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

Tuesday, December 21, 2004

U.S. Catholic Bishops part 8

The following is from the "Doctrine and Pastoral Practices" website sponsored by the United States Conference on Catholic Bishops. http://www.nccbuscc.org/doctrine/disabilities.htm

"8. We welcome qualified individuals with disabilities to ordination, to consecrated life, and to full-time, professional service in the Church."

Although the primary focus of this blog has been integration of persons with disability, particularly cognitive disability, into the church we have at times touched on other areas of disability. Although I do not understand all aspects of "consecrated life" as mentioned by the Bishops, I suspect there could be vocations which might be filled by persons with some form of cognitive disability. Particularly those which might not require a great deal of study or theological understanding. Those which would not require the supervision of those without cognitive disability or some of the more demanding aspects of teaching. However, I want to move away from cognitive disability for a moment.

There is no doubt that persons with various forms of disability (physical disability, blindness, deafness, etc.) have been ordained and served in full-time professional service to the church. If they did not have these disabilities when they began service, they certainly have developed them over time. As we are using a Catholic document as a point of departure for this discussion, one need only consider the Pope who with advanced age has found himself increasingly facing apparent physical disabilities. Although these disabilities have impacted his ministry, they have in no way limited the impact of his ministry. I suspect there are many who upon seeing his disability are actually encouraged by the fact that he can relate to the physical issues they are facing in their lives.

There are also those who have been disabled by others in the service of God. The Bible speaks of horrific tortures people have faced over time because they refused to either denounce a belief in God, or refused to stop telling others about God. I cannot imagine we would now disqualify those who endured such trials from working in ministry.

I have known a variety of people who have served as ministers who also experienced disability. One of the most powerful sermons I ever saw was delivered by Rev. Steve Chance. He is an ordained minister who also has cerebral palsy. I remember Steve would sit in the front row of the church waiting to be introduced. Upon his introduction, he would slowly go up the steps leading to the stage so that he could deliver his message. You struggled with him as he made his way up the steps. Just the act of him climbing those steps drew you in, gave you some small bit of empathy toward the challenge moving around the community might be for him. As he would reach the platform and move toward the lectern, you were relieved. Steve, somewhat haltingly, would then turn and rivet the audience with a brief pause. "Is God fair?" he began, and you knew that he had a good notion of whether on not God was based upon his personal experience. Contrast that presentation with the good looking well built pastor who bounds up on stage and asks the same question. Steve had and has a vital ministry because of the experiences God has placed in his life. Experiences you and I and probably Steve would chose not to have, but the end result is a powerful witness for God in a way that others could not emulate.

I was in a meeting the other day where several deaf leaders in their church spoke about the incredible benefit of having a pastor/priest who was able to sign. It was not shared whether or not the person they spoke of was deaf himself. If he was, what a great investment on the part of the church to train up and place him among others who spoke the same language and had similar experiences (I am reminded of God coming to the Earth in the form of man). But even if he wasn't deaf, what an obvious thing to do to minister to a community. Can you imagine going to a church where you not only don't speak the language they speak, you can hardly even perceive it.

Involvement of persons with disability in church leadership is not a mandatory thing that must be done, but it does send a message to the congregation about what the church thinks about persons having that characteristic. If I see persons with my same racial flavor in leadership, it implies to me that people like me are valued. If I never see anyone who looks like me in leadership it implies that people like me cannot rise to leadership at worst, or at best that the church is too lazy to find someone like me.

I remember that at the university where I used to teach, a new building was built with a large lecture hall. The stage of the lecture hall had no wheelchair access to it. I can imagine the discussion between those who planned that stage . . . "Do you think we need to have wheelchair access to the stage?" "Naw, nobody in a wheelchair would be speaking to this group. Besides, if the university thinks its important, they can add a lift or something later." The ultimately did.

If the church wants to engage the community, to bring the community in, to minister to the community, then the congregation must reflect the community AND the leadership must reflect the community as well. If I don't see myself there, then I won't come.


Thursday, December 16, 2004

U.S. Catholic Bishops part 7

The following statement is from the "Doctrine and Pastoral Practices" website sponsored by the United States Conference of Catholic Bishops. This is available at http://www.ncbuscc.org/doctrine/disabilities.htm

"7. We must recognize and appreciate the contribution persons with disabilities can make to the Church's spiritual life, and encourage them to do the Lord's work in the world according to their God-given talents and capacity."

You know, I honestly don't think we do recognize and appreciate the potential contribution persons with disabilities can make. We have an idea of what it might be like if persons with disability were integrated into the church, but really, we don't know.

I remember back in 1985 when I bought my first computer, a Mac (it was amazing). Although I had a notion of what I might be able to use a computer for, part of me felt like I was buying a Cadillac to go the grocery store when I already had a perfectly good electric typewriter. Now, I can hardly imagine life or work without a computer.

Perhaps if persons with disability were truly integrated into the church we would begin to recognize the contributions they have always been available and able to make but never had the opportunity to make because they were not fully included.

The Bishops also chide us that we must "encourage them to do the Lord's work." As I have stated elsewhere in this blog, a friend of mine named Jack is an adult with developmental disabilities who lives at a healthcare center for seniors. Jack lives there because of a medical problem he has, however, he is far and away the youngest man at that place. Many of the other residents are in advanced stages of senility, alzheimers, whatever you might want to call their gradual mental regression. But Jack knows all their names, says hello as he walks through the facility, talks about the Lakers (his favorite subject), reads the newspaper with them among many other things I am sure I am just not aware of. Jack is a minister of friendship and encouragement to the people living in that place. He also facilitates prayer for people in that place, staff and residents at times, through mentioning their names at times when we pray at church.

In my mind there is also something special about the prayer of a person with cognitive disability. Now don't get me wrong. The specialness has nothing to do with some idea that they have a special soul, or any other theological goofiness. The Bible says that the prayer of a righteous person avails much. Other notions of prayer are linked to faith. I find that persons with cognitive disability often have great deal of faith (as Jesus recommends, the faith of a little child). I really don't think God looks on us and says, "Your faith isn't as good as someone else's faith because you are cognitively impaired. Or your faith is greater because you are a professor at CBU." It is more about what we do with what we have. If I am to have the faith of a little child, then there might be something that I need to loose in order to gain that innocence. I need to loose my overly analytical mind, my need for proof. We are saved by faith. I see some of my cogntively disabled friends much ahead of me in terms of basic faith in God. I also find they are righteous. No they are not perfect. But their unrighteousness is often different from my unrighteousness.

People with unquestioning faith are definitely in need in the church. I could give many examples of such faith in persons with cognitive disability. Times where they encouraged children and adults with their "take Him at his word" approach to God.

So although I appreciate the Bishops' statement, and agree with it, I really don't think we know of what we speak, as the saying goes. Are there blessings to be had if the church is more open to and inclusive of persons with disability? What would we see if the congregation represented the community?

Lets find out...


Tuesday, December 14, 2004

U.S. Catholic Bishops part 6

The following statement is from the "Doctrine and Pastoral Practices" website sponsored by the United States Conference of Catholic Bishops. This is available at http://www.ncbuscc.org/doctrine/disabilities.htm

"5. Since the parish is the door to participation in the Christian experience, it is the responsibility of both pastors and laity to assure that those doors are always open. Costs must never be the controlling consideration limiting the welcome offered to those among us with disabilities, since provision of access to religious functions is a pastoral duty."

The parish (aka the local church) is indeed the door to participation in Christian experience. It also is the responsibility of both the pastors and the laity to keep the doors open. I have been in situations where the pastors kept the doors open to persons with disability in spite of the laity and the laity kept the doors open in spite of the pastors. The latter seems more difficult to me. But a larger question is what is meant by keeping the doors open.

In one of the Cal Baptist courses I teach, students are required to interview their pastors about ministry to persons with disability. Perhaps the most common answer they receive is that the church is 1) wheelchair accessible and 2) has handicapped parking spots. Somehow, these legal requirements for public buildings have been confused with the Bishops' notion of the churches' doors being "open." Obviously, openness must mean something more than simply physical access. The fact that I can go somewhere doesn't mean that I am welcomed there. There is a qualitative difference that distinguishes open in terms of access from open in terms of wanting or desiring someone's presence. The latter form of openness implies that those who are open have done something to be more than just physically accessible.

The Bishops imply openness is participation in the Christian experience. For some that implies a facilitation of participation as participation will not occur on its own. Its like the catalyst in a chemical experiment.
catalyst - A substance usually present in small amounts relative to the
reactants, that modifies, especially increases, the rate of a chemical reaction
without being consumed in the process. (American Heritage Dictionary)

Interesting definition.
Small amounts, yes.
Especially increases the rate of reaction, yes.
Without being consumed in the process, yes.

