disabled Body of Christ

A student in one of my classes recently shared the passage from Corinthians about the Body of Christ. The passage states,

The eye cannot say to the hand, "I don't need you!" And the head cannot say to the feet, "I don't need you!" On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has combined the members of the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. Now, you are the body of Chirst and each one of you is a part of it (1 Corinthians 12:21-27).

We touched on this passage back on March 30th. However, thinking through the notion of the body again, and even the title of this weblog, it occurred to me that we are a disabled body. The Body of Christ is a disabled body. Why is that? I would argue it is because we have selectively not included or even have cut off parts of the body, people with disabilities who would desire to be participants in the Body of Christ. It is as if we as the Church (using the Body of Christ metaphor) are limping around without a foot, or are seeing with only one eye or are missing the fingers of one hand. In the same manner that a person might become used to a missing aspect of their anatomy, the Church has become used to functioning without all of the members of it's body. It would be interesting to try to determine whether there was a point in the life of the Church when we actually 'cut off' that part of the body, or whether it was in some way 'born' without all their body parts. To push the metaphor further, the Church might not know what it is to walk with two feet or see with both eyes or have a hand with all of the fingers intact. That is what I have alluded to in the past in this weblog regarding that we really don't know what the Church could be if we included all of those who would choose to participate. We have grown used to being a disabled Body of Christ, grown used to being an incomplete body.

Can you imagine cutting off your foot because it wasn't a priority to have it as a part of your body? Can you imagine thinking, "I will get by with one eye because it will be too expensive to try to live with two eyes." To me, that is what we as the Church are doing. We are by choice deciding to be a disabled Body of Christ that does not include all of the parts.

McNair
(fcbu)

Complicity: the state of being an accomplice, as in a wrongdoing

That is the way The American Heritage Dictionary of the English Language defines the word complicity. In atrocities, in discriminations, in poor treatment of the past the word might be used to describe the church. We look back on those times of complicity in the past and wonder how the church could have been so blind as to have missed the great evil, the significant injustice it was participating in at the time.

We congratulate ourselves at the fact that "we would not have let that evil happen!"
I have often wondered what the blindspot of the church is today. What is the evil we are overlooking which we might stand up against? I think I might have the answer.

As I described in the last blog entry, there is great excitement that doctors may now be able to identify up to 90% of persons with down syndrome prenatally, and do it earlier. They claim this will save mothers the embarassment of being detected as pregnant or the psychological dissonance of having felt the first kicks of the baby before killing it. Church people, leaders included, are often so oblivious about who persons with down syndrome are that they cannot even engage in a discussion. As a result, they mourn the birth of a child with down syndrome in the same manner as someone without knowledge. Down syndrome is an unknown to them, though it needn't be, so they fear it, perhaps even fear those with the disability. But if those people were in churches, we might not only loose our fear, we might learn to see them as a blessing. I can tell you that I do!

I am not the parent of such a person although I would not fear being such a parent. I don't know how many people with down syndrome I have known, maybe 50, not a lot of people but I certainly don't fear them or their differences. I have actually come to love them and am drawn to them. They are sweet, decent people who enjoy life. They will rejoice or mourn with you with heartfelt empathy. They will go to school, maybe get a job, and live on their own or with limited support. You wouldn't have to try very hard to convince me that a great sense of humor is a characteristic of the syndrome. However, we, the church, fear what we don't understand, and are too damned lazy to find out what it is that we fear. If we did take the time, our perspectives would change.

The degree to which the church has not participated in dispelling falsehoods and telling the truth,
the degree to which the church stigmatizes and excludes people from the typical programs of the church,
the degree to which the church says that such people are not a priority for ministry to the point of putting it into their budgets,
the degree to which the church doesn't go out of its way to bring people with down syndrome into its fellowship,
the degree to which national church leaders are not speaking out against the evil of prenatal diagnosis and abortion of children with down syndrome,
is the degree to which we are complicit in this evil.
We are complicit in this evil.

The good news is that God is a forgiving God. He is forgiving if we denounce our complicity and repent. It starts with you (as trite as it sounds).

McNair (fcbu)

Down Syndrome Genocide

In a fascinating article, the National Review discusses an article in the Washington Post entitled, "Down Syndrome Now Detectable In 1st Trimester: Earlier Diagnosis Allows More Time for Decisions." Couching the issue of prenatal diagnosis and abortion as a women's health issue, the article states, "This is a big deal for women. It's going to have a big impact on care for women, not just in the United States but throughout the world." In a crazy example of doublespeak, the genocide of persons with down syndrome is a solution that is going to have "a big impact on care for women." This is not the genocide of an entire class of people, having a particular characteristic, which the Washington Post article didn't even attempt to overstate, "The syndrome results when a baby has three, rather than two, copies of the 21st chromosome, causing distinctive physical features, developmental problems and an increased risk of a variety of health problems that usually shorten the child's life span." The taking of down syndrome life is so prevalent, that euphemism (the substitution of an inoffensive term for one considered offensively explicit) in terms of describing who persons with down syndrome are is unnecessary. We are taking the life of a whole class of people because they have, "distinctive physical features," "developmental problems," and an "increased risk for a variety of health problems." Step back for a moment and think about this. If this doesn't cause you great concern, it should. People with down syndrome are some of the nicest people you will ever meet. But we choose to kill them, to wipe them out in the name of a "big impact on care for women." It is sick.

In response to this article, the National Review online posted its own editorial entitled, "Defining Life Down: Are we okay with eliminating a class of humans?" This article does a pretty good job in defining the issues and confronting us with the reality of the situation, we are "eliminating a class of humans."

Through training I have received from the Syracuse University Training Institute or Human Service Planning, Leadership and Change Agentry I have become sensitized to the issues. We are on a fast track to increased devaluation and termination of the lives of persons with disabilities. But my real question is, "What about the church?"

We, the Christian Church, are embracing the sins of the culture in direct opposition to the obvious and "most central themes of the Scriptures" (as Jim Wallis states). "Social location often determines biblical interpretation (also Jim Wallis). Our social location is anywhere where people with disabilities aren't. No wonder we think we can exclude them with impunity in the face of God's commands.

McNair
(fcbu)

Pride sucks or "I am better than you!"

I have been thinking a lot about pride as it relates to a variety of areas in my life, but particularly in relation to persons with disability.

If I were honest with myself, I think I would say that I believe I am better than my cognitively disabled friends. Its shameful to admit that, but I believe it is true. I am smarter than most, I am physically better off than most, I am wealthier than most, I have more opportunities (which of course I feel I deserve because of my efforts, my hard work), and on and on. The only thing which in any way reigns in my self-absorbing pride is the fact that God tells me that I am not better than anyone else. God tells me that we are all equal. In fact, the fact that I believe I am better, may make me worse than many others, particularly those I feel I am better than.

But I don't think that my problem is restricted to me (unfortunately). I honestly believe that in their heart of hearts, most of those who attend a church and call themselves Christians hold the same perspective as I do about how I/we, rank in relation to those among us who are disabled. I/we, like to say that we are all equal at the foot of the cross, but I (for example) have a Ph.D. and many of my friends are cognitively disabled, so obviously that can't be true. I/we say that we want to evangelize the world, however, I/we won't go out of our way to bring a disabled person to church so that can't be true. I mean, either I don't think the disabled person is worth my time, worth my effort to be picked up (because I am too busy to pick him up, or I have plans after church, or something else related to me and my importance) or I honestly do think they are my equal or perhaps even my better and do go out of my way to pick them up.

On several or more occasions the NT states that salvation is a gift, "so that no one can boast." So I/we don't boast about my having access to the most important thing, the point of life, because it is a gift, but I/we am quick to boast (although through socialization, not out loud) about all the other things I/we am able to do, which are of course, once again based upon my/our own efforts. I boast by my actions or by my inaction. I boast by my unwillingness which is only unwillingness because of the pride I have which makes me feel that I have more choices than I probably actually would have if I weren't so full of pride. One might think these other things that seem so important, are the most important thing the way I/we tend to rate these other things in importance by my/our behavior. The most important point in life is free, it is a gift so that no one can boast, but I/we exclude people on the basis of things which are not important. I/we don't brag about my/our salvation because it is a gift. But my intellect, my behavior, my physical stamina, my health, my good looks (if I had them) are of course not a gift, so those things can be the basis of differentiation amongst people.

I see myself through such a strange perspective. If I see God through a glass darkly, I see myself through a brick wall. We chuckle at the pride of others when we see it, because we see others the way they really are as compared to the way they think they are, we think. We also think we see ourselves clearly. I think that if it weren't for God in his mercy protecting me from seeing myself as I really am, I would be stymied to the point of being totally incapacitated by my pride, my sin, my self-centeredness my total disregard of God's purposes. But instead, he allows me to live on in some fairyland of totally unsupportable ideas of who I am. Particularly who I am in comparison to others around me, and particularly in comparison to those who I see as below me, not worthy of my time or effort. Those who are "not a priority for ministry at this time," as I have heard too many times from Christian church leadership. What does it mean if a person or a group of persons is not a priority for ministry at this time? It seems to obviously imply that I, in my pride, can determine who is worth the effort (see Sept 28 entry), and unfortunately, for too long persons with cogntive disabilities have not been worth my/our effort.

