, is that those who are paid to be with me are regulated. So it is not sufficient that they are paid to be with me, but they also are restricted by their menu of services, how our interactions must be structured, when and where they can be with me, what our interactions will be, and so on and so on. They can be with me when they are acting as a professional human service worker, but cannot be with me when they are acting as a regular person. I can only have a relationship, therefore, with professionals who are experts in understanding me when they are acting as professionals. At least that is what they think. They have been so conditioned by their regulators, that the thought of having personal relationships with people with disabilities, simple friendships, never enters their minds. This is a VERY sad state of affairs. People who have the best chance of understanding me as a person with a disability, people who have the most understanding of my disability and how it will affect social relationships, people have the best ability to advocate for me, people who can demonstrate to others how I can be socialized into regular life through their own invovlement with me, are professionally socialized and regulated into thinking that they cannot have a personal relationship with a disabled person.

As I shared with the group from Regional Center, caring case workers would say, "I am not permitted to interact with people with disabilities outside of work. It is not allowed in my job!" Now that is sad because this agency serves thousands of people with developmental disabilities and the perhaps several hundred caseworkers who have chosen this field as a career feel like they can have no person to person (as opposed to person to professional) relationships with any of them. They are also blinded to the fact, perhaps because of their indoctrination, that there are other people with disabilities in the community who might benefit from a personal interaction with them. On one level, I don't blame them for their oversight. They have been so conditioned in their training and by their handlers in their working life about what their relationship with disabled people should be, they almost cannot imagine personal friendships with these folks.

We have now had perhaps 30 years of efforts at integrating persons with intellectual disabilities into the community. Those who live in group homes are the ones I am particularly thinking of. And in my opinion, our efforts at community integration have failed miserably. There are a lot of reasons for this but let me give you two that I am confident are true. First, professionals in human services, either due to their training, or their personal feelings, feel no personal responsibility for having regular friendships with people with disabilities in their personal lives. As a result, those who would have the greatest likelihood of facilitating integration are not doing it. They are expecting others to do something that they either do not want to do or feel regulated, because of their work, out of doing. If the professionals will not have friendships, why would we expect the average person to have friendships? Second, the church is not the player it should be. This is due to problems on all sides. State agencies, once again because of their regulations I would suspect, feel that they cannot use religious groups, use churches to assist in facilitating integration. The "separation of church and state" is instituted in the lives of persons with disabilities. It is actually foolish to think it might be somehow otherwise. How would regulated people with disabilities, regulated by regulated professionals be expected to do anything approaching natural or normal? For normality to come to the lives of those who are regulated, regulations have to be removed or limited. And then, the church has to step up and be seeking out those who need unregulated, natural friendships. In my own life, I want to be able to stay up too late and be tired the next day if I want to. I want to eat too much if I want to. I want to drink too much coffee if I want to. I want to go places with friends when I want to. I want to be in the community when I want to. I want freedom, in other words. People with disabilities, by virtue of the fact that they have a disability, particularly an intellectual disability, loose their freedom. But the loss of freedom needn't be that way. The more programs are administratively convenient, the more freedom is lost. The more lives are regulated, the more freedom is lost.

What is needed is to step away from regulated lives. More "free agents" need to be in the lives of people with disabilities. People who can go off the reservation in terms of offering the natural relationships and consequences of choices that the average nondisabled person experiences. I am so  tired of people being told what they can or can't do (can't have a coke, can't walk around, can't talk), having their behavior managed as if they were a child, and expecting me as their free agent friend to participate in behavior management by restricting either my interactions or the things I give to the individuals. I am damned tired of people being regulated for no other reason than the convenience of care providers. I am also tired of care providers who want to move toward normalcy being regulated out of offering regular lives, and into the creation of some morphed, prison like, restricted, unnatural life designed for people. In case you don't know, the life created by human service professionals, me included, sucks in comparison to typical, regular lives. I personally do not want people to try to create a life for me that is dependent on boneheaded regulations put together by some politician or beaurocrat. Just leave me alone as much as you possibly can. If you must interact with me, be my professional, but also be sure that I have real friends as that is what I need to have a fulfilling life, perhaps even more than a trained human service professional. And finally, professionals, think outside of the freakin box! If you are not interacting with people with disabilities, befriending them in your personal life, you are failing them and the society who trained you. That society desperately needs you to step up for the betterment of those whose lives have been devalued by the regulations they live under and the very regulated people who serve them.