Costs are at times given as the reason for a lack of programs for persons with disability. The point I find interesting about this excuse, is that we accept it. Perhaps it has just been used for so long, that we assume it is a justifiable response. But I would say, that the next time someone tells you they cannot afford something relative to serving persons with disability, ask them to share with you what the specific costs are, and how they came to determine those costs. I am quite confident they do not know of what they speak.

". . . since provision of access to religious functions is a pastoral duty."
I do not claim to be a Bible expert, however, I cannot remember a time in the New Testament when people were excused from ministry on the basis of finances. It is almost as if finances are somewhat irrelevant. Please do not get me wrong, I understand that things cost money, however, there is much that can be done without money. A major focus of the Bible is both ministry to the poor, and the responsibility of the poor in ministry. God would not call us to only expensive forms of ministry as not all would be able to participate then. It is just as God would not make walking, or vision, or hearing, or cognition a prerequisite to ministry. We are all called to serve independent of our abilities. To whom much is given, much is expected, however, there are very few to whom nothing is given and nothing is expected. We cannot use the excuse of no money for nonparticipation in ministry. That is the cool thing about God's call. Pretty much all of us have what is required for some level of service, we have the ability to be servants independent of our salaries.

The Catholic Bishops are all about access, facilitating access, and removing barriers. This statement (statement 6 above) would not be relevant if the Bishops had not seen a lack of access or the placement of barriers somewhere.


Friday, December 10, 2004

Christmas message from the Archbishop of Canterbury

A friend, Bill Gaventa passed this on to myself and others. He states, it is "important for the way a major church leader has utilized a metaphor from the world of disability to shape a message... a positive vision about the importance of inclusion and embrace, via the Archbishop of Canterbury." I agree with Bill about the message's importance and so I thought I would pass it on here as well.

Christmas message from the Archbishop of Canterbury
to the Anglican Communion

"A few weeks ago, I took part in a discussion that involved a number of people working with children and young people who suffer from different forms of 'autism' - the kind of disorder that seems to cut people off from ordinary communication and shows itself in strange repetitive behaviours and sometimes in violent outbursts. We watched a video showing the work of one of the most experienced therapists in Britain, and then heard her talking about what she is trying to do with her methods.

The first thing we saw on the video was a young man, severely disturbed, beating his head against a wall, and then walking fast up and down the room, twisting and flicking a piece of string. The therapist's first response was strange: she began to twist and flick a piece of string as well. When the young man made a noise, so did she; when he began to do something different, like banging his hand on a table, she did the same.

The video showed what happened over two days. By the end of the two days, the boy had begun to smile at her and to respond when touched. A relation had been created. And what the therapist said about it was this. Autism arises when the brain senses too much material coming in, too much information. There is a feeling of panic; the mind has to regain control. And the best way of doing this is to close up on yourself and repeat actions that are familiar; do nothing new, and don't acknowledge anything coming from outside. But when the therapist gently echoes the actions and rhythms, the anxious and wounded mind of the autistic person sees that there is after all a link with the outside world that isn't threatening. Here is someone doing what I do; the world isn't just an unfamiliar place of terror and uncertainty. And when I do this, I can draw out an answer, an echo; I'm not powerless. And so relationship begins.

To see this sort of thing in action is intensely moving. This is real mental and spiritual healing at work. But it gives us a powerful imageof what it is we remember at Christmas.

Human beings are wrapped up in themselves. Because of that great primitive betrayal that we call the Fall of humanity, we are all afraid of God and the world and our real selves in some degree. We can't cope with the light. As John's gospel says, those who don't want to respond to God fear and run away from the light. But God acts to heal us, to bring us out of our isolation - which is as bizarre and self-destructive as that young man beating his head against the wall. And he does this in a way that is just like the therapist in the video. He does what we do; he is born, he grows up, he lives for many years a life that is ordinary and prosaic like ours - he works, he eats, he sleeps. Here is ultimate love, complete holiness, made real in a back street in a small town. And when he begins to do new and shocking things, to proclaim the Kingdom, to heal, to forgive, to die and rise again - well, we shouldn't panic and run away because we have learned that we can trust him. We know he speaks our language, he has responded to our actions and our words, he has echoed to us what we are like.

Christ does not save the world just by his death on the cross; we respond to that death because we know that here is love in human flesh, here is the creator's power and life in a shape like ours. As we read the gospels, we should think of God watching us moment by moment, mirroring back to us our human actions - our fears and our joys and our struggles - until he can at last reach out in the great gestures of the healing ministry and the cross. And at last we let ourselves be touched and changed.

That's what begins at Christmas. Not a doctor coming in with a needle or a surgeon with a knife, but a baby who has to learn how to be human by watching; only this baby is the eternal Word of God, who is watching and learning so that when he speaks God's transforming word we will be able to hear it in our own human language. He is God so that he has the freedom to heal, to be our 'therapist'. He is human so that he speaks in terms we can understand, in the suffering and delight of a humanity that he shares completely with us. And now we must let him touch us and tell us that there is a world outside our minds - our pride and fear and guilt. It is called the Kingdom of God.

May the blessing of Christ our incarnate King be with you all at this season."

Rowan Cantuar

(c) 2004 Rowan Williams

Tuesday, December 07, 2004

U.S. Catholic Bishops part 5

The following is from the "Doctrine and Pastoral Practices" website sponsored by the United States Conference of Catholic Bishops. This is available at http://www.ncbuscc.org/doctrine/disabilities.htm

"5. Parish liturgical celebrations and catechetical programs should be accessbile to persons with disabilities and open to their full, active and conscious participation, according to their capacity."

Accessiblity and participation.

Accessibility is much more than wheelchair access or handicapped parking spots. Today, virtually any new, public, building will have many accessibility aspects nailed down because it is the law. However, accessibility is much more than that. If I have chairs in my auditorium, does that mean I am willing to accept any person who sits in those chairs? Hardly.

Accessibility should imply a certain desire to have people involved, it implies that I have done a bit more of something, something out of the ordinary perhaps, to facilitate access. So in my church, for example, we not only say we invite children with autism to be involved in the children's classes, we have people who are available to serve as "buddies" to help the child feel a part of the group. It is a small thing, but it allows one to say, "Not only are you and your child welcome here, but we have buddies to help your child to be successful in the children's program here." It implies we have thought about people like you, with your life situation before. It implies that we value you, so, we have come up with a way to make access to our church easier for you.

The Bishops' statement says access to "liturgical celebrations" and "catechetical programs." Although not a Catholic myself, I recognize the importance of liturgy to the Catholic tradition. If one is to be a full fledged Catholic, she must have access to liturgical celebrations, which include much of the public meetings of the faithful. The catechetical programs are the educational programs leading to catechism as well as other benchmarks of church membership/participation (I would assume). Persons with disability should have access to these educational programs so that they can participate fully, "according to their capacity."

On the basis of experience with persons with cognitive disabilities in church situations, it would be easy to dismiss someone as not having the capacity to benefit from a variety of programs the church has to offer, if you don't provide time and opportunity for those individuials to participate in the programs. Yet, there are people who are prayed for on a weekly basis, simply because friends of mine who are adults with mental retardation ask our group to pray for them during a time of prayer requests. I have prayed for the bus driver of several men who make the request each week, for years. If you honestly believe in the power of prayer, you must believe that the desires on the part of those men to have their bus driver prayed for has somehow made a difference. They also always ask me to pray for their teacher. Another man who lives in a senior center (arguably not the most appropriate placement for that man, although I think he has a ministry there as he brightens the lives of many of the residents through his knowledge of sports and unabashed ability to start a conversation with anyone) asks me to pray for his mother and a nurse who helps him each week. I can't help but wonder how many of the other residents are not prayed for each week. One staff member always asks him to pray for her as well and we make a point to remember to pray for that person. I guarantee to you that were those men not involved in the program at our church, for sure the people for whom they ask for prayer might not be the topic of prayer, at least not by me and others in the group. Will these men remember that Paul and Barnabus split up and Paul went with Silas and Barnabus with Mark (our current lessons are from Acts)? Does it even matter? They are participating to the extent to which they are capable and they are making a difference in their own lives as well as the lives of those for whom they are praying or facilitating prayer through their request for prayer.

The Bishops touch on a notion which I suspect has a great deal behind it, that of "conscious participation." I suspect this term implies a notion of understanding. My son recently took a class in Philosophy as a part of his college curriculum. At the end of the class, students could ask the professor any question they wanted. He asked, "Do you believe in God?" He replied "No," but followed up the statement with the analogy of him being like a flea on a dog, trying to understand what a dog was (as an aside, that is why God-the dog, became a flea-in the form of Jesus, so we would get some understanding of who He is). Anyway, we understand a lot less than we think we do. We compare ourselves to others who know less than we and congratulate ourselves, or segregate ourselves on the basis of our knowledge. As I have stated elsewhere in this blog, however, such comparisons are silly. They are particularly silly when we think about what we know about God in relation to what might be known about him, and then we segregate our selves on the basis of what we supposedly know.
"He chose the lowly things of this world and the despised things - and the
things that are not - to nulify the things that are, so that no one may boast
before him. It is because of him that you are in Christ Jesus, who has become
for us wisdom from God - that is our righteousness, holiness and redemption. (1
Corinthians 1: 26-29)"

You know, sometimes the above sounds like a warning to me. It makes me wonder about the things that I choose in comparison to the things God chooses. My choices are evidenced by to whom I give access and for whom I facilitate participation.


