Monday, November 29, 2004
"3. Our defense of life and rejection of the culture of death requires that we acknowledge the dignity and positive contributions of our brothers and sisters with disabilities. We unequivocally oppose negative attitudes toward disability which often lead to abortion, medical rationing, and euthanasia."
The notion of a culture of death has been well described by Dr. Wolf Wolfensberger. He uses the term "deathmaking" to refer to a wide variety of programs, positions, laws which would in total contribute to the Bishops' notion of a culture of death. I will go into Wolfensberger's notion of deathmaking at another time. The defense against the culture of death, I believe, does begin with recognizing that there is such a culture in our society. The culture of death can be related to actual physical death, or perhaps more commonly more of a "social death" in which a person with disability is relegated to life situations different from the mainstream but common to many of those with disability. Perhaps a defense of life is made when we acknowledge the diginity and positive contributions of persons with disabilities, however, I always wonder about who those to whom such a defense must be made, are. Are they even convinceable? On what basis would they see persons with disabilities as anything other than worthy of dignity? There is an evil here which must be labeled for what it is.
The notion of positive contributions once again gets back to my last entry about this statement. Somehow, we need to see positive contributions, abilities, in persons with disability in order to make the case for their lives. We need to see abilities, apparently on some scale of worth, which will move the balance of the scale toward the defense of life and the rejection of the culture of death. Honestly, I refuse to play that game because of the evil behind it which requires one to prove someone's worth. I will not argue about someone's worth. I am given a glimpse into the soul of the person I am speaking to, when I hear that they feel worth must somehow be proven. Of course those who would challenge the worth of another assume they themselves have worth.
I too, unequivocally oppose negative attitudes toward persons with disability, in particular those which lead to abortion and other forms of death making (I do share the negativity persons with disability often have toward their own disability: I would prefer that persons with cerebral palsy, for example, not have cerebral palsy). However, there are other forms of negative attitudes which don't directly lead to death which should also be condemned.
I never cease to be amazed at the negativity I see in church people. An instance arose in my own church a couple of weekends ago. Someone who is a wonderful man of God made a decision affecting adults with disability in a very discriminatory fashion, and probably never even saw what he did as being discriminatory. Somehow, he feared the impression of others in the church, in terms of turning them away, or limiting the spiritual experience he was attempting to develop. I would respond by asking, "How can you have an experience with God, when you begin the experience by excluding persons whom God loves on the basis of their disability?" Yet somehow, this seemed logical to him.
I appreciate the Bishops' strong statement in defense of life, however, we must be careful to avoid situations where even our participation in the discussion somehow provides support for those who would detract from the humanity of persons with disability.
Friday, November 26, 2004
- fear of the disability being contagious
- fear of the unpredictable nature of the social interactions
- fear that the person with disability might strike out in some violent fashion, particularly toward one's children
- fear of being left alone with the disabled person and "not knowing what to do"
- fear of the entire notion of having a disabled child
Others might also be imagined. Each of these fears are irrational in their own way, yet we allow them to persist and allow them to guide our interactions with persons with disability. The best way to dispell such fears is through direct interactions with persons with disability. Hopefully, familiarity will breed acceptance.
Wednesday, November 24, 2004
Anyway, as a speaker, I sometimes find that I get insights in preparing presentations to groups, and even get further insights in doing the actual presentation. Yesterday two ideas came up.
The first is that in the early days of the special education movement which led up to laws giving persons with disability the right to a public school education (50's, 60's and early 70's) we sometimes hear about groups of parents renting churches as places to have parent run schools. The question is whether these schools really proliferated in the United States, and if so, once the federal law came into place such that these schools were no longer "necessary" where did the kids with disability just go to the public schools, and what was the churches' response? I wonder whether many of these schools were actually Christian special education schools or whether it was simply a space renting situation. If it was the latter, which in hindsight it appears it may have been, we as Christians really missed an incredible opportunity. It could be, however, that there were not as many of these church rented, parent run schools as thought.
