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.

McNair
(fcbu)

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.

McNair

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.

McNair

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.

McNair

(fcbu)

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.

McNair
(fcbu)

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.
McNair

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
strife.
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.

McNair
(fcbu)

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.

McNair
(fcbu)

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.

McNair
(fcbu)

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.

McNair

(fcbu)

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 . . .

McNair
(fcbu)

"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.

McNair

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.

McNair
(fcbu)

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.

McNair
(fcbu)

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.

McNair
(fcbu)

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.

McNair

(fcbu)

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.

McNair
(fcbu)

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.

McNair

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.

McNair
(fcbu)

Christian societal constructions of disability

Christian societal constructions of disability . . . what the heck could that mean? Well, it has to do with the way that the concept of disability has come to be understood within Christian environments.

What does it mean for a Christian family to have a child with a disability?
What do people think when they see this family with a disabled family member?
What have Christians come to understand is the reason a particular family has a family member with a disability?
What does it mean to a person to have a disabilty, whether they acquired it or were born with it?
Are there common perceptions which have been taught or at least sufficiently supported that they have become a part of the way Christians think about disabilty?
What is mental retardation, from a Christian perspective?
What societal constructions, that is, what commonly accepted notions accompany disability in Christian settings?
Why does a person have a disability?
Where did the disability come from?
What does disability imply about God?
Does God cause disability?
What does disability imply about people?
What is the responsibility of people in the etiology of disability?
What is the responsibility of people in the life of a person, either for a Christian or a non-Christian with a disability?
What does disability imply about the church?
What is the responsibility of the church in the life of a person, either for a Christian or a non-Christian with a disability?
Does the Bible have anything to say about disability?

The way these kinds questions would typically be answered by an average Christian would give an indication of what the Christian societal construction of disability is. the answers would indicate how Christians understand disabilty, and the degree to which a Christian perception might be similar or different from the perception of a non-Christian.

For example, in some societies, the societal construction of women is that they are below men. In some societies, the societal construction is that some ethnic groups are below others. People might give reasons for the societal constructions they have come to accept, overtly or otherwise. If I perceive persons of a different ethnicity as somehow less than myself, I provide a glimpse into my belief system, and depending upon the basis for my perceptions, I will be considered rational or irrational.

The Christian societal construction of disability provides a glimpse into the Christian belief system for those inside or outside of the faith, and the basis for Christian perceptions will also come under scrutiny to determine whether they are rational or not. I have experienced aspects of the Christian societal construction which leave me wanting and wondering. As a lifelong Christian, I see people with disability, people without disability and the Christian scriptures and want to find some consistency in it all. I want the practice of people to reflect the consistency of the scriptures, but somehow along the way, the Christian societal construction has strayed, almost into some form of fairytale fabrication. It has enough truth to feign believability, but little enough falacy that you could overlook it (if you didn't know any better) and begin the walk down a path leading to nonsense. Nonsense projected upon people with disability is what I often see in people, in churches, in Christians even. It is the Christian imagination gotten lost.

McNair

Wolfensberger on social integration

One of my favorite books on social integration, is "Normalization, social integration, and community sevices" edited by Robert Flynn and Kathleen Nitsch (1980). In an article by Wolfensberger (The definition of normalization: Update, problems, disagreements, and misunderstandings), he makes the following comments.

" . . . in the long run, no good can come of any program, including normalization, that is not based on intimate, positive one-to-one relationships between ordinary (unpaid) citizens and those who are handicapped and who would otherwise be devalued."

One on one contact is reminiscent of the idea of matching families in churches with persons with disability within churches in a life partner kind of arrangement.

"Indeed, there is little within the implication of the Wolfensberger definition of normalization that is not empirically supportable, and one would almost have to go to metaphysical systems for more broadly applicable concepts. One such system might be radical Christianity, which would subsume much of normalization, but which would also reject some(not many) of its implications."