Wednesday, December 01, 2004

U.S. Catholic Bishops part 4

The following is from the "Doctrine and Pastoral Practices" website sponsored by the United States Conference of Catholic Bishops. This is available at http://www.ncbuscc.org/doctrine/disabilities.htm"

"4. Defense of the right to life implies the defense of all other rights which enable the individual with the disability to achieve the fullest measure of personal development of which he or she is capable. These include the right to equal opportunity in education, in employment, in housing, and in health care, as well as the right to free access to public accommodations, facilities and services."

Once the right to life is secured (and it is arguable that it has not yet been secured, as evidenced by the Bishops' third statement) our hope would be to expand rights to include those which facilitate the fullest measure of personal development. This is one of the reasons this blog spends so much time on opening the church to persons with disabilty as churches do indeed facilitate a fuller measure of personal development, and not just in the spiritual arena. The notion of personal development of persons with disabilities is not one that the church necessarily knows how to do. The comment was once made to me that disabled persons don't improve, so why devote so much time to them? The fact of the matter is that even the most severe of disabled persons do evidence improvement (I haven't done the research yet, but anecdotally I have observed this) although perhaps not to the degree of those without disability. However, as with all church members, it should interest the church whether its members are achieving the fullest development possible, as least as much as they are able to impact development.

Then there should be equal opportunity in
  • education
  • employment
  • housing
  • health care

Education is improving, although equal opportunity doesn't necessarily mean access to the core curriculum being used for students without disability. It should mean access to the type of curriculum which would best serve each student (would facilitate personal growth as above). However, sadly many disability advocates have fought for access to the core curriculum, which is a curriculum built upon a social efficiency model (having the greatest impact for the greatest number of people) not a critical/functional skills model. So students have gained the right to a curriculum which is not necessarily even relevant for them. People have confused access to the core curriculum with integration and so even though children are being educated next to each other, it is arguable as to whether they are receiving the instruction each individually (both those with and without disability) needs to be the most successful.

Employment access has improved somewhat through both the requirements of the Americans with Disability Act, and the increasing recognition among employers that persons with disabilities make good employees. In particular, persons with cognitive disability make great long term workers in entry level jobs. Increasingly, employers are learning that they can save money on hiring a person with cognitive disability to fill positions that have a high turnover rate when persons without disability hold those positions. Actual equal opportunity, well, not quite. The bias against persons with disability is evident in the workplace as employers are simply a subgroup of a larger population who hold the same biases. However, employers go to church and if the church were to involve persons with disability, there would be a greater opportunity for employers to know persons with disabilities and potentially employ them. The gains from network membership are also great in terms of increasing employer tolerance for minor social skill "deficits." More on this aspect of network development is provided at the following website <http://www.jeffmcnair.com/CSRD/networks.htm>

Access to housing, well, they have access to what they may be able to afford. There used to be a program whereby persons with disability were able to receive supplements such that their rent would be no more than a third of their income, however, for whatever reason new applications are not being taken. As a result, I have one friend who is an adult with cognitive disability who pays over 700$ for his apartment and another friend who pays about 260$ for the exact same apartment. The second got into the program when they were still taking applications. Now imagine getting a little over 700$ per month in Social Security, and then having a part time job on the side (part time as you don't want to loose your Social Security benefits) and trying to pay 700$ in rent. As he has stated, he hasn't had the luxury of eating out at McDonald's in the last 6 months because he can't aford it. So access to housing? Access to housing in the worst areas of town.

Health care is better than I might have thought if I hadn't had contact with many of the people I know. I have one friend who has received two kidney transplants, and has been in the hospital on numerous occasions. I have another friend who is dealing with depression who has received great medical support both in terms of long term hospital care, outpatient services and even assistance with medication. Both of these persons have developmental disabilities. Perfect, no, however, I would say it is better by comparison than say housing opportunities by far.

The folks I know also have access to public accommodations (including travel assistance) and various facilities and services. Of course I am not privy to every aspect of their lives, however, I hear few complaints about busses, etc.

So the right to life in terms of other rights is a mixed bag. The church holds huge potential in improving access to other right simply through their inclusion of persons with disability.



Monday, November 29, 2004

U.S. Catholic Bishops part 3

The following is from the "Doctrine and Pastoral Practices" website sponsored by the United States Conference of Catholic Bishops. This is available at http://www.ncbuscc.org/doctrine/disabilities.htm

"3. Our defense of life and rejection of the culture of death requires that we acknowledge the dignity and positive contributions of our brothers and sisters with disabilities. We unequivocally oppose negative attitudes toward disability which often lead to abortion, medical rationing, and euthanasia."

The notion of a culture of death has been well described by Dr. Wolf Wolfensberger. He uses the term "deathmaking" to refer to a wide variety of programs, positions, laws which would in total contribute to the Bishops' notion of a culture of death. I will go into Wolfensberger's notion of deathmaking at another time. The defense against the culture of death, I believe, does begin with recognizing that there is such a culture in our society. The culture of death can be related to actual physical death, or perhaps more commonly more of a "social death" in which a person with disability is relegated to life situations different from the mainstream but common to many of those with disability. Perhaps a defense of life is made when we acknowledge the diginity and positive contributions of persons with disabilities, however, I always wonder about who those to whom such a defense must be made, are. Are they even convinceable? On what basis would they see persons with disabilities as anything other than worthy of dignity? There is an evil here which must be labeled for what it is.

The notion of positive contributions once again gets back to my last entry about this statement. Somehow, we need to see positive contributions, abilities, in persons with disability in order to make the case for their lives. We need to see abilities, apparently on some scale of worth, which will move the balance of the scale toward the defense of life and the rejection of the culture of death. Honestly, I refuse to play that game because of the evil behind it which requires one to prove someone's worth. I will not argue about someone's worth. I am given a glimpse into the soul of the person I am speaking to, when I hear that they feel worth must somehow be proven. Of course those who would challenge the worth of another assume they themselves have worth.

I too, unequivocally oppose negative attitudes toward persons with disability, in particular those which lead to abortion and other forms of death making (I do share the negativity persons with disability often have toward their own disability: I would prefer that persons with cerebral palsy, for example, not have cerebral palsy). However, there are other forms of negative attitudes which don't directly lead to death which should also be condemned.

I never cease to be amazed at the negativity I see in church people. An instance arose in my own church a couple of weekends ago. Someone who is a wonderful man of God made a decision affecting adults with disability in a very discriminatory fashion, and probably never even saw what he did as being discriminatory. Somehow, he feared the impression of others in the church, in terms of turning them away, or limiting the spiritual experience he was attempting to develop. I would respond by asking, "How can you have an experience with God, when you begin the experience by excluding persons whom God loves on the basis of their disability?" Yet somehow, this seemed logical to him.

I appreciate the Bishops' strong statement in defense of life, however, we must be careful to avoid situations where even our participation in the discussion somehow provides support for those who would detract from the humanity of persons with disability.


Friday, November 26, 2004

What are we afraid of?

Yesterday, I celebrated Thanksgiving with my in-laws among others. An interesting discussion developed with my father-in-law, Dr. Wendell Searer. Wendell pointed out how people without disability often fear persons with disability. Some reasons he suggested were
  • fear of the disability being contagious
  • fear of the unpredictable nature of the social interactions
  • fear that the person with disability might strike out in some violent fashion, particularly toward one's children
  • fear of being left alone with the disabled person and "not knowing what to do"
  • fear of the entire notion of having a disabled child

Others might also be imagined. Each of these fears are irrational in their own way, yet we allow them to persist and allow them to guide our interactions with persons with disability. The best way to dispell such fears is through direct interactions with persons with disability. Hopefully, familiarity will breed acceptance.


Wednesday, November 24, 2004

Opportunity Schools Brunch

I had the pleasure yesterday of speaking to a group of people who are on the leading edge of bringing special education to Christian schools. They met at a brunch sponsored by Opportunity Schools, an organization attempting to support Christian schools as they attempt to integrate special education http://opp4kids.org The meeting was held as a part of the ACSI (Association of Christian Schools International) meeting in Anaheim, California.

Anyway, as a speaker, I sometimes find that I get insights in preparing presentations to groups, and even get further insights in doing the actual presentation. Yesterday two ideas came up.