Can you see how this is a problem of pride? Pride in individuals like me and pride in the church as a whole?

But there is something that I can boast about with total confidence. That is that God loves me, the way I am, full of myself and my importance. But God loves my friend with disabilities the way he is, full of himself and full of his importance. I wish I loved my friend like God loves me and my friend the same. I wish I believed in the importance of my friend with disablities like God believes in the importance of me and my friend the same. I wish I could be willing to give my life for my friend with disabilities like God gave his life for me and my friend the same. I wish my behavior reflected the principles of equality that I say I believe in. I wish my behavior reflected the importance of all people before the cross the way that I say I believe in the importance of all people. I wish my thoughts about myself and my friends with disabilities reflected the thoughts of God about me and my friends with disabilities being both the same.


McNair
(fcbu)

Isaiah 53: 2-3, 4

A student in one of my classes at California Baptist University, shared this verse in reference to persons with disabilities. I may be the only one, but I hadn't thought of how Christ's experience is so similar to that of those with disability. Isaiah writes,

He had no beauty or majesty to attract us to him, nothing in his appearance that we should desire him. He was despised and rejected by men, a man of sorrows, and familiar with suffering. Like one from whom men hide their faces he was despised, and we esteemed him not...we considered him stricken by God, smitten by him and aflicted.

A very interesting characterization which could easily describe many persons with disabilities. Christ understands them.

McNair

Prayer as a leveler

The Light and Power Company at Trinity Church in Redlands, California recently hosted an all church prayer meeting. The meeting was sparsely attended by around 30 people, but it was a great time.

In preparing for the event, it occurred to me that prayer would be a great leveler of persons within the church. God is not honored by our "much words" and all prayers are pretty much equal. For me to go on and on about the surgeon's training and hands and whatever else comes to mind does not make my prayer any more effective than that of someone who simply says, "Help Sally get better." At the same time, however, the "childlike" faith of persons with cognitive disability may cause a qualitative difference between my and their prayers. My intellect often fills me with doubt, whereas their limited intellect allows them often to pray doubt free.

Please consider instituting a prayer session sponsored by the persons with disabilities in your church. It gives teeth to the lesson that we really are all equal at the foot of the cross. It also should raise the esteem of persons with cognitive disability in the eyes of other members of the church. There are people who will literally not be prayed for if not for the prayers of persons with disabilities, with cognitive disabilities. This is very powerful.

McNair
(fcbu)

Rob Bell's Velvet Elvis

Independent of you might think of the "emerging church" movement, there are some interesting comments being made by those in one way or another who are involved in that movement. For example, Rob Bell (pastor of Mars Hill Church in Grand Rapids Michigan, an amazing church which I had the opportunity to visit a week ago with a dear friend, Dan Morton) in his book Velvet Elvis, wrote the following:

If the gospel isn't good news for everybody, then it isn't good news for anybody.

And this is because the most powerful things happen when the church surrenders its desire to convert people and convince them to join. It is when the church gives itself away in radical acts of service and compassion, expecting nothing in return, that the way of Jesus is most vividly put on display. To do this, the church must stop thinking about everybody primarily in categories of in or out, saved or not, believer or nonbeliever. Besides the fact that these terms are offensive to those who are the 'un' and 'non', they work against Jesus' teachings about how we are to treat each other. Jesus commanded us to love our neighbor, and our neighbor can be anybody. We are all created in the image of God, and we are all sacred, valuable creations of God. Everybody matters. To treat people differently based on who believes is to fail to respect the image of God in everyone. As the book of James says, 'God shows no favoritism.' So we don't either.

This is a controversial statement no doubt, but the point of the church surrendering itself to radical acts of service and compassion, expecting nothing in return is something we have lost to a significant degree. Yes there are pockets of radical service, however, we as an entire church body could hardly be characterized as being involved in radical acts of service, nor could we as individual members of churches be characterized as involved in radical acts of service (I count myself among these individuals).

But what is the example of our Lord? Somehow, I need to make the radical acts of service more important than the probably thousands of hours I spend with my children or on my own in sports activities, for example. If we are doing anything radically, we are missing the example of Christ in a radical manner.

McNair
(fcbu)

Nicholas Wolterstorff on Matthew 25

Dr. Nicholas Wolterstorff provided the Alan Keith Lucas lecture at the recent NACSW ( North American Association of Christians in Social Work ). He spent a significant amount of the lecture discussing the Matthew 25 scripture regarding judgement: the separation of the sheep and the goats. He made the point that the translations which have predominated over the years may be in error in translating the word dikaios as "the righteous" rather than as "the just" or "the just ones". No doubt this distinction will be dealt with in depth in the book on justice which he has sent off for publication. However, it is an interesting distinction. So to fail to do justice to the "least of these" is to fail to do justice to Jesus himself.

One of the primary points I think he made was that justice implies the worth in another. I strive to facilitate justice for another for reasons unrelated to myself (my righteousness) and more related to the desire for all people to live under just conditions. I go beyond just aiding victims to attacking victimizers.

He also made the comment that in the Beatitudes, that the translation should not be "Blessed are those who are persecuted for the sake of righteousness" but rather "Blessed are those who are persecuted for the sake of justice" or doing justice. He commented that those who are righteous aren't typically persecuted for doing righteous things. Rather those who do justice or are constantly advocating for justice can be quite annoying ie. the recipients of persecution.

He also talked about how the Bible uses the word "downtrodden," the implication being that they are being actively trodden down.

In summary, he said, attentiveness to justice means attentiveness to the worth of another. This is a fascinating take on a section of scripture often used in relation to persons with disabilities or mental retardation. The least of these deserve justice because of their worth. Their worth comes from their humanity, not their cognitive or other ability levels. Disability does not decrease worth and therefore does not diminish one's right to justice.

McNair

Disability transformation movement

I have recently been in contact with Dr. Don Grossnickle, a member of the Diocese of Chicago of the Catholic Church. In our discussions, he used the term, disability transformation movement in reference to the kinds of changes that he, I and others are attempting to make within the church. There is a great deal going on across the country in these areas. I have recently been able to participate in only a couple of these conferences.

We had the PreSummit on church and disability facilitated by Bill Gaventa, the force behind so many positive movements which have occured over the years relative to faith groups and disability. It was a marvelous meeting in Washington DC attended by many powerful groups (powerful in terms of the changes they are making in churches and the lives of persons with disabilities). I expect to see more from this group.

Then there was the "Through the roof" summit held by the Joni and Friends organization in Pasadena, CA. Once again, a gathering of some wonderful people who really have a vision for the future of the church and persons with disbility. Of course Joni was there, but also people like Dr. Jim Pierson, and someone who I think will be a significant player in this area in the future, Steve Bundy of Pasadena Nazarene church.

I just got back from the National Association of Christians in Social Work conference (nacsw.org) which also had rumblings of issues related to social justice. Dr. Nicolas Waltersdorf, the well-known Christian philosopher from Yale University, spoke about social-justice describing a way of translating the Matthew 25 chapter about sheep and goats in a different manner. We also placed an add from NACSPED (nacsped.com) calling on NACSW members to work in their own churches to open them up to persons with disabilties by volunteering themselves to develop such ministries.

So things are happening in the disability transformation movement. Should you know of other things happening across the country, please respond to this blog and let us know about the activities.

May God bless our efforts.
McNair

(fcbu)

Church's protective function

I recently had the opportunity to attend a training on the sanctity of life put on by the Training Institute for Human Service Planning, Leadership and Change Agenty at Syracuse University. The training was outstanding and was very eye opening on a variety of levels, however, one of the lessons to me was that I came away with an insight into the potential protective function of the Church in a variety of areas.

First in terms of advocating and looking out for the safety of persons with disabilities, whether it be from bad people in the community, or human services, or even a stay in the hospital. The presence of the a community member in those settings works wonders in terms of changing the perceptions of those around a person with disabilities.

Second in terms of the unborn. If people with disabilities were really enfolded into the local church, people would not be able to make the arguments they make to justify the killing of unborn babies. Quality of life (although it is largely a spurious argument) is believed as an argument by many. If it could be demonstrated that people who are involved in churches are happy and enfolded, it would go a long way to protect their lives before they were born. It would also go a long way in assisting parents to want to have a child with a disability if they are considering terminating the life of an unborn child. They would see an environment where they were supported which would translate to support for their own child.

Other areas might be envisioned as well. But to the degree that we as the Church are not including and supporting persons with disabilities is the degree to which we expose them to devaluing and even death. Go back and look at Ezekiel 34 again. Because we have not brought them in, we place them at risk.

McNair
(fcbu)

A movement of lay professionals

The desire to facilitate a movement of lay professionals is not necessarily an effort to indict the church, but rather for disability professionals to lead by example. In contrast to the way that individuals with disability are not represented in churches in a manner which reflects their numbers in the community, Christian special educators, Christian social workers, Christian rehabilitation counselors, are represented in the Church.