Interesting that Wolfensberger suggests "radical Christianity." I am unsure what he means by the term radical, but I suspect the implication is something other than what is typically observed in churches.

In a second article in the same book (Research, empiricism, and the principle of normalization), Wolfensberger states
"Thus, when devalued people are served in valued settings, where familiar and valued methods are used, and together with other valued people (i.e., associated with positive images), their social desirability in the eyes of others (i.e., the potential assimilators) will be increased.
The findings also imply that the development of highly valued personal traits, such as courtesy, friendliness, generosity, hospitality, sociability, and attractive appearance, in devalued persons is extremely important in moving them toward acceptance by members of society and therefore toward the integration onto the community."

This is similar to Berger and Neuhaus' 1977 article, "To empower people: The role of mediating structures in public policy" who define the concept "mediating structures." Mediating structures being people who help a devalued group by introducing them to those who can help them, or by helping them themselves. This is the track the church should be on. By our involvement, our service, our work, we validate the lives of persons with disability and in some ways make it "cool" to serve them. The more we embrace this notion as the church the better for persons with disability and the church.

McNair
(fcbu)

Broaden your mind, Malcolm, broaden your mind!

I was reading C.S. Lewis', Letters to Malcolm, chiefly on prayer and was struck with something Lewis wrote. Although the comment was made in reference to liturgy/worship, I thought about it in terms of disability. Lewis says,

"Broaden your mind, Malcolm, broaden your mind! It takes all sorts to make a world; or a church. This may be even truer of a church. If grace perfects nature it must expand all our natures into the full richness of the diversity which God intended when He made them, and heaven will display far more variety than hell. "

Grace perfects nature. That is an interesting concept. More perfection needed, more grace dispensed. God shows grace to all people, sometimes I think me above all. God shows grace to perfect our nature. The church is God's agent on Earth. How does the church fare in dispensing grace for the perfection of nature? In order to include me, God needs to dispense grace. I accept His grace but he gives it.

There are those who need grace from the church. It is their role to receive it, however, it is the church's, our role, to dispense it such that we can perfect their nature insofar as we connect them with God, with the Body of Christ.

Later in the same letter, he writes,

"My grandfather, I'm told, used to say that he 'looked foward to having some very interesting conversations with St. Paul when he got to heaven.' Two clerical gentlemen talking at ease in a club! It never seemed to cross his mind that an ecnounter with St. Paul might be rather an overwhelming experience even for an Evangelical clergyman of good family. But when Dante saw the great apostles in heaven they affected him like mountains. There's lots to be said against devotions to saints; but at least they keep on reminding us that we are very small people compared with them. How much smaller before their Master."

I, like C.S. Lewis' grandfather, in my pride and vanity tend to have an inflated view of who I am, and therefore of my arrival in heaven. Do I actually think everything will stop and St. Paul will be looking for me to have a cup of coffee and discuss some fine point that I think I have a handle on. This is the same Saul who met Jesus and became Paul who has been with the Lord for a couple thousand years. I agree with Lewis in agreeing with Dante, that encountering the greats of the faith will be like encountering mountains, and how does one interact with a mountain.

Actually I think I might have more of a chance of coffee with my mentally handicapped friends, assuming the elect do such things like coffee in heaven. If God allows us to keep memories of life in heaven (some He couldn't I would suspect in order to make heaven truly blissful), but if He does, I would love to have a conversation reminiscent of what one finds in Keyes' Flowers for Algernon.

McNair

Deconstructing disability: Role perceptions/sick

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.

4. The deviant as sick
Another role perception described by Wolfensberger, is the disabled person as "sick." They are a diseased organism. As stated previously, that is why a medical model was adopted to treat them. People with disability are patients, not students or residents. Decisions are often made by medical personnel. It is true that there are many areas in which medical personnel are the best to make a particular decision, however, often they are not.