McNair

"Not playing with a full deck"

When someone is referred to as "Not playing with a full deck" the implication is that they aren't all there, that there is something that is lacking. I find that with some of my friends with disabilities that they are not playing with a full deck. But not in the sense of lacking something like intellect, or physical abilities due to a disability, but they are not playing with a full social deck of cards. Because of their sometimes devalued status, they lack the social capital to get what they want or need. They therefore play the cards that are often buried in most of our social decks. Because of their sometimes hurting condition (socially and otherwise) cards of strength are not played. Rather cards intended to cause guilt, cards that reflect anger, cards that reveal their lonliness or their expectations. It is easy to have those cards played on you and respond, "What did I do to make you angry?" or "It is not my fault that you are lonely" or "I cannot meet your expectations because I work, have a family, have other responsibilities." It is easy to meet these accusing cards with rejection, particularly if you (like me) are pretty much unaffected by those who attempt to foster guilt in you.

I remember when I taught students with serious emotional problems. They would threaten me and swear at me, and try very hard to get me upset. At times they were successful. But I grew to understand that those attacks were their disability speaking. So, just as I wouldn't condemn a person with an intellectual disability who couldn't do math, I can't condemn a person with an emotional disability who can't do social interactions. It is their disability speaking. In the process, if I am able to keep my composure, they learn acceptance and love and I learn patience and how to love people who are difficult to love. I will tell you honestly, however, that I prefer not to learn those lessons. I prefer to be appreciated and told that I am wonderful. Not to be told that I am uncaring and unresponsive. The issue is not whether my disabled friend is telling the truth about me (particularly when I don't think he is), the issue is what will I do with a person who is not playing with a whole social deck and is left to playing cards that will contribute to his exclusion and ostracism; a fact that he is oblivious to.

On occasion, some of these friends will find an encouragement card, or a gratefulness card and I delight when these are played both for the way that they make me feel, and that my disabled friend who played the card was, in that moment, of such a positive mindset that they were able to find that buried card somewhere, pull it out and play it.

The bottom line of this is that loving other people is hard, particularly hurting people. The relationship does not feel like it is 50-50 in effort or kindness or forgiveness. But once again it relates to who I compare myself to. I as a socially competent, successful person with a jovial personality from a Christian home look pretty good when I compare myself with a lonely, dependent person from an abusive home, experiencing the social consequences of disability and living on social security. I come off quite good in such a comparison. But I am playing with a stacked deck compared to many of my friends. I have more aces than the average person, and they may not even have a face card. Once I realize that, the rules of the game change...for me. To whom much is given, much is expected (Luke 12:48). This verse applies to all areas of life including social interactions and I need to pause, and not respond in kind but in kindness.

McNair

Event at Cal Baptist featuring Dr. Wolf Wolfensberger

As a reader of this blog, you will recognize the name Wolfensberger. Dr. Wolfensberger has had a significant impact on the way I see services for persons with various disabilities. He will be coming to Cal Baptist, Feb 27 & 28 to do a training on The history of human services. It will be excellent! See a description of the event below.
McNair

A two-part two-day presentation on the history of human services, tracing the origins of some of our major contemporary service patterns, & some universal lessons which can be learned from this history.
Presented by Dr. Wolf Wolfensberger, and Ms. Susan Thomas of Syracuse University’s Training Institute for Human Service Planning, Leadership and Change Agentry

Dates & Times:
9am-430pm each day
Saturday, February 27 and Sunday, February 28, 2010

Place:
Yeager Center, California Baptist University

Fee:
75$ per person for Day 1 only
125$ per person for both days.
In order to attend Day 2, participants MUST first have attended Day 1.Reductions in the fee are available; contact the registrar.