It is we who are in the know about persons with disabilities. Arguably, it is we who have dropped the ball, and not lived up to our responsibilities. As the Bible says, “From everyone who has been given much, much will be demanded; and from the one who has been entrusted with much, much more will be asked” (Luke 12:48). We who have been given much knowledge and significant experience with the disenfranchised in society, hold a special responsibility to recognize their absence in the Church and rectify that situation. We need to be doing the work of inviting them in, introducing them to our congregations, and as appropriate, developing programs for them. In the same manner as we might be critical of a person with financial abilities not coming to the aid of her church should it need financial guidance, we as human service workers should be held accountable. The Church is disobedient, but then it has been disobedient in this area for a long time. There have been pockets of incredible insight and programs that must delight the Heart of the Lord, but there is also incredible ignorance, uncaring and a lack of concern. The Church is disobedient because we have been disobedient.

Church leaders speak of all people being created in the image of God, of all souls being equal, of the value of every human life, but as we look around our congregations, we don’t see the diversity typical of the community represented in our congregations. Where are the nearly 20% of persons nationwide who are disabled? Where are the 10% of persons with “severe” disabilities? Where are the people with mental retardation? “These people honor me with their lips, but their hearts are far from me” (Matthew 15:8) might be a fair characterization of the church in reference to persons with disabilities.

Those of us who are attempting to change the Church face barriers from our pastors, barriers from our denominations, barriers from those who sit next to us in the congregation. But rather than trying to overcome barriers, we dismiss ourselves from our responsibility in the name of church/state separation, or the rules of our organizations relative to clients, or the ignorance of our congregational brothers and sisters or our pastor. Or we say that our training and our work with persons with disabilities is our job and our church life is our church life. Personally, I need to see the chapter and verse on that one. This cannot be something that our Lord would condone. Can we as believers say that we are unwilling to serve in a particular area, especially when that area is our area of strength, the area we are devoting our working life to? Can we as believers say that we are unwilling to serve, when partially due to our lack of service, the Church lives in disobedience?

We hear pastors, or children’s program leaders, or Christian school administrators tell us that programs are too expensive, or too time intensive, or require persons having a lot of training. How do we respond to these excuses for living in disobedience? The last question is the easiest to dispel for the disability professional. Simply say, “I have a lot of training and I will run your program.” However, the types of things that are required to open the Church really don’t take a tremendous amount of training. Are church programs for persons with disabilities too expensive? A survey of pastors of churches running such programs says they aren’t (Sanchez & McNair in preparation). A survey of people who attend Christian churches say they are not (McNair in preparation). As a professional in the field of special education, I would agree with both of these groups and say that such programs are not expensive. Well aren’t programs too time intensive? Well, service is time intensive, but programs for persons with disabilities aren’t any more or less intensive than other programs.

However, the toughest protestation to the initiation of a program for persons with disabilities is that “Its just not a priority right now.” So ala Matthew 25, church leaders indict themselves. That will be my response in the future should I ever hear that excuse again.

We, the experts, need to act like the experts we are. Imagine going to your pastor to correct his interpretation of the Greek on a particular biblical passage. My pastor wouldn’t take too kindly to my attempted correction, and he would be right to not listen to me as I have never studied Greek or Hebrew, or systematic theology. But he has never studied the education of persons with mental retardation, or behavior management or best practices in the delivery of human services. I am the one who needs to take the lead in this discussion. I should know enough about my Bible to tell her/him where to get off should she/he talk about such a ministry not being a priority (I don’t need Greek or Hebrew to do that). But I have to be the one to go forward on these issues.

I had a discussion with a pastor and a couple of his staff members once. At one point in the discussion, one of the people in attendance said, “Nobody stays up at night wondering how to teach people with mental retardation about the Bible.” I responded, “I do,” which was the absolute truth.

Special education professionals live disability, particularly special education classroom teachers. They do, because if they don’t, they will be eaten alive by their students, or the student’s parents, or their administrators among others. But that preoccupation with persons with disabilities and the types of services they require, needs to be carried over to the church setting so as described in Matthew 25, they can be obedient to God’s command there and elsewhere to minister to the least of these.

Pastors, you need to confront disability professionals with their responsibilities in the church. You need to bring people with disability into the Church and support the efforts of those who do the same. As leaders in the Church, you are disobedient yourselves, and are allowing those within your purview to be disobedient as well.

Did Christ see people with disability? Very often these people are also poor. Did Christ have any interest in the poor? We read the stories of the extent to which Jesus went to minister without considering the context or the effort on his part to get with these people. Jesus’ interactions with persons with disabilities are breath-taking, and they were intentional on his part. We trivialize these interactions when we use them simply as illustrations or metaphors of spiritual principles. These were real people confronted by a real God, and these confrontations with real people by a real God are ubiquitous in the New Testament.

So don’t miss the priority Christ gives to these people as an example for you as a church leader in terms of the priority you should give to these same individuals who are living in your midst today. If you say that these people are not a priority, you indict yourself and diminish the service of those who do work with the disenfranchised.

And professionals in disability, don't miss your responsibility to help a disobedient church to become obedient. If you, if we do not facilitate the inclusion of persons with disability into the church, who do we expect will? We are the experts.

McNair

Interfaith Disability Pre-Summit summary article

Rev. Bill Gaventa prepared this summary article for distribution about the wonderful Interfaith Disability Pre-Summit which was held just recently in Washington D.C. I provide it for your information. Bill also indicated that this article is "For Immediate Release: (Please feel free to adapt to your own publications, add information or perspectives, etc.)." Bill is once again to be congratulated for conceptualizing and pulling off this marvelous meeting.

McNair


Interfaith Disability Pre-Summit Draws Over 100 to Washington, D.C.

On Tuesday, September 20, more than 100 representatives from Protestant, Catholic, Jewish and public and private provider and advocacy organizations involved and interested in religious service and supports with people with developmental disabilities and their families met for a first ever interfaith summit at St. Margaret’s Episcopal Church in Washington, D.C. The gathering was a “Pre-Summit” because it occurred just before a first ever national summit between eleven national disability networks organized as the Alliance for Full Participation. (www.allianceforfullparticipation.org)

The Interfaith Summit involved the representatives from the National Council of Churches Committee on Disabilities, the AAMR Religion and Spirituality Division, the National Catholic Partnership on Disability, the National Apostolate for Inclusion Ministry, the Religion and Disability Program of the National Organization on Disability, Friendship Ministries, YACHAD (The National Jewish Council for Disabilities), the United Synagogue of Conservative Judaism, the Consortium of Special Educators in Central Agencies for Jewish Education, the National Association of Christians in Special Education, the Union for Reformed Judaism, the Jewish Reconstructionist Federation, and Lutheran networks including Bethesda Lutheran Homes and Services, Inc. and Mosaic, Inc.

The highlights of the Presummit included three presentations by national leaders in disability advocacy to the interfaith gathering. The first was Patricia Morrisey, Director of the Administration on Developmental Disabilities. The second was Chester Finn, the President of SABE (Self Advocates Becoming Empowered, Inc.). The third was Sue Swenson, the incoming Executive Director of The Arc. All of them were asked to address ways that faith communities and networks could address major needs and goals being discussed at the Alliance for Full Participation.

A second highlight was a presentation by Jeff McNair of the results of an Interfaith Survey conducted over the summer of 2005 designed to research the perspective of faith communities and networks on the issues and needs being addressed at the Alliance for Full Participation. More than 70 people and networks responded to the 10 page survey, leading to more than 150 pages of comments, ideas, and suggestions. The Executive Summary of the Survey can be downloaded from www.aamrreligion.org. (Or use your own website if you put it there) and the full results of all the responses can be viewed at to http://jeffmcnair.com/Presummitsurvey.htm.

A third highlight was the incredibly high energy in the meeting, and the networking between individuals and groups. That was assisted by a reception and shared dinner, with a celebration of the presentation of the Henri Nouwen Award by the AAMR Religion and Spirituality Division to Sara Simon, a pioneer in Jewish supports with people with developmental disabilities, and the first ever Jewish recipient of this award. Meditations led by Gerry Hendershot, Ginny Thornburgh, Sister Gabrielle Kowalski, James Vanderlaan, and Rabbi Matthew Simon closed the evening, along with written statements of commitment by more than 50 participants about what they would do with their experience in the pre-summit.

Without a doubt, though the highlight of the day was a poem composed and read by Nate Hajdu, a direct support professional who works with Charlie Swenson. Sue Swenson invited three of the direct support staff from Jubilee, Inc, a Mennonite-based organization in Maryland who supports her son, to come and talk about the ways that their faith shapes, and is shaped, by their work with people with developmental disabilities. All three were articulate and moving, but the poem “My Friend Charlie,” read by Nate Hajdu about the spiritual journey on which Charlie had led him was simply a profound, moving, and sacred moment. (The poem is attached.)