I once had the opportunity to work with Dr. Richard Koch. Dr. Koch at that time, was the director of the national collaborative PKU study(phenylketonuria, an inborn error of metabolism which without treatment can result in severe mental retardation). Even in the midst of the powerful research he was doing which ultimately affected the lives of thousands of persons experiencing this genetic disorder, his perspective was that the medical profession had very little to offer most people with disability. They could provide a diagnosis most of the time, but beyond that, it was the job of educators to improve the lives of the persons with disability.

Educators have at times adopted this same perspective, referring to their services not as education, but as "educational therapy."

The take home lesson of this particular role perception is that people with cerebral palsy are not contagious and neither are persons with down syndrome. The appearance of having a cold has to do with aspects of their disabilities (although I guess they could at times also have a cold). People do not "suffer" from down syndrome in the same way that someone suffers from the flu.
Additonally, there isn't a medication, for persons with down syndrome or cerebral palsy or most other forms of disability that makes it go away.

The life experience as persons with down syndrome is their life experience. How could a person with down syndrome, a congenital genetic syndrome, know an existence other than that which they were born with? Those who are less disabled cognitively, might realize they are different, but I suspect such thoughts are atypical.

Personally, I can imagine what it might be like to be blind or regularly use a wheel chair, but I really don't know. I do have some experience of feeling different because of a lack of math ability. Such a problem is hardly comparable to blindness or other disabilities, however, it can be used for a point of discussion. I am amazed at people around who understand things which I don't, but I really don't know what it is like to understand those things. My son, for example, was doing advanced calculus as a high school senior. I don't know what it is like to have that level of math ability. I guess I can imagine being able to understand something that I don't understand, but that is about the limit for me. As a medical student, I could imagine being able to take in all of the information provided, commit it to memory, and then retrieve it as necessary to answer questions on a test or from an instructor. However, the fact that I flunked out of medical school indicates that I was in a place that was beyond my ability to do those things. I know that I largely only think of myself as different when the environment that I am in makes me feel that way (e.g. medical school). In other environments, I appear to have a level of understanding beyond many of those who are in the environment with me. In those environments, I have the ability to either accentuate my strengths in comparison to another's weaknesses, or attempt to integrate them with myself and myself with them. I have a notion of what it is like to be them and they have a notion of what it is like to be me, but we really don't know.

I can remember my father used to talk with frustration about a comment my grandmother would make when she was feeling depressed. She would say, "Nobody knows how I feel." My father, a person with severe diabetes, chafed at that statement, saying, "Well, nobody knows how I feel." Which really didn't help my grandmother.

I believe this is the same for most persons with cognitive disability. They don't know how I feel and I don't know how they feel.

One thing I have to get through my head, however, is that their disability is their life experience. They are not sick, they have a different life experience. If I treat them as if they are sick, I project on them something which they are not feeling and I illustrate my own ignorance about what their life experience actually is.

McNair
(fcbu)

Deconstructing disability: Role perceptions/object of pity

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.

3. The deviant as an object of pity
Once it was understood that persons with cognitive disability were not actually a menace, their perception largely changed from a menace to an object of pity. They needed to be placed in environments where they might be protected. A medical model replaced the educational model. So health became the primary concern, not education.

I can remember working at an intermediate care facility for kids with severe to profound mental retardation, where one of the children was given a new pair of tennis shoes. As with anyone, after a few hours, the student developed a blister on his heal, which then began to bleed a bit. Once this came to the attention of the nursing staff, all educational programming was canceled for that student indefinitely into the future till the blister healed. After all, you couldn't expect the poor child who has already experienced so much to have to endure going to school.

This experience illustrates this perception. There are few demands for growth, no "risks" are taken, and the person is infantilized. This is a demeaning position for one to be in. Later in the development of the disability movement, one of the rallying cries was that people need to be afforded the "dignity of risk." That is, that if someone is constantly protected, he will never grow. Risk is not ambraced in a cavalier fashion, like life is some extreme sport, however, dignity does come with risk. It's like the first time your parents gave you the car keys. Risk was involved but it was a calculated risk, an informed risk which moved you to a new level of responsibility. Imagine if you were 25 and were still waiting for your parents to trust you with the car keys. You would feel angry and humiliated at the paternalistic protective environment you would have to endure.