Description of the presentations:
For each day, the entire morning, and part of the afternoon, are devoted to presentation of content. This is followed by open-ended questions-and-discussion for the remainder of the afternoon.

Using several hundred slides from many (often obscure) sources, this two-part presentation documents the evolution of major human service concepts and practices from ancient, informal, voluntary, unpaid personal helping forms to the largely commercialized patterns that we see today. Especially, illustrations of the architecture of human service settings will be used to show what the service patterns and assumptions were in a given era, and how they changed over time.

The first part of the presentation (Day 1) will sketch important prehistoric and pre-Christian antecedents of current human service patterns, and will show that the history of human services of all types in inextricably intertwined with the history of care for the poor, and of residential services. The evolution of human services into the late Medieval period will be traced, and the impact of the collapse of medieval services preceding and during the Reformation will be explained. The presentation will also explain the negative effects of political and economic changes during the period of absolutism in the 16th-17th centuries.

The second part of the presentation (Day 2) will explain how services became alienated from their valued cultural roots and analogues, and how service recipients of all kinds began to be interpreted as menaces and treated accordingly in brutalizing fashion. At the end of Day 2, universally applicable lessons from this historical review will be drawn, as well as some lessons that are more particular to contemporary services.

The entire presentation will demonstrate how the following current human service ideas evolved: that bigger services are better services; that afflicted people are a menace to society; that segregated services are preferable to integrated ones; and that service recipients should be thankful for what they receive from service workers. The presentation will demonstrate that human service concepts were propagated rather uniformly throughout the westernized world, and leapt across barriers of language, nations, and culture, as early as medieval times. Even then, there was an international human service community which was very well informed of innovations anywhere, so that innovation was often copied elsewhere as quickly as it is today. It will also show how human services are more effective when they are deeply rooted in the historical traditions and values of their culture, and that the drift of services away from cultural-rootedness and toward non-normative and culture-alien approaches contributes so much of the disfunctionality that infects current human service structures and practices.

The presentation as a whole will compellingly demonstrate that human services are full of practices which are now carried on unconsciously, but which are actually vestiges of distortions of practices that were originally instituted with high consciousness.

Even in advanced graduate training, there is very little teaching of this history of human services. This material is relevant to every human service worker, form those on the direct clinical level to those at the highest planning levels, including service professionals and non-professionals, clinicians, advocates, volunteers, administrators, planners, theorists, and analysts. Attendance at the presentation can help anyone gain a better understanding of the service challenges that confront them, some of the dangers that lurk everywhere, and what sorts of service patterns to strive for. Many people who have attended this presentation have remarked that it fundamentally altered their perception of many human service patterns and that it helped them to understand -often for the first time- some of the things they had witnessed, or of which they were a part, or to which they had contributed. Persons who have been through PASS or PASSING training will also find that the presentation can help them greatly to master the very challenging issue of “model coherency” of human services.

Each day there will be a break for lunch and short breaks in mid-morning and mid-afternoon. Because of the highly sequential nature of the material, no one may be admitted to Day 2 of the presentation who has not been to Day 1.

Who should attend:
The presentation is relevant to anyone who is involved in any way in any kind of human service to any societally devalued group in any service field. For instance, for people involved/interested in residential and institutional services, the presentation shows how various specialized institutions grew out of the multi-purpose institution and workhouses for all kinds of afflicted and poor people of the 1600-1700s, which in turn grew out of the small, early Christian hospices.