The second idea is that the vision I share with many others, a vision of the church being open to persons with all types of disability, is not necessarily the church's vision. So a future of openness to persons with disability is a future that may not even be on the church's radar screen. This implies that our first goal needs to be to get that notion into the minds of churches and then the second, to work to make that vision for a future of openness a reality. This is very basic stuff, but it is the starting point.
Tuesday, November 23, 2004
"2. Each person is created in God's image, yet there are variations in individual abilities. Positive recognition of these differences discourages discrimination and enhances the unity of the Body of Christ."
The notion of being created in God's image is an interesting one. It must imply something of a positive nature, I would assume. I never paid much attention to the notion when most of the people I interacted with were like me: healthy, apparently happy, got along with others, etc. But then I worked for a year in an institution for persons with profound disabilities. As I walked the halls of that institution, I passed people who literally were so physically disabled, they appeared to fluid lumps of humanity thrown to the ground that solidified to form something resembling a deflated ball. Many of them had accompanying severe cognitive disability to go along with their physical disabilities. I was involved in sensory stimulation training, which I ultimately stopped doing as I felt I was more of an annoyance than a help (I mean imagine not being able to move or communicate, and then having someone rubbing ice on your hand, or a prickly brush across your skin, with the best intentions of course, in the name of stimulating you). Anyway, I looked on those individuals and tried to reconcile the notion that they were created in the image of God with any past ideas I might have had about the concept. It was obvious to me that the image of God is not intellect, it is not physical health, or even as I once thought, social interactivity as none of these were present in these individuals. At this point in my life, it occurs that it might be that all people have a spirit. In the end it is more important from a leveling the field kind of perspective to note that we are all created in God's image. Such a perspective to my biased eyes raises the importance of those with profound disabilities and convicts my own vanity (it is easy for those without disability to see that we were created in God's image, I mean, c'mon, just look at us!).
Yes, it is also true that there are variations in our abilities. I am confident that the Bishops meant the best by this part of the statement, however, it can come off a bit patronizing. I suspect to them, it was simply the other shoe falling in relation to the image of God statement. It is true that we all have different abilities, but I really resist the "looking for the abilities in others" trap as abilities are linked often to worth. I say people have abilities because I am trying to assign them worth. Well I honestly have met people that I don't think have any abilities. And please don't tell me that their severe disability is actually the ability to bring out something in those around them. Variations in our abilities, sure, fine, however, worth is from God in being created in His image, and being loved by him. People get hung up on abilities and variations in abilities.
Positive recognition of ability differences may actually discourage discrimination and enhance the unity of the Body of Christ, but it can also be so much "whistling in the dark." I might actually have something to fear in the dark and whistling does little in light of that fact. Once again, positive recognition of ability differences benefits those with abilities. Recognition of differences in abilities if fine but it really isn't about abilities or the lack thereof. No, God says I have value so I have value. My ability to write a sentence or kick a ball, or smile in a friendly manner must be treated as irrelevancies in terms of worth. This is, I believe, where the Church is in a morass of confusion. It is not about what you can do for me, it is what can I do for you.
- And whoever desires to be first among you, let him be your servant;
- Even as the Son of Man did not come to be served, but to serve and give his life a ransom for many (Matthew 20:25)
Discrimination will go away when we stop having "peeing contests" over abilities and recognize that we are to serve one another. . . when we quit looking at appearances, when we quit feeling the need to affirm abilities because we are so darn fragile. The more needy, the more opportunity for service. You want to enhance unity? Lets serve one another and spend our lives for each other, for many.
Tuesday, November 16, 2004
"The church needs leaders, but it also needs brothers. I believe in authority, but I believe also in brotherly love. In Philadelphia they respected authority, for they kept the Lord's word and did not deny his name. But philadelphia in Greek means 'brotherly kindness.' It was to these caring brothers and sisters that the door was opened. Let them set out to serve him together and not wait for the specialists; then we shall begin to see what the Church's service really is."