For more information about the Pre-Summit, please contact one of the following sponsoring partners:

• Bill Gaventa, AAMR Religion and Spirituality Division, and The Boggs Center on Developmental Disabilities.732-235-9304. bill.gaventa@umdnj.edu
• Jeff McNair, National Association for Christians in Special Education. jmcnair@calbaptist.edu
• Nella Uitvlugt, Friendship Ministries,1-888-866-8966, friendship@friendship.org
• Linda Larson, NCC Committee Coordinator, 763-300-6163. Lindjhl@aol.com,
• Jan Benton, National Catholic Partnership on Disability, 202-529-2933, 202-529-2934 (tty), jbenton@ncpd.org
• Barbara Lampe, National Apostolate for Inclusion Ministry, 1-800-736-1280. qnafim@aol.com
• Ginny Thornburgh, NOD Religion and Disability Program, 202-293-5960, religion@nod.org
• Sr. Gabrielle Kowalski, AAMR Religion and Spirituality Division President, 414-410-4109. gkowalski@stritch.edu
• Gerry Hendershot, Cornell University Institute for Policy Research, ghendershot@earthlink.net
• Jeffrey Lichtman and Jason Lieberman, YACHAD, National Jewish Council for Disabilities, (212) 613-8229. krackol@ou.org.
• Sara Simon, United Synagogue of Conservative Judaism, Consortium of Special Educators in Central Agencies for Jewish Education, and Jewish Reconstructionist Federation. srsimon@erols.com
• Rabbi Richard Address, Union for Reform Judaism, Rfaddress@aol.com
• Linda Ogden, Mosaic. 319.653.5192. cell: 319.461.3435 lynda.ogden@mosaicinfo.org
• Earl Bleke, Bethesda Lutheran Homes and Services, Inc. 920-206-4408, ebleke@blhs.org

Return on Investment

The following is a quote from the book Instruction of Students with Severe Disabilities by Martha Snell and Fredda Brown (Pearson, 2006).

Another misguided value system, called return on investment, places a high value on serving students who have a favorable, history and prognosis for being "fixed" - those likely to contribute the most, economically, to society. The return-on-investment approach fails to recognize the many noneconomic contributions made by people, including those with the most severe disabilities.

The return-on-investment value orientation is based on a curative mentality that sends negative messages to children with disabilities and their families. Imagine what it might be like to continually get the message, "You are not OK the way your are. In order to be OK, your disability has to be fixed and you need to be more like us (people without disabilities)." Increasingly, self-advocates are asking that their disabilities be viewed as a form of natural human diversity and that others' efforts be less about "fixing" a person's disabilities and more about accepting individuals for who they are and providing necessary and self-determined supports.

In addition, the return-on-investment approach tends to discriminate against individuals with the most severe disabilities. It seeks to justify the differential valuing of people and the services they recieve on the basis of the severity of their disability characteristics. Anytime schools sanction practices that imply that some students are more worthy of staff time and resources than other students, there is a serious problem. All children are worthy, although they have differing needs.

Note the final comment "Anytime school sanction practices that imply that some students are more worthy of staff time and resources than other students, there is a serious problem. All children are worthy, although they have differing needs." How does the church fare using this criteria? Are we a place that emphasizes a return-on-investment philosophy? I hope we aren't but I am afraid we are.

McNair (fcbu)

Useless Eaters

Useless Eaters is a powerful website developed by Dr. Mark Mostert of Regent University. The website provides detailed information about the systematic taking of lives of persons with disabilities in Nazi Germany. The presentation is powerful, professional and very moving. I learned a great deal that I was unaware of before visiting the website. I highly recommend the site to you. You can find it at the following link.
http://www.regent.edu/acad/schedu/uselesseaters/

McNair

Pre-Summit Executive Summary

The Pre-Summit was the idea of Rev. Bill Gaventa and was truly a memorable event. Bill compiled an executive summary for attendees which I provide for you at the following link.
http://jeffmcnair.com/presummitsurvey/executivesummary.doc

I will continue to keep you informed about activities/programs/research resulting from the Pre-Summit. It has the potential of being an historic event in ministry to and with persons with disability.

McNair
(fcbu)

Leadership in prayer

Last night we had a meeting of the leadership of our "Light and Power Co." program which seeks to integrate persons with disabilities into our local church. In the midst of the discussion of future activities, we got the idea of having L&P sponsor an all church evening of prayer. At the time it sounded like a good idea: give back to the church by praying for the needs of the church, opportunities for integration between persons with and without disability, good stuff. But the more I think through this idea, the better it seems to me.

One thing that persons with disability, particularly cognitive disability can do is pray. Their prayers are often short and to the point (John is going into the hospital for cancer surgery . . . "Oh Lord, please guide the hands of the surgeons and help them to be a blessing-blah-blah-blah" versus "God, please help John get better, Amen.") which can be a good example. Their prayers are heartfelt. We have one member of our group who cannot keep himself from crying nearly every time he prays. They oftentimes have bigtime faith. But the bottom line, is that their prayers are EQUAL to my or anyone elses prayers. SWEET! You don't need to be highly intelligent or have any special skills to be able to say a prayer. So their service is equal in every way to that of those in the church who do not experience disability.

Man do I love the level playing field we have before the Lord. As I have mentioned elsewhere in this blog,

BUT- God chose the foolish things of the world to shame the wise . . . He chose the lowly things of this world and the despised things - and the things that are not - to nullify the things that are, so that no one may boast before him. (1 Corinthians 1: 27-29)

We can set the standard for a life of prayer through the example of persons with cognitive disabilities. We for sure can raise the standard for the church through the prayer life of persons with disability. This is truly exciting.

So start this at your own church. The disabiled community has all the skill required to be the leaders of the church in prayer. Lets raise the bar and set the standard.

McNair
(fcbu)

Pre-Summit to the Alliance for Full Participation

I write this entry from my hotel room in Washington D.C. the morning of the Pre-Summit to the Alliance for Full Participation. The Pre-Summit was conceived of by the Rev. Bill Gaventa, a long time advocate of the religious/spiritual needs of persons with disabilities. He writes the following in the program guiding the day long activities entitled, "Where there is no vision the people perish (Proverbs 29:18):"

As participatns in the Pre-Summit and the Alliance for Full Participation, we hope that you will see and use this document as a means for further dialogue and collaboration with congregations, clergy, and faith-based organizations in your states and communities... Thank you for taking the time to read and digest this short report from a groundbreaking event. We hope it helps build a vision that is both "deep" and "wide," and one that will build bridges of partnership and collaboration between faith networks and public/private services and supports with people with developmental disabilities and their families.

When I return from Washington, I will put a link to the complete contents of the Pre-Summit program in this blog.
Please pray for our deliberations today.

McNair

Lausanne Conference White Paper

Dennis Kingsland of Joni and Friends, turned me on to this interesting white paper on ministry to persons with disability which came out of the 2005 Lausanne International Christian conference which was held in Thailand. The interest group on disability ministry was facilitated by Joni Eareckson Tada. Good discussion of theological issues/scripture as they relate to persons with disability and ministry to persons with disability. You can get a pdf version at the following address.
http://jeffmcnair.com/Lausanne2005DisabilityWhitePaper.pdf

Enjoy,
McNair

Interfaith Disability PreSummit

Next week there will be an Interfaith Disability PreSummit, held in Washington D.C. This is a "presummit" as it comes before the National Disability Summit which will occur towards the end of the week. I (along with Bill Gaventa and Nella Uitvlugt were privileged to be able to assist in the development and analysis of a survey to in some ways guide discussions with those at the Summit over ways in which the religious community can contribute to the development of supports for persons with disabilities. I would invite you to visit a website where the results of the survey are posted.

You can visit
http://jeffmcnair.com/Presummitsurvey.htm to see the raw open ended question data as well as some basic frequency analysis of the numerical data. We hope to digest this information further in the coming months.

(fcbu)
McNair

The Theological Voice of Wolf Wolfensberger 2

I have been reading The Theological Voice of Wolf Wolfensberger, which is a book of Dr. Wolfensberger's writings on disability from a theological perspective. Dr. Wolfensberger is renowned for his work in areas related to human rights, education and other issues impacting particularly persons with developmental disabilities. However, this book (edited by Bill Gaventa and David Coulter) is an absolute must read for persons interested in notions of mental retardation and disability from a theological perspective. The next few entries will interact with some of the thoughtful discussion provided in this volume.

In "An Attempt Toward a Theology of Social Integration of Devalued/Handicapped People" (a paper presented in 1978) Dr. Wolfensberger takes on the notion of segregation by whomever of a group deemed as different in some way. This principle has particular relevance to the church to the degree that it acts to segregate persons with various disabilities from the general congregation. The following comments are made about how segregation begins.

In truth the one single characteristic of a person, or of a group, that can override all other shared characteristics of people in being used as the justification of segregation can be utterly trivial. It is remarkable in itself that one single characteristic can be presumed to differentiate people so totally, i.e., in that this characteristic can override everything else, even thousands of other characteristics the segregtaors and the segregatees share. If we just contemplate this one little reality, we may be stunned by its magnitude, expecially when we consider that this one overriding characteristic can be something as minor as skin color, the shape of one's ears, left-handedness in Japan, or something of this nature. Even when the characteristic is not trivial, it pales in comparison to the massiveness of the shared characteristics...segregatory congregation also signals back to society that the one characteristic that the congregated people supposedly share with each other is more important than all the thousands of characteristics they share with the segregators.

Now there are times when some forms of segregation make a degree of sense because the point of segregation is relevant. For example, we wouldn't expect to see persons with cognitive disability studying medicine in medical schools. Their difference would be a point of relevant segregation from the field of medicine.