Of special interest to people who are involved/interested in nursing homes, medicine, and psychiatric services, the presentation will trace several practices and typical architectural styles found in current medical settings from their origins in the practices and structures of early Christian residential services for the sick, pilgrims, and the poor. For example, it will be shown how the nurses’ station evolved from the early Christian service practice of placing an alter in the service setting so that all people there could see and hear the Mass being said. Also, considerable coverage is given to the impact of infections disease, the role of leprosy and the plagues on the design of other kinds of services, and the role of “miasmic theory” of disease propagation. Similarly, the ties of hospitals and other medical settings to concentration and death camps will be documented. For example, the evolution of the tuberculosis sanitarium from the pesthouses of the 1500-1600s will be documented, as well as how different kinds of quarantine-related institutions contributed to the development of concentration camps. It will also be shown how some famous institution architectural designs that are still copied today grew out of the miasmic theory that human afflictions were passed on by winds and “vapors.” The negative features of the separation of medicine from its ties to philosophy and religion, and its conversion into an essentially materialistic science, will also be noted, particularly in regard to the field of psychiatry. Slides will be shown that illustrate the mechanical (and rather brutal) psychiatric treatment devices which sprang up mostly during the 1800s, largely in response to psychiatry’s rejection of the “moral treatment” reform of mental health services.

Of special interest to people involved/interested in prisons and corrections services, the presentation will show how many of the concepts in the prison system and prison architecture of today are actually corruptions and perversions of very noble ideals. For example, it will be shown how prisons lost their culturally normative appearance; that the guard station and gun emplacements in so many prisons are descendents of an earlier custom, in which the altar was the focal point of the setting; and how, over time, prisons came to be located away from population centers and to acquire all sorts of menace imagery.

To register
Contact Dr. Jeff McNair (California Baptist University, 8432 Magnolia Ave., Riverside, CA 92504, phone 951/689-5771, fax 951/343-4553, email:jmcnair@calbaptist.edu. Upon registration, registrants will receive information, including on accommodations.


This event is sponsored by,
The Inland Empire Health Plan (IEHP)
The Disability Studies Institute at California Baptist University
California Baptist University Faculty
Inland Empire Autism Society of America (IEASA)

Like a child

I haven't been blogging as much lately because I have been writing articles for several outlets. I am excited about the articles. Here is a cut from one article that has to do with Jesus and disability. I am sure the final will be much different from this passage, but it was helpful to think through this issue, even though it is still in rough stages. Here goes...

Let's begin this discussion with a story. The first author once interviewed a man with intellectual disabilities in front of one of his classes. When asked if he had a disability, the man responded, “I don’t know, I don’t think so.” The author responded, “Do you know anyone with a disability?”, knowing that the man knew many others with intellectual and physical disabilities. He looked up in thought, paused and thought for a moment. “I can’t think of any,” he replied. That, the authors would argue, is how God sees people. It is not that differences are not seen or even ignored. Is that disability is not the defining characteristic of a person. Persons have value because they are persons, not for the skills or abilities that are brought to the table. In reality, it is those who are most dependent who might be God’s preference. “He chose the lowly things of this world and the despised things – and the things that are not – to nullify the things that are, so that no one may boast before him” (1 Corinthians 1:28 & 29). Also, “it is by grace that you have been saved, through faith – and this not from yourselves, it is the gift of God – not by works, so that no one can boast” (Ephesians 2:8 & 9). There is equality among people, and those who are the most gifted in terms of ability should not be catered to if the Christian or the Christian church is to reflect God’s preferences. If anything, those who are typical or above average are warned, “From everyone who has been given much, much will be demanded; and from the one who has been entrusted with much, much more will be asked” (Luke 12:48).

Jesus also makes several allusions to people becoming like children and welcoming children or those who are like children. One must tread carefully as the point we are trying to make here is not that individuals with intellectual disabilities are children or should be treated like children. There is a danger in juxtaposing people with intellectual disabilities with anything that is child oriented as it feeds into inappropriate and wrong social constructions of who people with disabilities are (Wolfensberger, 2000). But Jesus tells us that we should have childlike faith, that we should humble ourselves like a child (Matthew 18:2-4) and that we should welcome little children (Matthew 18:5). Let’s consider each of these points briefly.