The first is that in the early days of the special education movement which led up to laws giving persons with disability the right to a public school education (50's, 60's and early 70's) we sometimes hear about groups of parents renting churches as places to have parent run schools. The question is whether these schools really proliferated in the United States, and if so, once the federal law came into place such that these schools were no longer "necessary" where did the kids with disability just go to the public schools, and what was the churches' response? I wonder whether many of these schools were actually Christian special education schools or whether it was simply a space renting situation. If it was the latter, which in hindsight it appears it may have been, we as Christians really missed an incredible opportunity. It could be, however, that there were not as many of these church rented, parent run schools as thought.

The second idea is that the vision I share with many others, a vision of the church being open to persons with all types of disability, is not necessarily the church's vision. So a future of openness to persons with disability is a future that may not even be on the church's radar screen. This implies that our first goal needs to be to get that notion into the minds of churches and then the second, to work to make that vision for a future of openness a reality. This is very basic stuff, but it is the starting point.


Tuesday, November 23, 2004

U.S. Catholic Bishops part 2

The following is from the "Doctrine and Pastoral Practices" website sponsored by the United States Conference on Catholic Bishops. http://www.nccbuscc.org/doctrine/disabilities.htm

"2. Each person is created in God's image, yet there are variations in individual abilities. Positive recognition of these differences discourages discrimination and enhances the unity of the Body of Christ."

The notion of being created in God's image is an interesting one. It must imply something of a positive nature, I would assume. I never paid much attention to the notion when most of the people I interacted with were like me: healthy, apparently happy, got along with others, etc. But then I worked for a year in an institution for persons with profound disabilities. As I walked the halls of that institution, I passed people who literally were so physically disabled, they appeared to fluid lumps of humanity thrown to the ground that solidified to form something resembling a deflated ball. Many of them had accompanying severe cognitive disability to go along with their physical disabilities. I was involved in sensory stimulation training, which I ultimately stopped doing as I felt I was more of an annoyance than a help (I mean imagine not being able to move or communicate, and then having someone rubbing ice on your hand, or a prickly brush across your skin, with the best intentions of course, in the name of stimulating you). Anyway, I looked on those individuals and tried to reconcile the notion that they were created in the image of God with any past ideas I might have had about the concept. It was obvious to me that the image of God is not intellect, it is not physical health, or even as I once thought, social interactivity as none of these were present in these individuals. At this point in my life, it occurs that it might be that all people have a spirit. In the end it is more important from a leveling the field kind of perspective to note that we are all created in God's image. Such a perspective to my biased eyes raises the importance of those with profound disabilities and convicts my own vanity (it is easy for those without disability to see that we were created in God's image, I mean, c'mon, just look at us!).

Yes, it is also true that there are variations in our abilities. I am confident that the Bishops meant the best by this part of the statement, however, it can come off a bit patronizing. I suspect to them, it was simply the other shoe falling in relation to the image of God statement. It is true that we all have different abilities, but I really resist the "looking for the abilities in others" trap as abilities are linked often to worth. I say people have abilities because I am trying to assign them worth. Well I honestly have met people that I don't think have any abilities. And please don't tell me that their severe disability is actually the ability to bring out something in those around them. Variations in our abilities, sure, fine, however, worth is from God in being created in His image, and being loved by him. People get hung up on abilities and variations in abilities.

Positive recognition of ability differences may actually discourage discrimination and enhance the unity of the Body of Christ, but it can also be so much "whistling in the dark." I might actually have something to fear in the dark and whistling does little in light of that fact. Once again, positive recognition of ability differences benefits those with abilities. Recognition of differences in abilities if fine but it really isn't about abilities or the lack thereof. No, God says I have value so I have value. My ability to write a sentence or kick a ball, or smile in a friendly manner must be treated as irrelevancies in terms of worth. This is, I believe, where the Church is in a morass of confusion. It is not about what you can do for me, it is what can I do for you.
  • And whoever desires to be first among you, let him be your servant;
  • Even as the Son of Man did not come to be served, but to serve and give his life a ransom for many (Matthew 20:25)

Discrimination will go away when we stop having "peeing contests" over abilities and recognize that we are to serve one another. . . when we quit looking at appearances, when we quit feeling the need to affirm abilities because we are so darn fragile. The more needy, the more opportunity for service. You want to enhance unity? Lets serve one another and spend our lives for each other, for many.



Tuesday, November 16, 2004

Acknowledge God loves them

I was reading Watchman Nee today, and he makes this comment in relation to Revelation 3:7-10.

"The church needs leaders, but it also needs brothers. I believe in authority, but I believe also in brotherly love. In Philadelphia they respected authority, for they kept the Lord's word and did not deny his name. But philadelphia in Greek means 'brotherly kindness.' It was to these caring brothers and sisters that the door was opened. Let them set out to serve him together and not wait for the specialists; then we shall begin to see what the Church's service really is."

After the excuse of no money, the next most common excuse for a lack of involvement with persons with disability is "I don't have any training." But as Nee says, "serve him together and not wait for the specialists." This is not to demean specialists. I have dedicated my life to the training of special education specialists and there is much that such specialists can learn. However, don't confuse being a specialist with being a willing servant. No one is asking the average church member to develop behavior intervention plans, or teach adults with cognitive disaiblities to read, or how to develop language in those who have no language. But it is reasonable to expect them to carry on a conversation, to take someone out to lunch, etc.

In that passage in Revelation it also says, "I will make those of the synagogue of Satan, who claim to be Jews though they are not, but are liars - I will make them come and fall down at your feet and acknowledge that I have loved you" (Rev 3:9). Now I am not saying that the church is the house of Satan or that people with disbilities are the ones about whom the Lord earliers says"I know that you have little strength," however, something about the statement "I will make them come and fall down at your feet and acknowledge that I have loved you" really resonates with me.

I met a man today who along with his wife is convinced that his church refused to put a birth announcement about his disabled child in the church bulletin because the child was disabled. Elsewhere in this blog I have spoken of other situations whereby persons with disabilities or their families were ostracized by churches or church members or pastors. Too often we treat persons with disability as if we believe God does not love them. By our words or actions we say to them, "God does not love you." But before the Lord has to put me in a position where I am made to fall at their feet and acknowledge that God loves them, I want to do it of my own accord as I believe that is the heart of God.


Friday, November 12, 2004

Be a Hero by Molly Myers

My wife and I were honored when our neice, Molly Myers wrote this poem. Molly is Junior High School student. She really gets to the heart of some of the most important issues we face in integrating persons with disability into the local church.

Be A Hero
By Molly Myers

Do you look them in the eye or pass them by?
Give them rides to the store and church or treat them like fallen dirt?
Are you embarrassed of them - because they act like they're only ten?
Do you mind hearing the same story repeat, will you invite them to share
your seat?
Do they look up to you because your words are gentle and you care or are you
pompous and just not fair?
Don't stare or make fun - make them feel they are number 1!
My aunt and uncle strongly believe, that we are all equal in God's eyes, no
matter the ability, shape, color or size.
Teaching and encouraging mentally disabled is what they do.
for this they are heroes - one of a kind,
the very best you can find !
These disabled adults get to live a significantly better life,
because Kathi and Jeff, have chosen to help them through their
Be a hero in Someone's life.

U.S. Catholic Bishops Statement 1

In the November 9 blog, I listed a statement by the U.S. Catholic Bishops. In future blogs, I would like to go through various aspects of that statement and unpack them a bit. For a complete transcript of the statement I would refer you to Nov 9 and the link to the U.S. Catholic Bishops website.

1. We are a single flock under the care of a single shepherd. There can be no separate Church for persons with disabilities.

Sometimes when someone writes something such as the above, they are either responding to what they have observed, or are firing a preemptive strike. The above seems to be a bit of both. The latter following from the former.

A single flock under the care of a single shepherd implies we are all the same animal, all the same type. We are all sheep, er, I mean people. The single shepherd is Jesus. Now can you as a shepherd imagine hearing one of your sheep saying, "Fluffy is not like the rest of us and so we don't want him in our herd." As a shepherd you would probably say, "Wow, I didn't know sheep could talk." You would then say, "Shut up and get back with the rest of them, and I won't hear anything else about who is or who isn't a part of my herd." Interestingly, when an animal is rejected by its mother, like in the case of a litter of pups, the caretaker suddenly takes a special interest in the one rejected. The pups look at each other and see differences. The caretaker perhaps sees differences in appearances, but sees the pups as basically all the same. They are each a part of the litter.

The latter part of the statement says there can be no separate church for persons with disabilities. If there were a separate church for persons with disabilities, the question would be why would there be one, why would it be needed? I know of separate churches in the United States, and I honestly believe that those in leadership of those churches have a tremendous heart for persons with disability, and want to both meet their needs in a "culturally" relevant manner, and perhaps protect them from those who are not disabled. There are many problems with this perspective, however.

