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

Audacity article

Please check out an opinion piece I wrote for Audacity magizine at the following website.

http://audacitymagazine.com/audacity.php?op=article&y=grfx&v=&i=26&a=322

McNair

The Best and the Worst

It is interesting, that whenever someone wants to make the harshest criticism possible, they compare the behavior of an individual, or a group or a nation to that of Nazi Germany. We can hardly imagine a worse situation then what went on there. It was horrific for so many people representing many different characteristics which were deemed negative by the evil ones in charge. It was the same for persons with disabilities at that time.

We might also think about the worst of times in our own nation (America) with conditions in institutions for persons with disabilities. But as inhumane as those conditions were, they still don't compare with the life taking that occurred under the Nazi regime.

But then, I wonder what I would use for comparison for the absolute best the world has had to offer over the centuries, particularly for persons with disabilities. What might we point to and say, "This is how it should be, this would be the best situation." In considering the world's best, I wonder whether there would be any mention of programs or services, or attitudes, or sacrifice by the church who follow the teachings of Jesus Christ? Would that we could point to our times, have people remember how the birth of love and caring for persons with disabilities really began to happen in the early 2000's. Would that future people would say, "The enfolding of persons into the church that we enjoy today, started then and caught on in the community. It was that caring by the church which shamed the secularists, or at best chided them into being all they could be to persons with disability."

We have plenty examples of the worst. How about we become the example of the absolute best that the world has to offer. The absolute best!

McNair

Ezekiel 34 Part 2

Lets continue to consider Ezekiel 34 for a moment. It continues on, saying,

Therefore this is what the Sovereign Lord says to them: See, I myself will judge between the fat sheep and the lean sheep.

You know, a significant number of persons with mental retardation are "lean sheep" in that they live in poverty, often on fixed incomes. They are poor.

Because you shove with flank and shoulder, butting all the weak sheep with your horns until you have driven them away.

I think there have been times when the fat sheep have shoved the lean ones away. Maybe not with shoulder and flank, but with words and attitudes for sure. With the power they excercise over all the sheep. They shove out by saying that such ministry is not a priority, or that they haven't the money to do such ministry or bring them in. In these ways they give a more holy face to their actions which shove out.

I will save my flock and they will no longer be plundered. I will judge between one sheep and another.

Should God judge between the poor with limited resources and the rich with great resources, how do you think the rich will fare? Will God say that the poor and disabled were not a priority for Him either?

If the church was doing what it should, then

They will live in safety, and no one will make them afraid.
I will provide for them a land renowned for its crops, and they will no longer be victims of famine in the land or bear the scorn of the nations.
Then they will know that I, the Lord their God am with them and that they, the house of Israel are my people, declares the Sovereign Lord.

I think it poignant the way this passage ends. I am not sure what the actual meaning of the last line is, but as stated it is a simple yet jarring statement. The implication is that you might not have recognized the obvious fact of the statement.

You my sheep, the sheep of my pasture, are people and I am your God, declares the Sovereign Lord.

The group we are talking about, are not sheep or something other than people. They are people, the Sovereign Lord declares. People are always a priority, or at least should be. In the Christian faith, if they are not, then what is being evidenced is not the Christian faith.

McNair

Ezekiel 34 Part 1

Lets dance with a few sections of this passage, thinking about the church as the shepherds and persons with disability as the flock. I have pulled a few of the sections of Ezekial 34 out because of their particular applicability.

Woe to the shepherds of Israel who only take care of themselves!
Should not shepherds take care of the flock?

I think the implication is that some sheep were taken care of and some were not. Apparently the shepherds took care of themselves and their families, however, there was a group of people who were ignored. Who were they specifically?

You have not strengthened the weak or healed the sick or bound up the injured.
You have not brought back the strays or searched for the lost.
You have ruled them harshly and brutally.

The weak sick and injured were not strengthened, or healed or bound up. Additionally, they didn't bring back the strays (it seems the assumption is that they knew where the strays were) or search for the lost. Once again, it seems the assumption is that they knew they were lost. Instead, what did they do? They ruled them harshly and brutally. Now I don't know about brutality of the church persons with disability, but I have experienced and read about some harsh treatment on the part of the church towards persons with disability. Examples of that treatment are provided elsewhere in this blog.

So they were scattered because there was no shepherd, and when they were scattered they became food for all the wild animals.