People with intellectual disabilities often do evidence a childlike faith in that they believe what they are told about God by those around them in a very unquestioning manner. Intellect, although a great blessing, may interfere with the childlike faith Jesus is referencing. This is not to say that faith is not based upon intellect, but that the complete trust in God, like a child trusts her parents, is what is desired. There is a questioning that comes with intellect that may interfere with a wholesale giving over of oneself to the person in whom one has faith, be it religious faith or just faith in another person. However, from the authors’ experience, this wholesale faith is able to be developed in persons with intellectual disabilities. It is unwavering and is an example to those who know individuals with such faith.

Then, Jesus celebrates those with the humility of a child. What is childlike humility? It is the basis of the relationship between a parent and a child. The parent is in charge, the child does what he is told to do. The child submits to the parent in all areas of life. This characteristic, once again, is something that is desirable in a follower of Jesus. It may be due to the dependence of people with intellectual disabilities on their families or care providers. Perhaps they recognize their need for support and direction, or perhaps they have simply accepted the fact that they have been relegated to the social status they experience. Either way, they model the humility that Jesus wants people to evidence in a faith relationship with him. Undoubtedly, the fierce independence and individualism of people with typical intelligence, are an impediment to the development of humility leading to faith, which God desires in his followers.

Thirdly, we are to welcome the little child. People with intellectual disabilities can be excellent at welcoming. As indicated in the story above, they may not even see a person’s disability, which is very childlike in the most positive of ways. Young children, in particular, are pure in the manner in which they do not reflect the social constructions of a society that will be taught to them intentionally or otherwise as they grow. These constructions cause people to be characterized in particular ways, specifically as acceptable or unacceptable. Because of a lack of understanding of social nuance, or their not being a part of the “in crowd” they may not be taught the concept of “other” and its impact on relationships. They most likely have experienced being treated as other, but even this notion is misunderstood as people just being unkind for no particular reason. People who treat me poorly because I am a person experiencing a disability, are not seen by me as reacting to my personal characteristics, but rather as just not very nice people.

From the perspective of the welcomer of a little child, some of the same issues that revolve around welcoming children relate to welcoming individuals with disabilities. We are not excused from welcoming should a person have social skill deficits, or not understand particular ideas, or need direction, or need support, or make demands on someone’s time and so forth. Rather, as with meeting the needs described in Matthew 25 “whoever welcomes a little child like this in my name welcomes me” (Matthew 18:5). Welcoming someone with childlike characteristics is welcoming Jesus.

More to go on this but that is where it currently stands.
McNair

CBU online MA in Disability Studies to launch in January 2010

The following is the announcement put out by California Baptist University.
You can also contact me via email should you have any questions. Not to late to join the very first cohort, but must act quickly.
McNair


ANNOUNCING CBU's Master of Arts in Disability Studies Online Program

**********************************************************************
Great news! The Master of Arts in Disability Studies Program at CBU is ready to begin online January 2010. If you would like to start the New Year by enrolling in this exciting program, it's not too late! Get your paperwork in by the first week of January. Classes begin the second week of January.

For information please contact:

Debbie Passalacqua
Assistant Director
CBU Graduate Admissions
8432 Magnolia Ave • Riverside • CA 92504
Phone: 951.343.4527 Toll Free: 877.228.8877

The death of evil

I was listening to Dennis Prager on the radio the other day. He is always very insightful. He made a comment something to the effect that society typically only recognizes evil when it is done...only recognizes evil when it is dead evil not when it is live evil. For example when we look back on things like slavery in America, or racial prejudice we see it for the evil that it is and was. Yet at the time it is as if many were blinded to the evil, perhaps denying that it even existed. Once again thinking about racial predjudice, one cannot imagine that dominant groups were unaware. Yet they may have been. I often have to caution my students when looking at issues of disability, that we look through 2009 eyes at problems that were not understood as problems in the 1960's. Or, if they were understood, it was only by a few. That doesn't mean that the problems were not problems or were not evil. But simply that we have had the benefit of years of societal evolution and analysis relative the events of the past such that they appear crystal clear to us.