Christians often will, with the best intentions, make comments which illustrate this perspective. We see a person with disability acting in an inappropriate fashion, and someone says, "He can't help the way he is." Well, nine times out of ten he probably can help the way he is, and needs to be told to "cut it the heck out!" I remember a great scene in the movie "Almost an Angel" where a guy in a wheel chair, upset about the fact that he is disabled, acts obnoxioulsy in a bar. A character played by Paul Hogan (Crocodile Dundee) tells him to quit acting like a jerk. The guy doesn't act right, so Paul Hogan sits in a chair, so he is at the guy's level, and punches him in the nose. That is so refreshing in that Hogan sees the man in the chair as a man, not as a disabled man, and treats him like a man.

Another comment sometimes made is that the person with disability is "suffering from his condition." Now there are people who actually suffer from disabling conditions, and I would in no way belittle that. However, to many persons with disability, their condition is the only experience they have in life, so they don't suffer from the loss of some capacity as a person who might have acquired a disability later in life would. If I project suffering on another person, I will either inappropriately see him as some sort of hero, or an object of pity. Neither of these characterizations apply to the average person born with a disability and do little to normalize them to the general society.

And then my personal unfavorite, "There but for the grace of God go I." So, the obvious conclusion is that you have experienced the grace of God, she didn't. The sentiment I understand. Yes, perhaps I should be grateful that my life experience is what it is. But I do little for the person with disability or myself for that matter in just celebrating that I am not disabled. A better reaction would be to celebrate the grace of God to you by doing something to help, befriend, support, or do something positive with the life you have received.

It is also interesting to contrast this statement, however, with the response which Paul relates when he asks God to take away his "thorn." Paul says that God relates to him that, "My grace is sufficient for you." If that is indeed the case, Paul might be able to say, "Here by the grace of God go I" as he carries his disability.

Somehow there is something which is not entirely negative about disability that we as people just don't appear to get.

McNair
(fcbu)

Deconstructing disability: role perceptions/menace

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 are from Wolfensberger.

2. The deviant as a menace
At the turn of the 18th to 19th century, a variety of things happened relative to persons with disability. The birth of institutions 50 years prior (a very positive thing at that time) caused parents to come forward with their children with disability so they might be served by these, "palaces . . . for the indigent and infirm, the chosen friends of our Lord Jesus Christ" (Edouard Seguin, 1854). People at the time began to wonder at all those who came forward. Then there was the urbanization of America where persons who were successful in an agrarian society were not in the cities. The IQ test identified even more with low IQ's. Although these people had always been in the community, they were somewhat hidden. However, this growth in the numbers of persons with disability appeard to be a real growth, an epidemic. At that time, the public was aroused to fear.

Persons with disability became associated with the social problems of the day (crime, degeneracy, poverty, etc.). and were vilified. The insitituions changed becoming places of segregation from the community, for protection of the community, and segregation of the sexes of those with disability, to stop their out of control reproduction.

It is important to note that there is often evil perceived in what is not understood. Evil has been perceived in persons with disability through the centuries. Earlier in this blog, we noted how the disciples of Christ asked who sinned that a particular child was born with disability. Jesus refutes this notion, however, sins of parents or of the disabled individuals themselves as the cause of disability is a wrong notion which lingers in the church today. If I feel that a person who is dysmorphic in appearance is that way as a result of sin/evil, to some degree I will treat that person as a menace.

The proof that these attitudes pervade can be seen when someone attempts to place a group home for adults with mental retardation in the community. Although these homes tend to be better maintained than the community average, fears of violence or sexual perversion on the part of the persons with mental retardation enrage the community and people attempt to keep the homes out. The thing that always amazes me, is how these perceptions of persons with disability as menace, are so close to the surface in society's thinking, and how quickly they are verbalized with little evidence to support them. People suspect that this is the way these different looking people are, and when someone mentions their irrational fear, they just pile on.