After the excuse of no money, the next most common excuse for a lack of involvement with persons with disability is "I don't have any training." But as Nee says, "serve him together and not wait for the specialists." This is not to demean specialists. I have dedicated my life to the training of special education specialists and there is much that such specialists can learn. However, don't confuse being a specialist with being a willing servant. No one is asking the average church member to develop behavior intervention plans, or teach adults with cognitive disaiblities to read, or how to develop language in those who have no language. But it is reasonable to expect them to carry on a conversation, to take someone out to lunch, etc.
In that passage in Revelation it also says, "I will make those of the synagogue of Satan, who claim to be Jews though they are not, but are liars - I will make them come and fall down at your feet and acknowledge that I have loved you" (Rev 3:9). Now I am not saying that the church is the house of Satan or that people with disbilities are the ones about whom the Lord earliers says"I know that you have little strength," however, something about the statement "I will make them come and fall down at your feet and acknowledge that I have loved you" really resonates with me.
I met a man today who along with his wife is convinced that his church refused to put a birth announcement about his disabled child in the church bulletin because the child was disabled. Elsewhere in this blog I have spoken of other situations whereby persons with disabilities or their families were ostracized by churches or church members or pastors. Too often we treat persons with disability as if we believe God does not love them. By our words or actions we say to them, "God does not love you." But before the Lord has to put me in a position where I am made to fall at their feet and acknowledge that God loves them, I want to do it of my own accord as I believe that is the heart of God.
Friday, November 12, 2004
Be A Hero
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
Do they look up to you because your words are gentle and you care or are you
pompous and just not fair?
Don't stare or make fun - make them feel they are number 1!
My aunt and uncle strongly believe, that we are all equal in God's eyes, no
matter the ability, shape, color or size.
Teaching and encouraging mentally disabled is what they do.
for this they are heroes - one of a kind,
the very best you can find !
These disabled adults get to live a significantly better life,
because Kathi and Jeff, have chosen to help them through their
Be a hero in Someone's life.
1. We are a single flock under the care of a single shepherd. There can be no separate Church for persons with disabilities.
Sometimes when someone writes something such as the above, they are either responding to what they have observed, or are firing a preemptive strike. The above seems to be a bit of both. The latter following from the former.
A single flock under the care of a single shepherd implies we are all the same animal, all the same type. We are all sheep, er, I mean people. The single shepherd is Jesus. Now can you as a shepherd imagine hearing one of your sheep saying, "Fluffy is not like the rest of us and so we don't want him in our herd." As a shepherd you would probably say, "Wow, I didn't know sheep could talk." You would then say, "Shut up and get back with the rest of them, and I won't hear anything else about who is or who isn't a part of my herd." Interestingly, when an animal is rejected by its mother, like in the case of a litter of pups, the caretaker suddenly takes a special interest in the one rejected. The pups look at each other and see differences. The caretaker perhaps sees differences in appearances, but sees the pups as basically all the same. They are each a part of the litter.
The latter part of the statement says there can be no separate church for persons with disabilities. If there were a separate church for persons with disabilities, the question would be why would there be one, why would it be needed? I know of separate churches in the United States, and I honestly believe that those in leadership of those churches have a tremendous heart for persons with disability, and want to both meet their needs in a "culturally" relevant manner, and perhaps protect them from those who are not disabled. There are many problems with this perspective, however.
First of all persons with diability, particularly cognitive disability, aren't of a different culture, they are the same culturally as the rest of us. If they have developed any different form of experience, it is an experience of rejection, they are those who have been rejected. It is totally against Christian principles to say to a group of rejected people, "Hey all you rejected people, lets get together and form a church of the rejected people," at least as it relates to disability. Yes there are those who have done such things among groups like the untouchable class in India, however, that is an entirely different matter. Those people have developed to the point of having a distinct culture. You are born into that caste and as a result experience the same culture as your family etc. Now this doesn't dismiss the fact that such discrimination is wrong and should be fought, however, the situation is different.