What, however, are the relevant characteristics for segregation from a local church?

1 Corinthians 1: 27 and following states,

But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. He chose the lowly things of this world and the despised things - and the things that are not - to nulify the things that are, so that no one may boast before him. It is because of him that you are in Christ Jesus, who has become for us wisdom from God - that is our righteousness, holiness and redemption.

Who has the Church chosen? What are the relevant characteristics that are so different from the rest of us that we see fit to exclude them from out midst? God chooses "the things that are not." Who do we choose?

McNair
(from cbu)

The Theological Voice of Wolf Wolfensberger 1

I have been reading The Theological Voice of Wolf Wolfensberger, which is a book of Dr. Wolfensberger's writings on disability from a theological perspective. Dr. Wolfensberger is renowned for his work in areas related to human rights, education and other issues impacting particularly persons with developmental disabilities. However, this book (edited by Bill Gaventa and David Coulter) is an absolute must read for persons interested in notions of mental retardation and disability from a theological perspective. The next few entries will interact with some of the thoughtful discussion provided in this volume.

In "The Prophetic Voice and Presence of Mentally Retarded People in the World Today" (a presentation made by Dr. Wolfensberger in 1976) the following statements (they really should be read in context) are made.

"So I asked myself, what are the prophetic signs which appear to be unique or very special to our day, which are very different from what they have been at other times. . . Where and how is the Spirit active today in a way that is different from the way it may have been in other eras?
As I posed these questions to myself over the past few years, I began to read both the signs of dysfunctionality and of prophecy in a different and clearer fashion, and I read one very, very powerful prophetic message, coming from mentally retarded people. For instance, I considered that it should not be unexpected if divine messages about the present patterning of offenses should come from people who, in their roles and identities, are exactly the opposite of what our era idolotrates. Who and what is the opposite? The opposite is a person who is not intellectual, not scientific, not technological, and not academic; who does simple instead of complex things; who cannot cope with complexity, and technology which passes him by; and who, possibly, is despised for lack of modernity and intellectuality. Is that not the retarded persons of our age?
But if it is, is there any evidence that God has thrust retarded people into a prophetic role? I submit to you that there is indeed . . .

The article goes on to list 10 signs to substantiate the possibility that persons with cognitive disability are indeed carrying a prophetic message.

-Mentally Retarded Persons are Becoming Much More Public and Visible
-Retarded People are Becoming Internationally Known
-Non-Handicapped and Handicapped Persons are Sharing Their Lives, Often Living Together
-Retarded Persons are Gentling Others
-The Prophetic Manifestation of the Presence of God via Retarded People
-Retarded People Speaking in Tongues
-Retarded People may Withstand Their Culture
-Retarded People May Be Parodying Intellectualism
-The Dance of Spiritual Joy
-Retarded People Are Beginning to Be Persecuted and Martyred

No doubt Dr. Wolfensberger's writing on this topic will cause you to think through, to consider his position. For each of the signs he describes the sign and how he has seen it evidenced. His perspective is very interesting.
Under the sign, "Retarded People are Beginning to be Persecuted and Martyred," he makes the statement,

"The logic is compelling: the world has always tried to put to death God's prophecy, and it is the nature of God's will that prophets must be prepared to be martyrs, and disproportionately they are. The moment retarded people in significant numbers become bearers of the word of God, the principalities and powers will converge upon them to fight and stifle that form of prophecy that is so specially powerful all because of its much more miraculous nature, and because in some ways, it goes beyond what any other type of prophecy has said before (my emphasis). . . we have never been told in systematic prophecy that human intellect is universally bankrupt, and that millennia of technological development is at an end."

There is a connection here, I believe, with our earlier discussions in this blog of down syndrome, prenatal diagnosis, etc. It is not unusual for persons with developmental disabilities, yes, mental retardation, to change those around them. Personally, I recognize a kind of a prophetic voice about the importance of love and caring and genuine friendship. These kinds of principles fly in the face of the calculations which are driven by technology . . . "Will this person have a good quality of life?" . . . "Is it cheaper to test infants for PKU, or just to deal with the disabilities which will result if we don't?" . . . "What do the percentages tell us about whether or not parents carrying a particular gene will produce a child with a disability?" . . . "Is is more cost effective to spend millions of dollars on political campaigns, or to provide housing subsidies to persons on fixed incomes?" . . . and so on.
And where is the moral compass in this situation? Where is the salt that gives the world its flavor? Where is the light on the hill?
Wolfensberger makes the claim that persons with mental retardation are prophets to the culture, to the church. You may not agree but it makes you think.

I am confident that Jesus would be hanging out with the unwelcomed people with mental retardation and other disabilities in the group homes and care facilities.

McNair

Who sinned?

I met briefly today with a friend of mine, who is a professor of Theology. He related the story of a woman who came to him and told of how the pastor of her church said that the reason that her son was born blind was because of her sin. My friend was amazed at the story: that someone would still be accused of sin for the birth of a child with disability, particularly in the light of scripture (I had told him of my experience in this area, but he could hardly believe me). But he also provided a great response. He said that the woman should have replied to the pastor, "Is your son blind as well?" That response that would provide a true understanding of sin, what it is, and what our condition is as members of a depraved generation. It also points to the fact that sin is overwhelmingly NOT the reason for disability.

McNair
(from cbu)

Lutheran Church Missouri Synod statement

The following is a statement passed by the Lutheran Church Missouri Synod at their 2004 convention.

To Facilitate Ministry with and to People with Disabilities
RESOLUTION 6-09
Overture 6-02 (CW, p. 245)
WHEREAS, Physical, mental, and emotional disabilities may significantly limit participation in worship,
fellowship, education, service, and outreach activities; and
WHEREAS, People with these disabilities are able to make positive contributions to the life of a parish;therefore be it Resolved, That the LCMS Board for Human Care Ministries address the following matters:
1. A mission statement for this ministry with and to people with disabilities;
2. A congregational self-assessment tool to assess the needs of people with disabilities;
3. Plans and guidelines to address physical and attitudinal barriers in churches;
4. Suggestions whereby people with disabilities can be involved in the life and ministry of a congregation;
and
5. Congregational outreach to people with disabilities to achieve participation in the life and ministry of the congregation.
Action: Adopted (10)
(After introduction by the committee, a request was made to move the question unanimously. The convention instead
closed debate, and the resolution was adopted as presented [Yes: 982; No: 18].)

This is a great general plan for the development of ministry for any church (I wonder who the 18 were who voted against this?). Churches who want to develop ministry in this area need-
a mission statement,
to do a self-assessment,
to look for physical and attitudinal barriers,
to look for avenues for involvement in life and ministry, and
outreach to achieve participation in the congregation.

You see, it really is quite simple. Obviously it is not easy to examine one's attitudes but if people with disabilities are thought of as just people, and the attitudes toward them examined as if they were attitudes toward any person, progress can be made.

McNair
(from cbu)

A moving prayer

This past week, a friend and hard worker who attends our Light and Power class at Trinity Church was honored for her last week in the class. She is moving across the country. Anyway, at one point we gathered around her, and as is our custom laid hands on her and prayed for God's blessing and direction. Amy, a member of our class contributed to the blessing by offering a beautiful prayer. After speaking of how we will miss Lella in a voice broken with emotion, she said ". . .and I pray that God will give you peace in your life at your new home." It was a lovely prayer with a heartfelt sentiment.

Lella had devoted a significant amount of time assisting Amy and her family over the past few months. In spite of her cognitive disability, Amy wanted to give back to Lella in some way and did through her beautiful prayer.

It made me once again wonder how many people would not be prayed for if persons with cognitive disability didn't pray for them. I am impressed with the steadfastness of these individuals in remembering to pray for people known to them. Remembering their parents and families and friends. Their righteous indignation over injustice when they become aware of it.

I will never forget a man named James who was an elderly adult with mental retardation. James was fiesty and let you know what you think. At one point in a lesson I was giving in class, I mentioned that several children had been abused by their parents. They had been locked in a closet for months fed through a slit in the door. Angrily but tentatively James rose to his feet and said, "I will not stand for that. I will not let that happen." Although powerless to do most things about the abuse of children, James used what he had, impressing those there that day with the absolute evil of the situation. He also used his voice to pray that such abuse would stop.

Do we really believe that all people are equal in the sight of God? Do we really believe that God hears our prayers, ALL of our prayers by ALL of us?

By the way, Amy has down syndrome. In a perfect world (see July 7th entry) her voice and therefore her prayers would not be heard as she would have been aborted to protect HER from a poor life quality.

"I will not stand for that. I will not let that happen."

McNair
(fcbu)

The Truman Show

I was watching the movie The Truman Show tonight. I have always found the movie very interesting. Anyway, one of the main characters in the movie,Kristoff, the guy who created the reality television program called "The Truman Show" makes the following statement.

We accept the reality of the world with which we're presented.

An interesting statement. In terms of the real world, I agree and I disagree with the statement.

I agree in that I don't think that I have abilities and deficits other than the ones I have come to know after nearly 50 years of being me (although I do think higher and lower of myself then I should at times). I also recognize that the world I live in is a dangerous place, and there is such a thing as evil. For me to think otherwise is a fantasy.