People truly do see evil in what they do not understand.

McNair
(fcbu)

Freaks (continued)

Five years before the release of the movie "Freaks," Supreme Court Justice Holmes stated the following in relation to imposed sterilization of persons with severe disability.

"We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, in order to prevent our being swamped with incompetents. It is better for the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. The principle that sustains compulsory vaccination is broad enough to cover the cutting of Fallopian tubes . . .Three generations of idiots are enough"(May 2, 1927).

This is just an example of the ignorance and fear that swirled around persons with disability at that time. The thinking was that they were breeding almost uncontrollably, and the only way to stop their growth in numbers was through their sterilization. But needless to day, sterilization would have had little or no effect as most persons with disability are born to nondisabled parents.

The above quote, which I shared last night in a Cal Baptist class I am teaching, illustrates how "Freaks" took people who were misunderstood and feared (when in reality they were just people, and in some cases cogntiviely disabled people) and via a horror movie biased an already discriminatory public towards them. A modern equivalent does not come to mind. But you have a somewhat helpless group, many of whom cannot even understand the most basic of things occurring around themselves, who are hated and feared for totally irrational reasons, and a film maker plays on those stereotypical attitudes by portraying them in a manner which supports the destructive perceptions. Now I am sure that as a result of the film people didn't go out and kill masses of disabled people (at least not in the US, as part of the eugenic movement it did occur in Germany, although I suspect the film had little to do with that), but it surely supported the attitudes under the surface which were governing the inappropriate treatment of those persons which continued on for another 30 years. Vestiges of those attitudes persist today.

McNair
(fcbu)

Deconstructing disability: role perceptions/subhuman animal

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 are from Wolfensberger.

1. The deviant as sub-human animal
Considering the perceptions of persons wtih disability in the past, particularly during the time when institutionalization was prevalent, persons with severe disability appeared to be being perceived as animals. Some of the evidence included abuse resistant environments, easily cleaned environments (even to the point of being hosed down), extensive soundproofing, objects placed out of reach, and many locked areas. The types of foods served seemed to imply a lack of discrimination in those who were eating them. Similarly, rooms were without windows or windows were highly placed and those living in the institutions would be unable to see out of them.

People spoke of keeping clients, rather than interacting with people. We see protected nurses' stations reminescent of a scene out of "One Flew Over the Cuckoo's Nest." Residents are not expected to learn or develop appreciably. People also spoke of "garden variety mental retardation" or even referred to a person who was profoundly disabled as a "vegetable."

There was the abrogation of human emotions or sensibilities such as shame, or modesty. Even as late as the 1970's severe aversive stimulation was used as a "training" technique, in particular with people with autism. The implication was that such severe aversives were necessary as the trainees had no feeling of pain or sensations were diminished in comparison with non disabled persons.

How do these perceptions persist today? I honestly think that the situation has improved for persons with more mild disability. However, this perception lingers in the perceptions of persons with more severe types of disability. I have been in situations where a young woman with profound retardation had her diaper changed by an open door during the passing period at a junior high school (that is, untill I shouted at the teacher to "Shut the door!"). I have been in other situations were private student information was posted on the wall of the classroom, or the students' privacy was not protected in other ways. I have heard teachers speak about students in negative ways in front of the students because "he can't understand what I am saying anyway."

One of the first things one should do in visiting an environment populated with persons with disability is to look carefully at that environment. The appearance of the environment will provide an indication of what those who are managing the environment think of those who populate it. You will learn whether those in charge think those in the environment are safe or dangerous, are in control or out of control, should be treated according to their age, are learning or are being maintained, are sick or healthy, are people or otherwise.

McNair
(fcbu)

Freaks

I had been reading the reviews of the release to DVD of a film made in 1932 entitled Freaks. The critics have acclaimed the picture as one which places people with physical disabilities (mostly) in a positive light in comparison to the evil of those who are not disabled. The first day that the DVD was available I bought one, but hadn't had the opportunity to watch it till last evening.