I have the feeling that the church is beginning to wake up to the evil of exclusion of persons with disabilities. This is a very promising change, as if what Prager says is true, then perhaps we are beginning to see the death of that evil. I feel, sometimes, as if I am looking at the 1960s through 2009 eyes. I have stated elsewhere in this blog that I don't know why God has allowed me to see the injustice when so many are not even aware of it. I see the shock in my student's eyes when I ask them about their church experience, when they report on interviews with their pastors and when they are exposed to the information provided in class. It is literally as if dark glasses were taken off of their eyes. "I had no idea" is a common refrain. The good news is that they now have the equivalent of 2009 eyes looking at 1960 and Lord willing, this will cause them to make an impact for social justice in their own church settings.

If the Lord allows, I hope to be in a room someday, where, after years of inclusive attitudes by the church toward persons with disabilities, someone will say, "Remember then they used to exclude these people? I can't believe that people would have actually done that. What were they thinking?" I have had that experience relative to young people and issues of race. I hope to have the same experience relative to issues of disability, particularly in a church setting.

McNair

The 40 year old virgin

Not too long ago, there was a movie out called The 40 year old virgin. I didn't see it, but I am confident I know the premise. How can a person be 40 years old and still be a virgin? For a Christian, the answer is easy although living up to the requirements is not as easy. For a Christian, a 40 year old virgin is someone who is not married and is doing their best to be obedient to God's commands. Society treats such persons as fools. I would honor such a person as a saint! You see if you are not married and you are not a 40 year old virgin, you are either living under God's forgiveness for your failings, or you are needing God's forgiveness for your failings. In the overwhelming majority of areas of my life, I am the former. I am living under God's forgiveness for my failings. But I want to take this discussion in a different direction. That is, if you are a person who is doing what is right, what you should be doing, you will not always be celebrated by society, you may actually be ridiculed, called a fool, or disdained. As a Christian, one of the best things you can do is learn to pay no attention to those in the world who would criticize you for doing the right thing, like being a 40 year old virgin if you are unmarried.

I have visited many special education classrooms for students with severe disabilities. Some teachers stand out from others as really getting it. In one of those settings, I supervised a teacher who was excellent at data collection on educational programs for her students. That is important because students who often make slow progress need teachers who are accountable to ensure that they are making progress. So this teacher who was one of the best in this area that I have seen, has become embarrassed about the fact she takes data. Why? Because those around her tease her about her efforts to be accountable. As a result, she at times does not share the hard work, good work, that she has been doing.

In my classes for teachers who teach students with severe disabilities, I often tell them that there will be great pressure on them to be mediocre. Believe it or not, it often comes from the districts and from other teachers. People are often threatened by excellence because it shows them it can be done, and may make those over them expect excellence of them as well. So what do they do? They tease and criticize those who are doing well in order to protect the marginal way they are doing things, are doing their work. Rather than seeing themselves as a part of a team, they see themselves not wanting to raise their standards.

Albert Pujols is arguably one of the best baseball players ever. But imagine if his teammates teased and criticized him about how many home runs, or RBIs or MVP trophies he received. Rather than criticize, they should celebrate him. He not only makes them look good as a part of their team, he raises the standard for them to aim at, and shows them what excellence can actually look like.

That is what good teachers need to do. I talk to those in the administration above my teachers, and I know the kinds of things THEY say about excellent teachers. They are extremely grateful to have teachers who are doing it right, whose standard is not the positive regard of their peers who do not reflect the best practices. So if you are doing your best to serve your students, to serve God through your work, ignore your detractors who fear that you make them look bad.

McNair

Faith Structures

I am in the process of finishing up an article about faith formation in individuals with disabilities. For those who are not affected intellectually by their disability, perhaps most of the questions one might have about faith development are pretty much the same. There might be additional questions about God's sovereignity, about what might be expected of the Body of Christ in terms of support and understanding, and generally the social consequences of disability. These aspects of life need faith answers in addition to just life answers. When one is the recipient of negative social attitudes one wonders where God is in all of it. Even in the best of social situations, one wonders about the difficulties one faces on a daily basis, and leans heavily on God for support.