I also cannot project my life experience on another, or compare my life experience with another's and have any notion that how I view his life is how he will view his life. My life experience is reality to me in the same way that another's life experience is reality to him. I will at times look at others and imagine how they might feel about a particular life experience, but I really don't know the process they have gone through to understand their life and am therefore very limited in my understanding.

I disagree in that I don't have to accept the reality of the world with which I am presented if I have the fortitude to change it. The "reality of the world" for persons with disability, for example, does not reflect the reality of who they are. They may finally give in and submit themselves to the reality thrust upon them. They can also fight them with the assistance of others who also reject the reality of the presented world because it needs to be changed.

McNair

The Kallikak Family

I have been gradually collecting old and pivotal books in the field of special education. I recently purchased The Kallikak family: A study in the heredity of feeble-mindedness, by Henry H. Goddard. The book traces the offspring of one Martin Kallikak (not his real name) over many generations. Apparently Martin had a sexual encounter with a New Jersey barmaid during the revolutionary war, and then later married a "respectable" woman. The offspring of Martin and the two women are compared over time.

Published in 1912, the book embraces notions of eugenics as they relate to "morons" the term used for persons with mild to moderate learning disabilities at the time. It also predates World War 2, so we see eugenics as it relates to disability, without the memory or lessons of Nazi Germany in the background. Here are a few quotes from Goddard.

A great majority, however, having no such interested or capable relatives, become at once a direct burden upon society. These divide according to temperament into two groups. Those who are phlegmatic, sluggish, indolent, simply lie down and would starve to death, if some one did not help them. When they come to the attention of our charitable organizations, they are picked up and sent to the almshouse, if they cannot be made to work. The other type is of the nervous, excitable, irritable kind who try to make a living and not being able to do it by a fair day's work and honest wages, attempt to succeed through dishonest methods.

From all of this the one caution follows. At best, sterilization is not likely to be a final solution of this problem. We may, and indeed I believe must, use it as a help, as something that will contribute toward the solution, until we can get segregation thoroughly established.

In considering the question of care, segregation through colonization seems in the present state of our knowledge to be the ideal and perfectly satisfactory method. Sterilization may be accepted as a makeshift, as a help to solve this problem because the conditions have become so intolerable. But this must at present be regarded only as a makeshift and temporary, for before it can be extensively practiced, a great deal must be learned about the effects of the operation and about the laws of human inheritance.

I would like to think these types of attitudes do not still exist. We do have the backdrop of the horrors of the 1940's. But the attitudes which justify abortion of persons with down syndrome in the name of "quality of life" are at best misinformed and at worst evil.

McNair

Mark 7/Isaiah 29

This people honors me only with lip-service
while their hearts are far from me.
The worship they offer me is worthless,
the doctrines they teach are only human regulations.

That is how Jesus' quoting of a passage from Isaiah 29 is reported in the Jerusalem Bible. Jesus goes on to say, "You put aside the commandment of God to cling to human traditions. How ingeniously you get around the commmandment of God in order to preserve your own tradition."

I recently visited a church where they were celebrating work done with orphans in Africa. This church has been instrumental in building and supporting this orphanage. As the slides of beautiful African children were shown in the background, the comment was made, "We are all the same in God's sight. We need to care for these children because we are all the same in God's sight." I couldn't agree more. The work this church is doing is wonderful. They are making a great impact on the lives of children a half a world away.

But what about the people in need in their own back yard? As I looked around the congregation, I saw one man who appeared to have a form of cerebral palsy. But beyond that, he was the only person in the room that I could detect as having any form of disability.

It seems that we get around the commandment of God to preserve our own traditions. In this case, the tradition is to be involved in overseas ministry which is an ourstanding tradition. But the commandment of God says we should also touch our neighbor. Our traditions of overseas ministry may have given us the perspective of less responsibility at home, particularly towards underserved people in our community.

The work I observed that the church was doing with the African orphans was beautiful! But I still wondered why that church could not see the people with disability in their own community.

The traditions of the church really do need to be shaken up because they are getting around the commandment of God. All people are created in God's image and are loved by God. But the "difficult" ones are not in churches. Why are the supposedly easier people to serve the ones who are in church if we really do believe that the commandment of God is to love everyone in the same manner that He loves us. Why are the supposedly easier people to serve the only ones that I could really prove are created in God's image by their presence in a church? I must argue too, that persons with cognitive disabilities are not really harder to serve. Someday the church will discover that.

I am reminded of the passage in Matthew 23, where Jesus is putting the hammer down on the scribes and Pharisees. In regards to tithing, he says in vers 23, "These you should have practiced without neglecting the others." I don't think it is too far out of context to say that without negelcting the important work with African orphans, we should also be working to include persons with disabilities in our communities in our own churches.

You want to buck tradition? Start bringing the retarded people to church.

McNair

A movement of lay professionals

This past week I had the opportunity to meet a woman who was applying for a position at the university where I work. I asked her how she as a school psychologist at a large school district was able to integrate her faith with her professional position. She related a variety of things she was doing, but then spoke of how she started a support group for parents of persons with disabilties at her church. The group met about once a month and discussed successes and failures, resources and battles with various human service agencies. She also related that her church had begun to infuse special education best practices into the Sunday school classes for students with disabilities.

I walked away from that conversation feeling that what she is doing is exactly what professionals need to be doing at their local churches. We need to bring our expertise to the church, but not for the reason you might think. You see, I believe that
it does not take special training to be involved in disability ministry
it does not take special training to be involved in disability ministry
it does not take special training to be involved in disability ministry
it does not take special training to be involved in disability ministry

Now don't get me wrong. The training professionals receive is important and contributes a great deal to their understanding of persons with disabilty. I am a trainer of professionals for goodness sake. But, what the church needs more than anything else is to have professionals model how one is to act, how one is to include, how one is to love persons with disabilities. The key attribute that we bring to the church setting is not our special training, but our experience. We have learned to see past the minor social skill deficits. Just about anything a person with a cognitive disability could do, we have probably seen before and have learned to take in stride. It is this experience of being accepting to persons with disabilties that we bring to the situation. You see, we have learned that people wiht disabilities are just people, and because we understand that truth, we treat them like we would treat anyone else.

But that experience is huge. People will say that they can't do something because they don't have training, but what they really need is experience, because experience will ally their fears better than any training ever would. And how are they to get this experience? Well, if we as professionals would be proactive in bringing persons with various disabilities to church they would get the experience. They would also have the opportunity to see appropriate interactions with persons living on the friges of society modeled for them. Perhaps through our example, those on the fringe wouldn't be on the fringe anymore because our example would break down the stigma which put them on the fringes in the first place.

It is interesting that in churches we hear that God loves all people and that God sees all people the same, that God values all people the same and that we are created in the image of God. We hear that, but we don't always see it acted out in our midst. We as professionals who love and work with persons with disability can provide the example of what it looks like to act on the notion that God loves all people the same. We can provide the example of what it looks like to act on the principle that we are all created in the image of God. We can provide the example of what it looks like that God sees all people the same. We can provide the example of what it looks like that God values all people the same. We hear such statements made in church, but how often do we see such statements acted out within our midst. You know it is funny that when we do see the act of kindness toward a persons with mental retardation, or the pastor who takes social skill deficits in stride, we are like, taken aback. It is like for an instant we are not seeing through the glass darkly. The question is why are such interactions rare? Perhaps it is because the opportunities to do real acts of kindness towards people who are in need cannot occur if the people in need are not in the church.

WE ARE THE PROFESSIONALS!

It is we who need to make the church reflect the community. If you are a professional in aspects of disability and there are few if any persons with disabiltiy at your church, it is YOUR FAULT! You are not doing, not being all you should be in your church. When I see a lack of acceptance at my church, I immediately look at myself. How am I providing the example of how the church should be towards persons who have been traditionally excluded. I cannot expect a church which has literally centuries of exclusion to suddenly lead the way in change. To put it kindly, the "lack of priority" of disability ministry is an inbred part of the structures of the church it would seem. The excuses for a lack of involvement which are typically provided by those in leadership have worked for decades if not centuries.

BUT WE ARE THE PROFESSIONALS!

We are the ones who need to change the church. It is time for a lay movement of professionals to bring the church into obedience on issues related to reaching out to all its members with disability.

McNair

More on down syndrome

I have been thinking more about the down syndrome discussion in the last blog. Here are a few more thoughts.

With some forms of disability, the disability occurs after the person has lived without the disability for a period of time. So a person who has lived a normal life becomes injured in some way and as a result experiences disability. First of all, I think this form of disability needs to be separated from a disability like down syndrome, one that a person is born with.

With down syndrome, the life experience that the person has is not influenced by life without the disability in the same manner. That is, their experience is all they have known. Now society would approach a person with down syndrome saying,
"I am sorry you have a poor quality of life" or
"I am sorry that you are not as smart as I am" or
"I am sorry that things will be more difficult for you, in terms of learning" or
"I am sorry that society is discriminatory against you."

However, a person with down syndrome would potentially reply,
"Poor quality of life in comparison to what? This is the only life I know."
"I didn't realize you were smarter than me," or "aren't there people smarter than you?"
"This is the way I learn, are things more difficult for me?"
"Sometimes people are just mean, but sometimes they are nice."