People with disabilities are born into virtually any culture and experience some degree of rejection from that culture. So they don't really form a separate sub culture, they have experiences similar to others also experiencing disability. They group with these others not through any cultural affinity (perhaps like the deaf who have a different language in common) but because they have been relegated to the same stations in society, the same communities or parts of communities due to their near or actual poverty existence, the same agencies who provide various forms of assistance. These individuals were not necessarily born into these aspects they have come to experience in their lives, they have spiraled or gravitated toward these ends as a result of society and its constructions of disability.
Now if the church were some country club or golf membership, one might expect that there would be clubs for those who can afford them, clubs for those of importance, clubs for those with less money or influence and public clubs for those who for some reason are not able to attain the status of the higher clubs. The starting of separate churches for persons with disability is analogous to the "selective" clubs. If I can't get into the club I want to join, I will have to form my own club. Of if I cannot facilitate the integration of persons with disabilities into regular community churches, I will start a church for them. People of rejected status will generally not argue with a situation where they feel acceptance. Persons with cognitive disability will probably not recognize the philosophical issues of a separate church. But those of us who understand how things should be, who see the discrimination, must advocate for those who don't recognize the problems.
I know of a young man with down syndrome, about 14, who is still in the first grade Sunday school class. Now he is portrayed as being a "helper," however, he is much more like another first grade student. As a newcomer to that church, if I saw that young man in the first grade class, my response would be "What is wrong with him that he isn't with the other fourteen year olds?" My response would not be, "He is a good colorer." He doesn't belong in that class because it is not age appropriate for him. He belongs with his peers.
If I visit a church for persons with disability, my response is not, "Isn't it great that they have their own church!" My response is "Why aren't they with their peers?" If I attended a church local to that church, I would be ashamed that those persons with disability were so rejected, or felt so rejected that they had to start their own church. I would not tacitly accept that they were somehow different from me, of a different flock, ostensibly a different shepherd, such that they needed a different church.
You might respond, "Well what about denominationalism?" I would respond that persons with disability are born within denominations. They, at least by birth, are members of those denominations. If all the retarded people, by example, were Congregationalists, I would still argue that they should not be put in a separate Congregational church for the disabled people. But the fact that they aren't, that they represent all denominations, and that they need to form their own disabled church, indicts all of the denominations. They pat the people with disabilities on the back and say, "See you later" perhaps relieved that they no longer have to address the "problem" of disability.
But because we are one flock with one Shepherd, and should believe that we should all be one church, we need to do the required work to find persons with disability, bring them into our congregations, fight the rejection. Let the discriminators form the "Our Lady of those who Reject disabled People" church and they can deal with the Lord on the final day. Rather than rejecting those with disability, we should root out those who discriminate and reject them, find those who are unable to soften themselves and the environment to persons with disability and reject them.
My students at CBU have been interviewing their pastors about programs for persons with disability within their home churches. It has been interesting. A typical comment is, "We would welcome them if they came. We have elevators and are wheelchair accessible. We have disabled parking!" (Many of these things, by the way, were not there until required by law). But what they don't realize is, why would a group of people who have been rejected in the past suddenly go to a place which has rejected them? It would be like an all White church in the South in the 1960's saying, "We would welcome all the Black people if they came here." Well if you really wanted those people to come, you would need to go out and find them. You would need to try and convince them that they really were wanted there. To sit back and say "We would accept them, but none have come" is truly foolish in an age of discrimination. The fact that there are churches populated by persons with disability almost exclusively is a testimony to our failure.
Tuesday, November 09, 2004
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.
The document is titled,
"This moral framework is based upon Catholic documents and serves as a guide for contemplation and action. We hope that the reaffirmation of the following principles will assist the faithful in bringing the principles of justice and inclusion to the many new and evolving challenges confronted by persons with disabilities today.
1. We are a single flock under the care of a single shepherd. There can be no separate Church for persons with disabilities.
2. Each person is created in God's image, yet there are variations in individual abilities. Positive recognition of these differences discourages discrimination and enhances the unity of the Body of Christ.