First of all persons with diability, particularly cognitive disability, aren't of a different culture, they are the same culturally as the rest of us. If they have developed any different form of experience, it is an experience of rejection, they are those who have been rejected. It is totally against Christian principles to say to a group of rejected people, "Hey all you rejected people, lets get together and form a church of the rejected people," at least as it relates to disability. Yes there are those who have done such things among groups like the untouchable class in India, however, that is an entirely different matter. Those people have developed to the point of having a distinct culture. You are born into that caste and as a result experience the same culture as your family etc. Now this doesn't dismiss the fact that such discrimination is wrong and should be fought, however, the situation is different.

People with disabilities are born into virtually any culture and experience some degree of rejection from that culture. So they don't really form a separate sub culture, they have experiences similar to others also experiencing disability. They group with these others not through any cultural affinity (perhaps like the deaf who have a different language in common) but because they have been relegated to the same stations in society, the same communities or parts of communities due to their near or actual poverty existence, the same agencies who provide various forms of assistance. These individuals were not necessarily born into these aspects they have come to experience in their lives, they have spiraled or gravitated toward these ends as a result of society and its constructions of disability.

Now if the church were some country club or golf membership, one might expect that there would be clubs for those who can afford them, clubs for those of importance, clubs for those with less money or influence and public clubs for those who for some reason are not able to attain the status of the higher clubs. The starting of separate churches for persons with disability is analogous to the "selective" clubs. If I can't get into the club I want to join, I will have to form my own club. Of if I cannot facilitate the integration of persons with disabilities into regular community churches, I will start a church for them. People of rejected status will generally not argue with a situation where they feel acceptance. Persons with cognitive disability will probably not recognize the philosophical issues of a separate church. But those of us who understand how things should be, who see the discrimination, must advocate for those who don't recognize the problems.

I know of a young man with down syndrome, about 14, who is still in the first grade Sunday school class. Now he is portrayed as being a "helper," however, he is much more like another first grade student. As a newcomer to that church, if I saw that young man in the first grade class, my response would be "What is wrong with him that he isn't with the other fourteen year olds?" My response would not be, "He is a good colorer." He doesn't belong in that class because it is not age appropriate for him. He belongs with his peers.

If I visit a church for persons with disability, my response is not, "Isn't it great that they have their own church!" My response is "Why aren't they with their peers?" If I attended a church local to that church, I would be ashamed that those persons with disability were so rejected, or felt so rejected that they had to start their own church. I would not tacitly accept that they were somehow different from me, of a different flock, ostensibly a different shepherd, such that they needed a different church.

You might respond, "Well what about denominationalism?" I would respond that persons with disability are born within denominations. They, at least by birth, are members of those denominations. If all the retarded people, by example, were Congregationalists, I would still argue that they should not be put in a separate Congregational church for the disabled people. But the fact that they aren't, that they represent all denominations, and that they need to form their own disabled church, indicts all of the denominations. They pat the people with disabilities on the back and say, "See you later" perhaps relieved that they no longer have to address the "problem" of disability.

But because we are one flock with one Shepherd, and should believe that we should all be one church, we need to do the required work to find persons with disability, bring them into our congregations, fight the rejection. Let the discriminators form the "Our Lady of those who Reject disabled People" church and they can deal with the Lord on the final day. Rather than rejecting those with disability, we should root out those who discriminate and reject them, find those who are unable to soften themselves and the environment to persons with disability and reject them.

My students at CBU have been interviewing their pastors about programs for persons with disability within their home churches. It has been interesting. A typical comment is, "We would welcome them if they came. We have elevators and are wheelchair accessible. We have disabled parking!" (Many of these things, by the way, were not there until required by law). But what they don't realize is, why would a group of people who have been rejected in the past suddenly go to a place which has rejected them? It would be like an all White church in the South in the 1960's saying, "We would welcome all the Black people if they came here." Well if you really wanted those people to come, you would need to go out and find them. You would need to try and convince them that they really were wanted there. To sit back and say "We would accept them, but none have come" is truly foolish in an age of discrimination. The fact that there are churches populated by persons with disability almost exclusively is a testimony to our failure.


Tuesday, November 09, 2004

Something is happening

Recently I have been impressed with how the Lord is working in the area of disability and the Church. Many folks from a variety of Christian faith traditions, and professional areas seem to be converging on the notion of helping churches in particular and the Christian faith in general to be more open toward persons with disability. People are dreaming big dreams, people are recognizing discriminating attitudes when they come across them and speaking out, and people are recognizing that they have a role in the changes we are trying to make. I provide one example of someone dreaming big, but such dreams are being multiplied in a variety of venues.

I had the privilege of lunch with Bob Drummond (I really had planned on paying, but he insisted, and I guess I didn't resist as much as I could have) last Friday. Bob is the Executive Director of Opportunity Schools, a program to help Christian schools develop special education programs. Anyway, Bob's dream is that all children with disabilities (particularly those with mild/moderate disabilities) who want to have access to a Christian school education will have access to one by 2010! Wow. That doesn't mean the program will be across the street, however, there would be the option should one choose to exercise it.

I am particularly excited about this because leaders like Bob, are going to influence the Christian school movement to increasingly include persons with disabilities in their big dreams. Changes in practice begin with changes in dreams, in vision. Christian schools are another aspect of the church that is attempting to be more open to those who have often been overlooked in the past.


U.S. Catholic Bishops

The following is from the "Doctrine and Pastoral Practices" website sponsored by the United States Conference of Catholic Bishops <http://www.nccbuscc.org/doctrine/disabilities.htm> I became aware of this thanks to a student of mine at Cal Baptist.
The document is titled,
"Welcome and Justice for Persons with Disabilities
A Framework of Access and Inclusion
A Statement of the U.S. Bishops"
The following quote begins after a brief introductory paragraph.

"This moral framework is based upon Catholic documents and serves as a guide for contemplation and action. We hope that the reaffirmation of the following principles will assist the faithful in bringing the principles of justice and inclusion to the many new and evolving challenges confronted by persons with disabilities today.
1. We are a single flock under the care of a single shepherd. There can be no separate Church for persons with disabilities.
2. Each person is created in God's image, yet there are variations in individual abilities. Positive recognition of these differences discourages discrimination and enhances the unity of the Body of Christ.
3. Our defense of life and rejection of the culture of death requires that we acknowledge the dignity and positive contributions of our brothers and sisters with disabilities. We unequivocally oppose negative attitudes toward disability which often lead to abortion, medical rationing, and euthanasia.
4. Defense of the right to life implies the defense of all other rights which enable the individual with the disability to achieve the fullest measure of personal development of which he or she is capable. These include the right to equal opportunity in education, in employment, in housing, and in health care, as well as the right to free access to public accommodations, facilities and services.
5. Parish liturgical celebrations and catechetical programs should be accessible to persons with disabilities and open to their full, active and conscious participation, according to their capacity.
6. Since the parish is the door to participation in the Christian experience, it is the responsibility of both pastors and laity to assure that those doors are always open. Costs must never be the controlling consideration limiting the welcome offered to those among us with disabilities, since provision of access to religious functions is a pastoral duty.
7. We must recognize and appreciate the contribution persons with disabilities can make to the Church's spiritual life, and encourage them to do the Lord's work in the world according to their God-given talents and capacity.
8. We welcome qualified individuals with disabilities to ordination, to consecrated life, and to full-time, professional service in the Church.
9. Often families are not prepared for the birth of a child with a disability or the development of impairments. Our pastoral response is to become informed about disabilities and to offer ongoing support to the family and welcome to the child.
10. Evangelization efforts are most effective when promoted by diocesan staff and parish committees which include persons with disabilities. Where no such evangelization efforts exist, we urge that they be developed.

We join the Holy Father in calling for actions which "ensure that the power of salvation may be shared by all" (John Paul II, Tertio Millennio Adveniente, n. 16). Furthermore, we encourage all Catholics to study the original U.S. bishops and Vatican documents from which these principles were drawn."

I found this a wonderful statement overall so I provided it here (with the weblink), but I will also go through the many points raised by this statement in future blogs. The U.S. Conference of Catholic Bishops website is searchable, and has much good information.


Friday, November 05, 2004

Understanding Social Support

Social support has been defined by Cobb (1976) in the following manner.

Social Support is "information" leading someone to believe
  • He/she is cared for
  • He/she is loved
  • He/she is valued
  • He/she is esteemed
  • He/she belongs to a network of communication and mutual obligation

Cobb states that, this information fulfills social needs and protects from adverse consequences.

Robertson et al. (2004) observed that among persons with mental retardation (in particular) living in community group homes, 3-4% had a "neighbor" with out mental retardation. Overall, they had 3 or fewer persons in their social network (most often staff or family) and 10% had nobody.

I know I too can do much better in this area, but I provide an exhortation nonetheless.