My first impression is as a historical piece which provides insight into perceptions of persons with disability at that time in American history. Many of the stereotypes are supported in the film.

I must state that the film by design is a horror film, and the disabled actors (at least those with normal intelligence, there were some who were severely cognitively disabled), must have been aware of how they were being portrayed. In spite of this, additional material provided on the DVD indicates only one actor appears to have felt the experience was a positive one. The film's disabled actors were largely carnival side show "performers" so the opportunity to appear in a film was likely seen as a positive carreer move. Several of the "little people" or actors with short stature disabilities appeared in other films including "The Wizard of Oz" and apparently had relativly successful careers.

In the additional material, each of the actors in the film, disabled or otherwise, are discussed briefly. It is noteworthy to consider the careers of the disabled actors. To the DVD's credit, side show performance is treated with some degree of respect, but the comparison made between a singer with an unusually good voice and a person with a particularly aberrant disability is a stretch. Still each actor's career was discussed, including films and other work performed as well as some information about their personal life.

It is true that in the film itself, the beautiful trapeze artist and the handsome strong man are the evil characters who attempt to take advantage of one of the "disabled" members of the side show. In the climactic scene the side show performers are going after the two. The side show performers are portrayed as a disabled gang on an evil hunt. Even the character with no arms or legs attempts to move across the muddy ground with a knife in his mouth. But the thing which really disturbed me, was the poor severely mentally handicapped fellow (a "performer" who most of his working life wore a dress), who was also crawling across the muddy ground with a knife in his mouth. This idea of persons with mental and other disability as being evil was actually pervasive in the early 1900's and even today might cause someone who doesn't know better to pause and wonder if such people are really capable of such violence .

At the time of its release, the film took an already devalued group who were feared for no reason other then that they were misunderstood (largely on the basis of appearance), and puts afinger on this irrational fear, not to squelch it, but rather to inflame it. The film was probably deserving of censorship in received at the time of its release (in hindsight) although the issues causing it to receive the thorough examination it did, were probably unrelated to my concerns.

It provides some insight as a historical piece, but not for the average viewer. One wonders how much actual change has occured in the minds of the regular viewers of the 1930's as compared with those today. Many stereotypes still persist, 72 years later.

McNair

Deconstructing disability: New feet

As I was driving into work today, I heard a commercial for a place called "New feet." Apparently at New feet, you can have a model of your foot made, and they then design foot supports that you can put into your shoes that according to their claims cure just about any back or leg problem you might have (by the way, the supports can fit in any shoe!). Anyway it brought me back once again to the notion of prefall versus postfall in relation to disability. Did feet naturally degrade over time before the fall? To ask in another way, did feet degrade (fallen arches, etc,) as a result of the fall, or were they degradable prior to the fall. This is important as it once again gives an indication of how disability fits into the scheme of God's creative design. Would people have foot problems prior to the fall or did our feet undergo a change as a result of the fall.

It is a principle that creation is degrading, as the Bible says, it's groaning.
"For the earnest expectation of the creation eagerly awaits the revelation of the sons of God. For the creation was not willingly subjected to vanity, but through Him subjecting it, on hope: that also the creation will be freed from the slavery of corruption to the freedom of the glory of the children of God. For we know that all the creation groans together and travails together until now. And not only so, but also we ourselves having the firstfruit of the Spirit, also we ourselves groan within ourselves, eagerly expecting adoption, the redemption of our body. . ." (Romans 8: 19-23). Clearly the degredation of all creation could include the degredation of our bodies in the form of genetic changes, engineered obsolesence, etc. The degredation of of our bodies could include aspects of physical degredation, the kinds of things which could use "new feet." Yet at the same time we must factor in the body's built in means of correcting the results of infection and injury. These processes might have been the gift of God to deal with bodily degredation and injury at the time of the fall, or might reflect the creation prior to the fall.

McNair
(fcbu)