However, the problem is that on the basis of the statements I made about quality of life, etc., I then make the decision that the life of a person with down syndrome is not worthy of living. Our society has convinced many that the best, the wisest thing to do when you are pregnant and meet certain criteria (advanced maternal age, elevated levels of a particular protein, etc.), is to have a prenatal diagnosis done so the presence of an extra #21 chromosome (the cause of down syndrome) can be detected, and the unborn baby aborted. I am pretty sure that it is considered malpractice for a doctor NOT to suggest prenatal diagnosis should the criteria for a higher chance of down syndrome be present.

Now for years, I have been aware of these procedures, and although my wife and I chose not to do prenatal diagnosis because abortion of any form was not an option for us, it suddenly struck me that the end desire for these procedures would be the eradication of persons with down syndrome from the world. In the same way we might say, "Thank goodness we have done away with polio in the United States" there are those who would say, "Thank goodness we have done away with down syndrome in the United States." That must be the goal of prenatal diagnosis and abortion of these individuals. In order to prevent this from happening, you as a pregnant woman/family must actually tell the doctor "No" in terms of doing prenatal diagnosis and potentially abortion. The assumptions in these interactions are you meet the criteria, you do the test, you have the abortion. That is the assumption.

But lets think about what down syndrome is. It is not something you get, like a disease or something. It is not something you experience as a result of some injury, or lack of oxygen during birth, or something. It is genetically who you are. Just like I am white and others are black or brown, it is genetically who you are. I cannot hope to be cured of my white skin color. The only way to prevent my birth as a person with white skin color is to abort me, as that skin color is a part of who I am. Down syndrome is a genetic part of who those persons are. So through abortion, I am not preventing mental retardation, I am wiping out people who have a particular genetic trait that is a part of who they are, simply because they have that trait and I think it is bad.

Now I have probably known over a hundred persons with down syndrome over the years. I have come to believe that their down syndrome is a characteristic of theirs much like my skin color is a characteristic of mine. My skin color impacts much which will happen to me throughout my life. In the United States, it may mean that I have an advantage over those with a different skin color. It affects how much sun I am able to take before I get burned. It has cultural repurcussions to me. But when you boil it down, it is only culturally that my skin color really has any relevance to me. The society around me will decide on the basis of somewhat random social constructions whether or not it is good or bad to have white skin. But outside of social constructions, my skin color is largely an irrevalent characteristic. Should society decide it is bad to have white skin, I will have trouble in my life for that reason. But in reality the decision that white skin is bad or good is not based on anything rational.

I believe the same thing about down syndrome. I know people with down syndrome who live at home with their families are are loved by them. I know others who have apartments or are supported to live in the community. I know others who have jobs. I know some who are in adult day care, or do not work. But for most, when you distill their life experience it is the same as mine. They have friends, they have a job, they live in a home or apartment, they are just people. Now because they will not go to college, or take longer to learn some things, or look different, society has stigmatized them, convincing many that they are something different, something other than human even, that there is rationality in the decision to prenatally diagnose and abort them. To me down syndrome is somewhat of an irrevalent characteristic. It is particularly irrelavent when one is making determinations of human worth.

For the millionth time, I heard someone at church say that we are all the same in God's eyes, we are all equal in God's eyes. You know I am sure the woman who said that yesterday meant it when she said it and I really believe it as well. But if it really true that we are all equal in God's eyes, why are we looking for unborn babies with down syndrome so we can abort them? They think they have a pretty good quality of life. God forbid that we put ourselves in the position of taking the lives of others because they don't meet our criteria for a good quality of life, particularly when most who are making that determination don't even know what their quality of life is.

McNair

"A More Perfect Society"

In the July 2005 Christianity Today, there is an editorial piece by Angela Beise entitled, "A More Perfect Society: Why I wouldn't want to live there." In the article, Ms. Beise describes an interaction with an itinerant teacher she used for her son with disabilities while she was living in France. She begins the article by stating that in France, the "the society in general isn't friendly to the disabled. In our area of Paris alone, there are 300 special needs children on a waiting list for a place in a school." She then goes on to state the following.

As she (the teacher) was leaving our house after a therapy session, she advised us to apply to a couple of schools that are specifically for children with Down syndrome, even though Michael does not have Down. Then she made the shocking statement, "Schools for Down children are starting to take children with other syndromes since Down is becoming so rare," she said. "Now that tests can tell so early in pregnancy that a baby has Down, few people are choosing to have them."

Amazing when our choices come home to roost. A world without people with down syndrome. I know a lot of people with that particular syndrome, and I pray that people like them will always be in the world. They are some of the kindest, most friendly people you could ever want to meet. But our world misunderstands who they are and in the name of "quality of life" chooses abortion. They are comparatively easy to be rid of as well. Not to say that abortion is easy, but the diagnoses which have become routine make an unborn child with down syndrome easy to identify.

And doctors are telling us that they should just be aborted or at least offering tests for down syndrome should the conditions be right (they are required by law to do so!) and another pregnancy attempted. Other groups who I refuse to even mention in this blog talk about choice in pregnancy. All I can say is this is evil. Can I be more blunt than to label the complete obliteration of persons with down syndrome from the world as nothing less than evil. One need only read about the history of doctor recommendations in relation to institutions for persons with mental retardation to recognize that they can be not only wrong, but contributors to outcomes which reflect the very worst that man is capable of.

As a medical student (I later flunked out of medical school) I took a class in genetics. The genetics professor was giving a lecture on down syndrome, as it is caused by having 3 copies of chromosome 21 instead of the typical 2 copies. In the discussion, he made the statement, "It is important to remember that people with down syndrome are people." For a moment I rejoiced at his statement. But then he followed it up with, "And some of them may actually develop a personality." One of the greatest things about persons with down syndrome is their wonderful personalities. I wondered how many people this guy actually knew with down syndrome to be able to make such a rediculous statement. But these are the kinds of people who are making recommendations to families about down syndrome in terms of prevention and abortion. These are the people who are delivering the diagnosis to parents and families with a total lack of understanding of who these individuals are.

I can criticize doctors and I can criticize the French (that actually seems to be in vogue now) but I wonder where the church is in all this. What is the church's position on down syndrome, for example? Would most pastors even know what it was, or the effects it has on individuals, or what to say to families who had a child with down syndrome born to them?

I wonder if the church in its attitudes towards persons with disability and its lack of knowledge about persons with disability may actually support a position of aborting children with down syndrome, or at least a position that the abortion of a disabled child is somewhat more understandable, or less worthy of condemnation than the abortion of any other child.

As sad as I was to see the piece in Christianity Today because of the story it told, I was also happy to think that maybe stories such as the one told by Ms. Beise would be another step in waking the church to its responsibility towards all of humanity.

The abortion of children with down syndrome is nothing more than a new form of eugenics. Perhaps we are not out to purify the human race, at least not overtly, but the systematic abortion of a particular group of people, people who are lovely people generally, because we don't understand them, or have no experience with them, or project some feelings we might have about what their lives might be like on them, all of which are misinformed is evil and wrong. It is time for the church to rise up in defense of these individuals. The church should be providing counseling about what down syndrome is, and include persons with down syndrome routinely in the congregation. Church people should be at the beside at the birth of a child with down syndrome and begin their interactions by saying, "Children with down syndrome are a gift from God! Bring them to us, we will love them and their families."

McNair

"Bring them to me"

Bring them to me

That is reported as Mother Theresa's response to those who would abort their babies. That is, have the baby and she would take the responsibility for caring for those children who escaped abortion.

Those should also be the words of the Christian church in response to a wide variety of disenfranchised people, but in particular, persons with disabilities. Bring them to us, bring them to church. You know, it is one thing to be against abortion, or mistreatment of people for whatever reason. It is quite another to want to offer solutions to problems, particularly when they involve a committment of time on your behalf. A ministry to persons with mental retardation provides "teeth" to arguments which would support the lives of persons with disabilities. One could never accuse Mother Theresa of just being against abortion. She was against abortion with a solution in hand.

As Christians, we need to do much better in supporting our rhetoric, or maybe I should say in supporting Jesus' rhetoric. As I related in the April 20, 2005 entry from Kierkegaard, "Yes, it is even dreadful to be alone with the New Testament." Particularly if you are endeavoring to follow it in what it teaches. Such an effort first requires that you take the time to find out what it says, and second that you do what it says. Neither of these are particularly easy.

But if we claim to be following Christ, there should at least be evidences that we are making the effort to understand what He said and making the effort to do what He has told us to do. What might those evidences look like?

It might begin with more clarity about what the scriptures say about disability. I am completing a survey of church members from a variety of denominations about disability, and if one thing comes through it is the confusion about who persons with disabilities are. To me this is a reflection of the confusion in the leadership about who persons with disabilities are. Christian leaders need to rise up and take on understanding disability and sharing that theological understanding with others in leadership and with their own congregations. In spite of the presence of persons with disabilities in the community, the presence of persons with disabilities in the scriptures, there is surprisingly little theological writing to guide an understanding of who these folks are from a theological perspective.