If you were to ask me what a neighbor is (I hope you are not trying to justify yourself) I would refer you to Luke 10:29 and following where Jesus provides a good definition in the form of a parable. In case you are unfamiliar with the Bible, it is the story of the "Good Samaritan" which has become a part of culture, at least in America.

If you were to see someone lying along side of the road beat up and hurt, would you say, "I don't know what to do because I don't have any training" and then walk on? Of course not, you would do what you could do. Unfortunately, the most common excuse I have heard from Christian churches or Christian individuals as to why they aren't reaching out to persons with disability is "I don't have any training." Perhaps Jesus should have added that excuse in the story of the Good Samaritan. He might have said,

"But by coincidence, a certain priest was going on that road; and seeing him, he passed on the opposite side. A 20th century church member came upon the man and said to himself, 'I don't have any training, so it is not my responsibility to help this man' and continued on so he wouldn't miss The Simpsons. And in the same way, a Levite also being at the place, coming and seeing him, he passed on the opposite side."

At the NACSW conference, Jim Wallis (Call to renewal) spoke of an inner city worker who made the comment, "We are the people we have been waiting for" and spent herself working with persons in inner city Washington D.C.

Perhaps my altered version of the story of the Good Samaritan might be further changed in the following manner.

"But a certain traveling Samaritan came upon him, and seeing him, he was filled with pity, and said to himself, 'We are the people we have been waiting for. I am the person I have been waiting for.' And coming near, he bound up his wounds, pouring on oil and wine . . ."

If not you, who. If not now, when.



Tuesday, November 02, 2004

NACSW Conference

I just returned from a week in Washington D.C. at the North American Association of Christians in Social Work conference. This was my second year in attendance, and it is a wonderful group. Highly motivated professionals serving a wide variety of disenfranchised individuals, all from a Christian perspective. Those struggling with integrating their faith into their state based professional practice, those working in faith based organizations meeting with academics and students.

For me, the highlights of the conference were presentations by David Beckman, president of Bread for the World (bread.org), Tony Compolo (tonycampolo.org) and Jim Wallis of Sojourners and Call to Renewal (calltorenewal.com). In each of these presentations, I noted the lack of mention of persons with disability in their calls to address issues of poverty. I spoke up in one of the sessions, and the speaker graciously replied that had overlooked that population, and not just in his presentation. I replied that the Church has overlooked that population.

It was then fun for the rest of the conference having people come to me saying, "You were the guy who raised the disability question!" Of course it was fun to have made such a contribution, but the fact that others resonated with my comment was very encouraging. One of the above speakers also indicated close personal experience with disability and how he felt that the church had done a good job in his regard. I replied that I was glad, but inwardly thought, "C'mon, of course your family member will have a positive experience, because of who you are." That is not to diminish what might have been a great church program, but sometimes persons in leadership think their experience is everyone's experience. I remember a university administrator indicating that he had always had a good and quick service from the campus' duplicating center when asked about them. Those of us in the audience replied, "Of course you did." He quickly got the connection that his experience was probably not the same as the rest of us as students, staff, etc.

But I am hopeful, and I am encouraged after attending the conference.

A small group attended my session on network assessment (which included a good dose of propaganda about church and disability) and seemed in agreement with the importance of the church as a network for adults with disability. A few figures from my presentation
  • 3-4% of persons with cognitive disability have a "neighbor" without disability
  • < or =" 3">
  • 10% have nobody
  • those in networks are largly paid staff and family
  • from Robertson et al. (2004)

Apparently few people with disability have a neighbor. But then, you might respond, "Who is my neighbor?"

Well . . .


Saturday, October 23, 2004

"Make the little children suffer," I mean, "Suffer the little children"

I was talking to a Catholic friend today. She told me how her priest didn't want kids with disability to come to catechism because they were too noisy.

"The little children were brought to Jesus for him to place his hands on them and pray for them. But the disciples rebuked those who brought them. Jesus said, "Let the little children who are quiet come to me and do not hinder them" (sorry, strike that) "Let the little chidren come to me and do not hinder them unless they are disabled" (sorry, my bad again) "'Let the little children come to me and do not hinder them, for the kingdom of heaven belongs to such as these.' When he had placed his hands on them, he went on from there." (some old texts say, "Suffer the little children to come to me")(Matthew 19:13-15)

I suspect the children in this case were perfect little angels, bright eyed and intelligent, without a blemish of any kind, and quiet, wonderfully quiet. They were also probably clean and dressed well, oh yeah, and with good social skills. You see a lot of children like that running around in third world countries, particularly 2000 years ago.

If it weren't for how wrong it is it could be laughable. "The kids are too noisy." I would love to go toe to toe with such a person and have him name 15 children with disability that he knows, and how much time he has spent with them which gives him the experience to make such claims to those under him. Have Christian leaders never heard the story of the little children and Jesus? And what was the point of them coming to him? So that he could place his hands on them, one would assume to give them a blessing.

Our response today is not only do we not want to bless them, we may actually want to curse them. "They are too noisy" or "They have bad social skills" or "They are a black hole for service" or "They will disrupt the other children." In contrast, imagine a catechism class where the teacher says, "Jesus allowed all children to come to him, and so will we. We all need to learn to accept and love all children, so as long as I am the Catechist, these children will be given access."

An accepting situation such as this truly will reflect that "the kingdom of heaven belongs to such as these."

No retreat.


Friday, October 22, 2004

Metaphor as metaphor vs. metaphor as reality

The Bible is filled with various metaphors useful in illustrating a point for Christians. Everything from the notion of God as our Father, to us as sheep, are actually metaphor for the purposes of instruction or the assistance with understanding. God is our Father as most of us have had fathers, most of them have been loving, and we can relate to the notion of Father. Apparently God wants to relate to us as a father to his children as well, or he would have chosen some other metaphor to teach us about who he is and how he wants us to relate to him.

There are other metaphors in the Bible, which when taken out of context can result in people being misunderstood and potentially ostracised. For example, the Bible will at times talk about people as being spiritually blind. It is a great metaphor as all one who is sighted needs to do is close her eyes to recognize that she would feel at a great disadvantage. The idea is, that spiritual blindness is similar to physical blindness in its effect on being able to find one's way. However, physical blindness is not spiritual blindness. A person who is physically blind is not necessarily spiritually blind. To equate the two would be a great disservice to the person who is a physically blind Christian.

At other points, people are given a disability by God for greater or lesser periods of time. Paul is blinded on the road to Damascus. Zechariah is unable to speak because of a lack of faith, Nebuchanezzar loses his mind because of his pride and vanity. However, not all who are blind are blind to catch their attention because they are persecuting the church. Not all who cannot speak are that way because of a lack of faith. Not all who deal with various forms of mental illness are that way because they were full of themselves. In fact in the overwhelming number of cases, blindness, speech or mental illness have nothing to do with an individuals behavior at all.

Unfortunately, the exceptions have resulted in Christian social constructions which make them more of the rule. As with the disciples we asked "who sinned?" when we see a person with disability. We ask, "What is God trying to teach you?" when we see a blind person, or think of the destructive lifestyle one must have lived to experience mental illness. We overgeneralize the experiences of a few people in history.

Whether it be the misapplication of a metaphor or the overgeneralization of experiences of people shared in the Bible, we must be careful in our application to people with disability. Metaphor is useful when it is taken as metaphor. The life experience of another is useful when taken within the full picture of the other person's life.


Friday, October 15, 2004

Life changing interviews

This past Wednesday evening, I brought four of my friends, adults with developmental disabilities, to my class on exceptional children. My friends, Amy, Joyce, Mark and Larry, were interviewed by me and then later by the students themselves. We all had a great time laughing and learning.

It always amazes me, however, how such interactions can dramatically change people in terms of the way they think. Most or all of their lives, they have lived with the societal construction of what disability is and who people with disabilities are. They have lived with notions that they are sad, that they are discouraged about their lives, they look on people without disability thinking how unfortunate they are. However, when one meets a person with a developmental disability in particular, they learn that they are happy, they enjoy their lives, and they hardly give people without disability a second thought. I find that they largely don't even discriminate between people with or without disability in terms of friendship. Obviously my friends with disability recognize that I have a car, for example, and most of their other friends don't, but that perspective is much the same as I would have of a friend who happens to be wealthy in comparison to me. I think how it would be nice to have some of the same things she/he has, but beyond that I really don't give it much thought.

One friend of mine, has talked about how he wishes his apartment wasn't as expensive as it is, but that is mostly about having more expendable income to do other things he wishes he could do. We all feel that way at times.

As we debriefed at the end of the class session, I struck me that the friends I had brought to meet with my students had made such an effect them. I remarked to my students at the end of the class, that people like those they had met are the ones that the church is not going out of its way in bring into the church and are not being served in Christian schools. I encouraged them when they went to church this week to look around at their church to see if they saw any people like those they met at their church. If they didn't, then why not? They are definitely there in the community and would greatly benefit from church involvement.