I have heard Joni Eareckson-Tada say something to the effect that when she wakes up some mornings, she prays hard that God would give her a smile to give to her care provider to start her day. That beautiful smile does not always come naturally and I think Joni would agree that at times it is the result of supernatural intervention.

So there are aspects of faith development that are unique to persons with disabilities that are not related to their intellect.

At the same time, as I have been thinking about faith development as it relates to people with intellectual disabilities, particularly severe disabilities, I have wondered about what the research literature sometimes refers to as the structures of faith. Faith development research often uses these structures to measure faith development. Lets put aside, for a moment, that these structures are somewhat generic which in and of itself may be problematic as they may imply that the content of faith is somehow less important in faith development than the structures are. Obviously for the Christian, nothing could be further from the truth. But what if you were really unable to comprehend the content of your faith or your faith group. How might one develop "faith" in these people?

As I have thought through this, I think that I have come to the position that I will work to develop faith structures as the focus of faith development for these individuals. What are these structures? Things like loving other people, participating in traditions, being a member/a part of a larger group, and receiving love and acceptance from people within the group. These things which are related to faith might provide the best evidence of whether one is growing. I will admit that one might grow in these areas independent of the content of one's faith. I will also admit that I trust God in the lives of persons with severe disabilities, and I try to understand the lesson of Luke 5:20's statement about Jesus seeing "their" faith and the impact of the faith of those around the disabled man on his own life. Perhaps in some way, the faith of the body impacts the development of the faith of the intellectually disabled person although it might only be measurable in faith structures.

McNair

Amos Yong on theology and disability

Dr. Amos Yong of Regent university, was recently honored by being appointed to the J. Rodman Williams chair. In the speech he provided upon receiving the honor, he spoke about issues of church and disability. He spoke about the centrality of people with disabilities to the church. I found his presentation really remarkable, and would encourage anyone who follows this weblog to view his remarks. Go here, and the video will load.

http://www.regent.edu/admin/media/fms/butterfly/butterflyURL.cfm?address=3000148

If you are interested in remarks regarding the chair itself and the man who is its namesake, you can just let the video run.

But if you are interested in Dr. Yong's remarks, move the cursor on the control bar that indicates the loading/movement through the presentation to the first red line on the right of the bar. That is where his presentation begins.

The presentation is excellent. As I wrote to him, I suspect many theologians have never thought the ideas he shared, let alone spoke them.

McNair

Corporate Faith

In relation to persons experiencing various disabilities, discussion must be made of aspects of corporate faith versus individual faith. 1 Corinthians 13 tells us that one can speak in tongues of men, be a prophet, move mountains, give everything to the poor, even sacrifice one’s own life, but without love you gain nothing. For those with disabilities who look at the Christian church, and for those within the church who have the awareness to self evaluate, one must ask what we have to offer those with disabilities in terms of faith development because we have lacked love, toward them. We focus on all these things which are described as less important in comparison to love and think we have the ability to grow their faith. We show favoritism to particular people in the face of warnings against such favoritism (James 2:1-13) and then expect to grow their faith.