3. Our defense of life and rejection of the culture of death requires that we acknowledge the dignity and positive contributions of our brothers and sisters with disabilities. We unequivocally oppose negative attitudes toward disability which often lead to abortion, medical rationing, and euthanasia.
4. Defense of the right to life implies the defense of all other rights which enable the individual with the disability to achieve the fullest measure of personal development of which he or she is capable. These include the right to equal opportunity in education, in employment, in housing, and in health care, as well as the right to free access to public accommodations, facilities and services.
5. Parish liturgical celebrations and catechetical programs should be accessible to persons with disabilities and open to their full, active and conscious participation, according to their capacity.
6. Since the parish is the door to participation in the Christian experience, it is the responsibility of both pastors and laity to assure that those doors are always open. Costs must never be the controlling consideration limiting the welcome offered to those among us with disabilities, since provision of access to religious functions is a pastoral duty.
7. We must recognize and appreciate the contribution persons with disabilities can make to the Church's spiritual life, and encourage them to do the Lord's work in the world according to their God-given talents and capacity.
8. We welcome qualified individuals with disabilities to ordination, to consecrated life, and to full-time, professional service in the Church.
9. Often families are not prepared for the birth of a child with a disability or the development of impairments. Our pastoral response is to become informed about disabilities and to offer ongoing support to the family and welcome to the child.
10. Evangelization efforts are most effective when promoted by diocesan staff and parish committees which include persons with disabilities. Where no such evangelization efforts exist, we urge that they be developed.
We join the Holy Father in calling for actions which "ensure that the power of salvation may be shared by all" (John Paul II, Tertio Millennio Adveniente, n. 16). Furthermore, we encourage all Catholics to study the original U.S. bishops and Vatican documents from which these principles were drawn."
I found this a wonderful statement overall so I provided it here (with the weblink), but I will also go through the many points raised by this statement in future blogs. The U.S. Conference of Catholic Bishops website is searchable, and has much good information.
Friday, November 05, 2004
Social Support is "information" leading someone to believe
- He/she is cared for
- He/she is loved
- He/she is valued
- He/she is esteemed
- He/she belongs to a network of communication and mutual obligation
Cobb states that, this information fulfills social needs and protects from adverse consequences.
Robertson et al. (2004) observed that among persons with mental retardation (in particular) living in community group homes, 3-4% had a "neighbor" with out mental retardation. Overall, they had 3 or fewer persons in their social network (most often staff or family) and 10% had nobody.
I know I too can do much better in this area, but I provide an exhortation nonetheless.
If you were to ask me what a neighbor is (I hope you are not trying to justify yourself) I would refer you to Luke 10:29 and following where Jesus provides a good definition in the form of a parable. In case you are unfamiliar with the Bible, it is the story of the "Good Samaritan" which has become a part of culture, at least in America.
If you were to see someone lying along side of the road beat up and hurt, would you say, "I don't know what to do because I don't have any training" and then walk on? Of course not, you would do what you could do. Unfortunately, the most common excuse I have heard from Christian churches or Christian individuals as to why they aren't reaching out to persons with disability is "I don't have any training." Perhaps Jesus should have added that excuse in the story of the Good Samaritan. He might have said,
"But by coincidence, a certain priest was going on that road; and seeing him, he passed on the opposite side. A 20th century church member came upon the man and said to himself, 'I don't have any training, so it is not my responsibility to help this man' and continued on so he wouldn't miss The Simpsons. And in the same way, a Levite also being at the place, coming and seeing him, he passed on the opposite side."
At the NACSW conference, Jim Wallis (Call to renewal) spoke of an inner city worker who made the comment, "We are the people we have been waiting for" and spent herself working with persons in inner city Washington D.C.
Perhaps my altered version of the story of the Good Samaritan might be further changed in the following manner.
"But a certain traveling Samaritan came upon him, and seeing him, he was filled with pity, and said to himself, 'We are the people we have been waiting for. I am the person I have been waiting for.' And coming near, he bound up his wounds, pouring on oil and wine . . ."
If not you, who. If not now, when.
Tuesday, November 02, 2004
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 . . .