Tuesday, October 12, 2004

Don't buy the platitudes

A student of mine recently passed on a web link to an article she had read. On the one hand, I think she wanted me to see the article as she thought it was good, and on the other hand, she wanted my perspective on the article. Written by a profesor at Brigham Young University, it makes many good points about critical factors in the raising of a child with a disability. However, near the end, it states,

"When Nikki received her patriarchal blessing, she was told she had been given this special experience in mortality because of the greatness of her soul. She helps others learn compassion and understanding. I am grateful for all the good she has done for our family as well as for many others. Nikki teaches us that love, kindness, and charity are not just for the swift or strong, but they are for those who struggle. I have the firm hope of an eternal relationship with Nikki. I know that when she is finally healed of ther disability, I will learn yet more from the greatness of her soul."(Williams, 2004, Intellectual Reserve, Inc.)

People with disability being given a special experience in disabilty due to the greatness of their soul. I suspect that the person making this claim did so with the goal of lauding her friend Nikki through her description, however, it actually does just the opposite. Nikki is not seen as a person, she is seen as the posessor of some special greatness of her soul. Who she is, is interpreted through the lense of her disability. So she isn't my friend, or a person I know, I first see her as a disabled person, and I then make a construction of who she is to make her more acceptable to me and to those around me.

Have you ever been on a committee where each person has a particular purpose for being on the committee? This same committee looks at you and tries to figure out why you are there. It is definitely an uncomfortable feeling. You feel like you have something to prove in order to be accepted.

We do that with people with disability. We obviously see our own worth in our own eyes (we all struggle with vanity). We then look on a person with disability and wonder what their purpose might be. We exalt ourselves by seeing ourselves through our vanity, and demean others by also seeing them through our vanity. I Corinthians 1 says, "He chose the lowly things of this world and the despised things - and the things that are not - to nulify the things that are, so that no one may boast before him." The reason we are accepted is not that we have a purpose, something that necessarily sets us apart. We are accepted because we are people, so that no one can boast. But because I obviously see that I am of great value to the Lord because I am athletic or witty or smart or attractive (I am boasting), I must also find a reason for the person with disability (In my prejudice I don't think they can boast because they aren't athletic, witty, smart or attractive, so I give them something so they can also be able to boast). I say that they have a particularly great soul. But deep down we don't believe it. Mostly we don't believe it because it isn't true from a scriptural basis, but also deep down we know that we are just trying to give the other value (which isn't necessarily a bad thing). The problem is that we demean others by not telling them the truth. As Wolfensberger has indicated, we develop role perceptions rather than treating people as normally as possible.

So don't buy the platitude given by anyone, if it doesn't reflect the truth of the scripture. Besides, how can I surpass the notion that God finds each of us infinitely valuable just because we are a creation of His, because we are.


Thursday, October 07, 2004

Deconstructing disability: Role perceptions/holy innocent

In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following role perceptions are from Wolfensberger.

7. The deviant as a holy innocent

The notion of persons with cognitive disability as being holy innocents is a perception which permiates Christianity. We hear of people being "God's special children" or "Angels unaware." No doubt those who use such characterizations are in some way trying to elevate the perspective of persons with disability, or encourage the parents or families of these persons, however, if they are God's special children. . .
  • Why do we fear them?
  • Why don't we want them in our own family?
  • Why aren't Christian churches working feverishly to bring them into the fellowship?
  • Why aren't Christian schools looking for every possible way to serve them?

You see, those who say they are God's special children, really don't believe they are. If they actually did, their behavior would change toward them. I don't agree that they are God's special children, but if I did actually think that I would base my perspective on scripture, and it would hopefully impact the way I live. It's like saying "We are all the same in the eyes of God." Well, if you believed that, you would be as interested in bringing persons with cognitive disabilities into your church as you would business professionals.

But there are other issues with the holy innocent perspective. The holy innocent is incapable of voluntarily committing evil or doing wrong. They are simply misunderstood. By saying such things, you remove their humanity in that the Bible is crystal clear that we have all sinned and have hearts that are "desperately evil." I do no favors when I act in a paternalistic manner when I see a child doing something wrong by saying that he can't help himself.

When a friend of my son's was young, he had an anger problem. When I confronted his parents about the problem, they replied that people just get angry in their family and that he can't help himself. My response was that he will help himself when he is at my house or he won't be welcome there anymore. Can you imagine an employer of a person with a disabilty who does something innappropriate in the work environment gathering customers together and saying, don't mind him, he is a holy innocent and really either can't help himself, or is basically unable to do something wrong. They would indicate their position on his perspective by no longer frequenting the store. By holding persons with disability to the same high standard for behavior as others, we challenge them to grow and our high expectations will spur them on to do better.

A friend of mine with cognitive disability called my home once when my son was younger. He had been trying to reach me, and as we all face at times trying to reach someone, was having trouble. He became frustrated and started swearing at my son over the phone. My son was old enough to take it in stride, and told me of the interaction. My response was to contact my friend and tell him that if he ever swore at my son again he would no longer be my friend. My friend was just a man, a man who had lost his temper and needed to be called on it. Since that time, he will still get frustrated with me at times, but he won't swear at anyone in my family because I applied the same standard to interactions with him that I would with anyone.

The holy innocent also has about it an infantilizing aspect. When preschool children do something wrong, although we correct them, we tend to smile inwardly. At times their misbehavior is almost cute. That same perspective is often applied to adults with developmental disabilities. But we do them no favors if we treat such behavior as cute. A general public which has little tolerance will not look on the behaviors as cute. In fact the behaviors might actually support the societal construction they have assimilated from the environment (using Tylers words see 10/1 blog).

Last evening in a class I am teaching at California Baptist University, a student commented to me that persons with disability, specifically cognitive disability have a "special relationship with the Lord." My first response was to tell her that so did she and so did I, however, I then went on to ask where in the Bible does it indicate that persons with disability have a special relationship with God? She mentioned several verses which have been cited in this blog which indicate that God is particularly interested in the "things that are not." But once again, when it was all boiled down, we ended with the position that somehow simply because a person has a disability, they become a holy innocent, a special child of God.

Even though those who use this phrase mean well, we have to get them to either, 1) stop using it, 2) justify it from scripture, or at the very least 3) get them to act as if they really believe it is true.



Monday, October 04, 2004

Deconstructing disability: Role perceptions/eternal child

In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following role perceptions are from Wolfensberger.

6. The deviant as an eternal child
Unfortunately, much work in psychology has led to the perpetuation of this role perception. We have measures of intelligence translated into "mental age" apparently because such a measure will help professionals in programming. So we hear people say that Johnny has a mental age of 12 or the mental age of 11 months. Even people who are not professionals talk about a person as having the mind of a 6 year old.

We see people as never growing up. Therefore, we place them in childish enviornments with decorations unfitting for their age. At times we even see adults with disability housed with children, the obvious thinking being that they are functioning at the same age level.

As a reaction to this, beginning around the 1970's, professionals have developed the term "chronologically age appropriate" as a description of programs, interactions, environments, etc. for persons with disability. We want these aspects of their lives to reflect their chronological age, not their supposed mental age. There are a variety of reasons why we would want to do this.

Persons with disability simply by virtue of the fact that they have a disability are often stigmatized. Disability is not seen simply as a characteristic of these individuals, it is a negative characteristic which limits typical positive interactions which might be enjoyed between people. This of course depends upon the mindset of the person without disability, however, at the very least, stigmatizing factors may at least cause one to pause. They cause one to wonder, thinking that something is not quite right. These stigmatizing factors may be overt, or discovered through further interaction. In order to facilitate normalization in interactions, we do well to not add stigmatizing factors to people who may already be devalued by societal constructions.

Back in the early 80's (before I knew better) I once worked at a camp for adults with cognitive disabilities. The theme of the camp was "cowboys and indians." We rode horses, shot guns, made bows with arrows, indian jewelry and headresses, and barbecued. The problem with this was that the persons with disability who attended the camp were adults, some in their 50's with cognitive disability. They had a great time at the camp, but the following week, some were walking around Pasadena California with headresses on carrying a bow and arrow. Now they wouldn't be a danger to anyone (as hard as we tried, we weren't very good bow makers), however, what we did in holding a camp that was not age appropriate was to send them into the community with artifacts that they carried around which did little more than stigmatize them. Can you imagine walking down the street and seeing a fifty year old guy with a bow and arrow and a headress (made out of construction paper no less) walking toward you on the street in Pasadena? I suspect your response wouldn't be to think, "I gotta get me one of those head dresses" but rather "What is wrong with that person?" By engaging in activities which were not age appropriate, particularly those which produced artifacts that the people carried around for the next 3 weeks, we hurt their potential for positive interactions with the general public by stigmatizing them.