For many, perhaps most churches, corporate faith development has to precede individual faith development of individuals with disabilities because as a friend with severe physical disabilities once commented to me, “Why would I go to them for help when they have already indicated they have no interest in me?” The church’s corporate faith is in many ways a prerequisite to developing the individual faith of members with disabilities. Many who have endeavored to include persons with various disabilities in local churches for the very purpose of increasing their faith are often frustrated by the lack of faith, the lack of understanding of who God is, their lack of trust in God and dependence upon themselves and their ignorance and actual disdain for God’s desires for all people evidenced in the leadership of churches. What is revealed about what faith is when faith leaders are comfortable with the exclusion of persons with disabilities? Would one go for piano lessons from someone who cannot play the piano or plays poorly with no interest in improving and doesn’t even particularly like the piano? For faith development to occur at local churches there needs to be a change in the understanding of what faith requires in local churches. Why would I possibly want to learn the faith of a group who would exclude me? To tweak the famous Groucho Marx line a bit, “I would not join any group that would not want me as a member.” People with disabilities will not be drawn to a Christian church that does not want them as a member. People with disabilities will not be drawn to a Christian faith that is comfortable with their exclusion. Why would people with disabilities want to learn and grow in the Christian faith if it does not see them as a priority? It doesn’t take Bible knowledge to understand that such a stance is evidence of a lack of faith, whatever the faith of the group is. For the Christian faith, such exclusion indicates that at worst, the faith is not at all Christian, and at best sinful behavior.

McNair

"Favoritism Forbidden"

The NIV version of the Bible that I have, provides the heading to chapter 2 of James with the phrase, "Favoritism Forbidden." The passage then goes on to the say the following.

My brothers, as believers in our glorious Lord Jesus Christ, don't show favoritism. Suppose a man comes into your meeting wearing a gold ring and fine clothes, and a poor man in shabby clothes also comes in. If you show special attention to the man wearing fine chothes and say, "Here's a good seat for you," but say to the poor man, "You stand there" or Sit on the floor by my feet, " have you not discriminated among yourselves and become judges with evil thoughts? Listen my dear brothers: Has not God chosen thowe who are poor in the eyes of the world to be rich in faith and to inherit the kingdom he promised those who love him?"

Later it says,

If you really keep the royal law found in Scripture, "Love your neighbor as yourself" you are doing right. But if you show favoritism, you sin and are convicted by the law as lawbreakers. For whoever keeps the whole law and yet stumbles at just one point is guilty of breaking all of it."

A friend and leader in disability ministry who has a son with severe disabilities told me a story the other day. A couple of weeks back, he dropped of his son who does not have a disability at the Sunday school of a church he was considering attending. He asked one of the helpers about whether there was a program for his other son who had severe disabilities. At that moment, the pastor walked by. The Sunday school worker stopped him and asked about whether there was a spot for the son with severe disabilities in the children's program. He responded, "We are not equipped to serve children with autism."

Have you not discriminated among yourselves and become judges with evil thoughts?

I wish this were less common than it is. I think that just as faith without works is dead (the next chapter of this section of scripture) I would argue that love with exclusion is dead. This child with severe disabilities is being excluded through no fault of his own. He has done nothing that should cause him to be excluded. But because of who he is, arguably because of the way that God has created him, he is deemed by the church to be excludable. This is disobedience. And as the second quote states, "For whoever keeps the whole law and yet stumbles at just one point is guilty of breaking all of it." Is it not obvious that this church is therefore, this PASTOR is therefore guilty of breaking the law. Yet this behavior is still considered acceptable.

It never ceases to amaze me that people will say things that are so evident of disobedience. I might think disobedient thoughts, but to share them with a parent who has experienced the challenges of raising a child with disability such a dismissive statement based clearly on favoritism is somewhat breath taking.

McNair

MA in Disability Studies at CBU

California Baptist University to launch its new MA degree in Disability Studies in January of 2010. The degree is entirely online. We are accepting applications for the first cohort now through the end of November. Applications need to be completed by December 1. Spring classes will be taught by Dr. Jeff McNair, and Prof. Kathi McNair. For more information, check out the website, http://calbaptist.edu/disabilitystudies or you can contact Dr. McNair directly at jmcnair@calbaptist.edu or by phone at 951-343-4489.

This program received WASC accreditation Summer of 2008 and has received significant input and support from the Joni and Friends organization whom we consider our partners.

So please contact Dr. McNair with questions or to request an application or you can visit the website above for more information.

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.

McNair

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 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...

McNair

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.

McNair

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.

McNair

"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.

McNair

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.

McNair