Then, because we don't know who they are, we don't know what to do to serve them. At least Mother Theresa had a notion of who a baby is and what her or his needs would be. We don't know who persons with disability are or what their needs are. Sometimes I hear young adults talk about babies as if they are from another planet or something. They speak as if they would be totally unprepared to deal with a baby should they have one. Their speech reminds me of those who are unprepared to deal with a person with a disability. In the same way that a baby being born into a family is totally natural, in the same way, the enfolding of a person with disability into a church should be natural. Interestingly, you will find that those young adults generally do pretty well with their new baby when it comes. The church would do well to.

So I would say to parents of persons with disability, "Bring them to me (the church)" and let us prove our rhetoric with some action.

(fcbu)
McNair

The State Boys Rebellion

I just finished reading a really good book. It is called The State Boys Rebellion: A True Story, by Michel D'Antonio. I have long been a student of state institutions for persons with mental retardation, their beginning, gradual change over time, and their ultimate closing. During that time they went from being representative of the best man could hope for to places of abuse and even horror.

The book does a good job paralleling both the perspective of an inmate in the Fernald State School (which for those in the know, is the place about which Burton Blatt wrote and Fred Kaplan took pictures in the famous book Christmas in Purgatory), with events happening at the same time in the US related to ideas of disability, civil rights, etc.

The story probably came to light in response to the scandal about the "science club" at Fernald where young boys were given oatmeal laced with radiation to test its effects. But the desire of the main character of the story, Fred Boyce, is not so much to tell about the science club, but rather to expose the conditions which were allowed at the institution. Conditions which unfortunately were not uncommon.

So I would recommend the book to get an insight into what we as Americans are capable of if the conditions are as they were in the institutions.

(fcbu)
McNair

John 5

The pastor of my church, Dr. Gary Inrig, gave the most interesting sermon this past Sunday. He preached from the book of John, chapter 5. He had many great insights which I am sure I will write about at other times in this blog (I immediately bought a CD of his sermon), however, one insight he had was the setting for the miracle which is described in the beginning of the chapter. He talked about how the city of Jerusalem would be packed out because fo the feast of the Jews, which meant that the area around the Bethesda pool would likely be more crowded than usual. He related that the physically disabled individuals in addition to perhaps not having the greatest hygiene in the first place, would more likely than not be surrounded by their own excrement and urine. No doubt a setting which would be a real affront to the senses. But the amazing thing was that Jesus was there, in the midst of the poor, the suffering and the filth which had to have been in the setting. The passage is not entirely clear why he was there, or whether he went to the pool directly as his destination. Jesus does notice the man whom he eventually heals, who for some reason caught his eye. He had been disabled for 38 years, the passage says. Jesus also approaches him with an interesting question, "Do you want to get better?" he basically asks, but that is for another blog entry.

Imagine, the Son of God, the Savior of us all, goes to a place of misery and filth and hopelessness and superstition, and heals an ungrateful man in the midst of it all.

Kind of reminds me of what he has done to me, although my misery and filth and hopelessness and superstition and ungratefulness is well hidden, at times even from me.

We serve an amazing God. Oh, that I could be more like him in ministering to those most forsaken and most helpless. Those whose last thread of hope is a superstition. Those who desperately need my help yet will be ungrateful and even try to cause me problems for my trouble in helping them (as the man does in reporting Jesus to the "Jews."

The standard set by our Lord for our service is exceedingly high (or low). We are to have his mind in us. He emptied himself and took the form of a servant. He was equal with God, but didn't consider his equality a thing to be "grasped." I sit and shake my head in amazement.

McNair

Membership

As I mentioned in the last post, I am working on an instructor's manual for an excellent text on special education. One of the themes which comes through over and over in this text, is that there is a dramatic need for community integration of persons with severe disabilities. Professionals seek integration in any way then find it. For example, I was surprised as the low lever of "membership" described in the text. So, classroom membership is evidenced by a name of a child with disability on the classroom roster, or school membership by that same child wearing school colors. That is hardly membership as I would define it. But then I wondered even at that level, what percentage of the persons with mental retardation, particularly adults, would be listed on a church's roster? Even that low level of membership would be a step in the right direction.

At my church, we facilitated all of the adults with severe disabilities having their picure in the church directory. For some, it was the first professional picture they had ever had made. Each received a free 8x10 in addition to appearing in the directory which was a huge treat for them. So much more needs to be done in my church (and done by me for that matter) but I was pleased to see even that level of membership.

But membership means much more to me than a name on a roster or even a picture in a pictorial directory. It implies relationships, and caring, and finding out about another's life situation, and making even the most minimal effort. I would like to think that if my wife and I didn't show up in church for a couple of weeks or a month, that someone would wonder where we were. To me that is membership: being known and potentially being missed. Hopefully the same type of awarness and relationships will begin to occur for adults with disabilities.

McNair

Beards and Pipes

I was provided with the opportunity to write an instructor's manual for perhaps the premier textbook in moderate to severe disabilities, Martha Snell and Fredda Brown's Instruction of Students with Severe Disabilities. In the edited text, there is a chapter on the "Promise of Adulthood" by Dianne and Philip Ferguson, well known experts in the field of special education who are not only professors of special ed, they are parents of an adult son with disabilities.

Anyway, in their chapter they tell the following story.

"We remember working in a large state institution for people with severe disabilities some 25 years ago. This institution closed in June 1998, but at the time, a number of people who worked there had apparently gotten only part of the message about treating people as adults. As a result, over a period of months, all the adult men on the ward grew beards and smoked pipes. Nothing else changed in their lives to encourage their personal autonomy, much less their membership in the community. The beards and pipes were simply empty symbols of adulthood that had no grounding in the daily lives of indignity and isolation that the men continued to lead."

This quote made me think of experiences I have had at church. I remember giving a talk about poverty to a group of adults with mental disabilities and a homeless man. I had an inkling of what it was like to be living in poverty from some of my life experiences, however, many of the members of my audience were living in poverty on a daily basis and had been for years.

I guess the point is, I can think that I am doing something which reflects a change in my perspective, a change in my understanding of something, but is what I am doing really reflect a growth of understanding or only that I have so much further to go. When I go to church I hear people talking about God's love, and caring for your neighbor, and the widow's mite, and love for the poor, but I don't see a lot of poor people, as least disabled poor people at church. And when they do show up, they are unexpected. It's as if the congregation is taken aback, "We didn't expect to see you here" or even "What are you doing here?"

The men in the institution had beards and pipes but no autonomy, and nothing had really changed. But the people allowing them to smoke and grow their beards probably thought they had reached a new stage of understanding. Our "beards and pipes" in churches are that we speak of care for the poor, or God's love, or that we are all equal in God's sight, yet there are a lot of people who might be equal to me in God's sight but are never in my line of sight.

Bob Bennett, one of my favorite singers has a song called "The doing of the thing." In talking about helping those in need, he describes how he could, "mistake the very song I sing for the doing of the thing." What do we in churches mistake for the "doing of the thing?"

The retarded people have beards and pipes. Thats great.

McNair

A theology of disability

In 1965, Robert Perske presentated a paper to a conference entitled "The Church and the Mentally Retarted." The title of his paper was, "An attempt to find an adequate theological view of mental retardation." He discusses "a history of how we have dealt with mental retardation in America" as a kind of a backdrop to the theology which might have been developing at the same time. He discusses periods of "total rejection . . . found early in American society" followed by attitudes about "bad blood and sins of the fathers." From there we proceeded to the feeling of "God's special children with the publication of the books "Angel Unaware" and "Retarded Children: God's Children."

He then says we came to the point where we sought a "special theology." He says, "This is probably the first period in American history that pastors have sincerely sought an adequate theology for the mentally retarded." Ultimately he says, "A special theology may not be adequate . . . the theological view we seek cannot be a special view." He suggests, "Therefore our task should be to enlarge the existing general theological views so that they include the mentally retarded. If we sincerely see the mentally retarded as human beings, we sould struggle to broaden and strengthen our general theological views to encompass people with other deficits as well."

I am unsure that we have actually passed the point of wanting a "special theology." If normalization means treating people as normally as possible, perhaps a once size fits all theology would be sufficient. But one size never fits all, and although we are all humans our experiences are different.

Answers.com defines social construction in the following manner

A social construction, or social construct, according to the school of social constructionism, is an idea which may appear to be natural and obvious to those who accept it, but in reality is an invention or artifact of a particular culture or society. The implication is that social constructs are human choices rather than laws of God or nature.

If a theology of mental retardation would in some way flesh out a God perspective on disability, then perhaps we do need such a theology in order to counter the "invention or artifact" of nearly all cultures about who persons with mental retardaton are. These perceptions are built into us, and become as close to us as intuition or consicence. Clearly cultures see peopel with disability as something different. The church appears to see them as something different. So although we say we are all the same in God's eyes, it seems we have adopted a cultural perspective on disability, as a church, rather than what might be called a theological perspective on disability.

One of my quests has been to try to understand disability from God's perspective to the extent I am able. The main reason is to be able to somehow take off the social constructions which are like blinders on my eyes, making me look in a particular direction, and instead see the truth, the truth about "disability" from a God, or theological perspective.

McNair