By contrast, there is a fellow who attends my church. Lets call him Chuck (not his real name). Now I have know Chuck for probably 10 years now. He is a good looking young man who dresses well. He regularly attends church with his mother, and I believe he works in some sort of sheltered setting. The point is, you would never pick this guy out of a crowd as being someone with a cognitive disability. So in every first interaction, he has the opportunity to sell himself to you (if he cares to) as the great person that he is. In discussion you would quickly learn that he has a disability, however, you would also learn that he is a great guy. Contrast that with the people I helped to stigmatize with the construction paper head dresses. Certainly your approach to them would be different. You would approach thinking these persons have cognitive disabilities.

But the typically reply is, "But they enjoy the juvenile activities." Well, there may be juvenile activities that I enjoy as well, but I am careful to whom I share that interest of mine, or at the least, I have competence in other areas to overcome the deviance of my preoccupation with some juvenile activity.

The poster child for the competency/deviancy hypothesis (I first heard described by Dr. Marc Gold) was Dennis Rodman, the outstanding NBA player. As long as Rodman got 17 rebounds a game, he could behave poorly and act crazy. He really was an outstanding rebounder and defender. But as he aged, his competence (rebounding) began to wane, while his "deviance" (acting crazy) remained the same. Ultimatley, he was unable to play any more in the NBA. It is arguable, however, if he had been a better "citizen" he might have lasted longer as there would have been less deviance to be overcome by competence.

Persons with disability, at times due to their disability and at times due to the societal construction of their disability, carry around "deviance" which must be compensated for with competence. Age inappropriateness on the part of the person with disability only adds to their perceived deviance, requiring more competence of some type to overcome it. If the captain of the football team starts carrying a Spongebob Squarepants back pack, it will be cool. However, if the person with cognitive disability who attends the same school tries to initiate the style, he will be devalued because of the lack of competence he has to counterbalance the deviance.

So by way of instruction, when you interact with a person with cognitive disability, independent of the severity of their condition, the way you interact, as much as possibile the content of your interactions, the enviornment for your interactions, etc. should be as age appropriate as is possible. Your language might be simple in style and content, however, it is not age inappropriate or demeaning, and reflects a respect for the person's age.


Friday, October 01, 2004

Attitude development

In the classic book on curriculum theory, Basic Principles of Curriculum and Instruction (1949) Tyler discusses four chief means by which attitudes "commonly develop." He states the following.

"The most frequent method is through assimilation from the environment. The things that are taken for granted by the people round about us, the points of view that are commonly held by our friends and acquaintances are illustrations of environmental attitudes which are frequently assimilated without our having been conscious of them.
A second and perhaps the next most common method of acquiring attitudes arises from emotional effects of certain kinds of experiences. In general if one has had satisfying experiences in a particular connection, he develops an attitude favorable to some content or aspect of that experience while if he has had an unsatisfying effect from the experience, his attitude may become antagonistic.
The third most frequent method of developing attitudes is through traumatic experiences, that is, experiences which have had a deep emotional effect. Thus, a youngster may develop overnight a great fear of dogs from one experience in having been bitten by a dog.
Finally, a fourth method of developing attitudes is through direct intellectual processes. In some cases when we see the implication of a particular object or process, we are led to develop an attitude favorable or unfavorable to it from the knowledge which we gain from this intellectual analysis". . . Unfortunately, attitudes formed through definite intellectual processes are not so frequent as those obtained in other ways. Of these four methods of developing attitudes, the third is not likely to be useful to the school. Traumatic experiences involving the intense emotional reactions are too hard to control to be used systematically in an educational program. Hence, schools will have to lean heavily upon the use of a process of assimilation from the environment, of developing attitudes through emotional effects of particular experiences, and through direct intellectual processes" (p. 76).

Once again, attitudes develop through
  • a process of assimilation from the environment
  • emotional effects of particular experiences
  • direct intellectual processes

In thinking about societal attitudes toward persons with disability as reflected in societal constructions, the attitudes developed in different people in different ways. Traumatic experiences must also be factored into the mix, although we cannot use them necessarily to develop attitudes. I would suspect that by and large, most attitudes are developed through assimilation from the environment. Among some informed groups, direct intellectual process has probably had some impact. Some people might have had emotional effects from experiences, but using myself as an example, experiences might cause negative effects, or might cause one to devote his life to these persons with disability (in their inclusion, education, etc.).

"Several generalizations may be suggested regarding learning experiences for developing attitudes. In the first place, the school and community environment should, so far as possible, be modified and controlled so as to promote desirable attitudes. In many modern communities there is disjunction between the school and the home, the school and the church, the school and the rest of the community with regard to the attitudes that are developed. The environments are inconsistent; values, points of view are taken for granted in the press that are denounced in the pulpit, the values emphasized in the motion pictures are in conflict with those which the school seeks to develop. There is a great need for seeking to modify the environment of the youngster throughout his experience in order to help him develop desirable social attitudes. This means increasing the degree of consistency of the environment and helping to reinforce the emphasis upon social rather than selfish attitudes" (p. 76-77).

As I think through the various environments from which attitudes might be generated, I am not sure which one I would choose as the model I would want to proliferate. School, community, home, church, press, pulpit, to some degree each of these attitudinal repositories beg for the modification and control Tyler alludes to. The church distrusts the public school which distrusts the community and so on. Teacher training becomes more rigorous because the community distrusts the school as it is the teachers' fault children aren't performing as they should. Schools point to homes. Once the appropriate attitude is found, the job is to try to align everyone to that attitude.

Sometimes that alignment can be orchestrated through law, at least aspects can. I can force integration with the hopes that when people are together, attitudes will change to reflect what they learn through the integration experience. Forced integration might be thought about in a variety of ways, but I am thinking about integrating persons with and without disability. As far as the church is concerned, I must rely on the good will of the people. If my church has too much of something different, I will simply go to another church which has more of the same that I am used to. People who are willing to take the risk of having their attitudes changed can often be the ones to lead the way in altering social constructions, however, that doesn't always work as they are typically marked as being different (meaning open minded) and not all open mindedness is good.

Even within families, the experiences you might think would soften attitudes toward or at least cause dissonance with the societal construction aren't always perceived that way. Rather than seeing the construction as unreflective of reality, they define the situation with the construction until they are beaten into submission by the dissonance between the construction and reality. A price was paid for the information gained from that experience. As long as the experience of disability is deselected or remote, the societal construction is employed unchallenged. The saddest thing, however, is when the construction is embraced by parents and significant others and fed to the person with disability. The negative self-perception the person with disability gains becomes the filter through which they define themselves, their social interactions, their ambitions, and the world.


Tuesday, September 28, 2004

Deconstructing disability: Role perceptions/object of ridicule

In 1972, Dr. Wolf Wolfensberger, wrote about what he called deviant role perceptions. These were ways in which persons with disability were sometimes perceived. The word "deviant" should be thought of in terms of differing from the norm (American Heritage dictionary). The word deviant itself can be very charged in its connotations. I thought it might be interesting to examine each of these role perceptions briefly and think about the applications for today. The following role perceptions are from Wolfensberger.

5. The deviant as an object of ridicule
Elsewhere in this blog, we have discussed the film Freaks. This film used sideshow performers as the actors. It was taking these individuals who for whatever reason chose this means of livelihood and put them on the big screen. The reaction of the "normal" people attending the side show in the film provide the true indication of how these persons were portrayed. One woman screams and faints. Hardly the response one would have when visiting other parts of the circus.

The "freak show," however, was not something new even in the 1930's. Wolfensberger speaks of medieval society, or the court of Montezuma as being populated with persons with characteristics different from the norm, with these same individuals "housed after the manner of a modern park z00" (p 23).

I can remember when imbecile, moron and idiot, terms I had come to laugh at when uttered by Moe, Larry or Curly, took on a different meaning. They were actually the labels for persons with mental retardation at the time the Three Stooges films were made. Now I still love the Three Stooges, but I tend to cringe when one calls another an imbecile as I consider the use of the term in the time that those films were made. It would be like me saying, "You profoundly mentally retarded person" to someone I was upset with. Wolfensberger speaks of the "moron" jokes that were prevalent around the time of the writing of Normalization. Take your most offensive racial slur and come up with a series of jokes using that term, and you get a feel for the inappropriateness of that term to those experiencing cognitive disability.

I can remember a time when I read a newspaper article to the group of cognitively disabled friends I meet with each Sunday. We call our group the "Light and Power Company." Anyway, the article spoke of how someone referred to a member of our group (that was why I was reading the article, to help them through the offensive nature of the article) as a "retard." I was struck by how the person to whom the label was referring, said, "They shouldn't use that kind of language in the newspaper."

So chide someone if they say someone else is retarded, or is a retard. That word takes a group of wonderful people and stigmatizes them indirectly. It supports negative aspects of the social construction of who persons with disability are.