Persons with disability often live at or below the poverty line. When you are poor, you live where other poor people live. There are many nere do well people who live among the poor and like wild animals they take advantage of the poor, particularly the mentally disabled poor. But why were they scattered? Because there was no shepherd. You don't know how often I hear church leaders excuse themselves from responsibility for persons with disability because of the their lack of funds. There are funds for other programs, oftentimes for programs for people who are not scattered or weak or sick or injured.

My sheep wandered over the mountains and on every high hill.
They were scattered over the whole earth, and no one searched or looked for them.

I was floored to find out that 20% of the population of the United States are disabled. Not all are cognitively disabled, but disabled nontheless. Why isn't the church looking for these people to bring them in. One could take the idea of being scattered as being lost, but one could also take it as that they are everywhere. They are on every high hill. But no one is looking for them.

More on the rest of this section in part 2.

McNair



"Therefore this is what the Sovereign Lord says to them: See, I myself will judge between the fat sheep and the lean sheep. Because you shove with flank and shoulder, butting all the weak sheep with your horns until you have driven them away. I will save my flock and they will no longer be plundered. I will judge between one sheep and another. I will place over them one shepherd, my servant David, and he will tend them: he will tend them and be their shepherd. I the Lord will be their God, and my servant David will be prince among them. I the Lord have spoken.

They will live in safety, and no one will make them afraid.
I will provide for them a land renowned for its crops, and they will no longer be victims of famine in the land or bear the scorn of the nations.
Then they will know that I, the Lord their God am with them and that they, the house of Israel are my people, declares the Sovereign Lord.
You my sheep, the sheep of my pasture, are people and I am your God, declares the Sovereign Lord."

Ezekiel 34

A student of mine, Ms. Kimberly DeHuff shared a verse she had noticed in the book of Ezekiel. She encouraged me to read it with persons with disability in mind. It is really powerful. I provide it here fyi, and will try to unpack it a bit over the next few blogs.

Ezekiel 34
The word of the Lord came to me: "Son of man, prophesy against the shepherds of Israel; prophesy and say to them: 'This is what the Sovereign Lord says: Woe to the shepherds of Israel who only take care of themselves! Should not shepherds take care of the flock?
You eat the curds, clothes yourselves with the wool and slaughter the choice animals, but you do not take care of the flock. You have not strengthened the weak or healed the sick or bound up the injured. You have not brought back the strays or searched for the lost.
You have ruled them harshly and brutally. So they were scattered because there was no shepherd, and when they were scattered they became food for all the wild animals. My sheep wandered over the mountains and on every high hill. They were scattered over the whole earth, and no one searched or looked for them.

"Therefore, you shepherds, hear the word of the Lord: As surely as I live, declares the Sovereign Lord, because my flock lacks a shepherd and so has been plundered and has become food for all the wild animals, and because my shepherds did not search for my flock but cared for themselves rather than my flock, therefore, O shepherds, hear the word of the Lord: This is what the Sovereign Lord says: I am against the shepherds and will hold them accountable for my flock. I will remove them from tending the flock so that the shepherds can no longer feed themselves. I will rescue my flock from their mouths, and it will no longer be food for them.

"For this is what the Sovereign Lord says: I myself will search for my sheep and look after them. As a shepherd looks after his scattered flock when he is with them, so will I look after my sheep. I will rescue them from all the places where they were scattered on a day of clouds and darkness. I will bring them out from the nations and gather them from the countries and I will bring them into their own land. I will pasture them on the mountains of Israel, in the ravines and tend them in the good pasture, and the mountain heights of Israel will be their grazing land. There they will lie down in a rich pasture on the mountains of Israel. I myself will tend my sheep and have them lie down, declares the Sovereign Lord. I will search for the lost and bring back the strays. I will bind up the injured and strengthen the weak, but the sleek and the strong I will destroy. I will shepherd the flock with justice.

"As for you, my flock, this is what the Sovereign Lord says: I will judge between one sheep and another and between rams and goats. Is it not enough for you to feed on the good pasture? Must you also trample the rest of your pasture with your feet? Is it not enough for you to drink clear water? Must you also muddy the rest with your feet? Must my flock feed on what you have trampled and drink what you have muddied with your feet?

"Therefore this is what the Sovereign Lord says to them: See, I myself will judge between the fat sheep and the lean sheep. Because you shove with flank and shoulder, butting all the weak sheep with your horns until you have driven them away. I will save my flock and they will no longer be plundered. I will judge between one sheep and another. I will place over them one shepherd, my servant David, and he will tend them: he will tend them and be their shepherd. I the Lord will be their God, and my servant David will be prince among them. I the Lord have spoken.

"I will make a covenant of peace with them and rid the land of wild beasts so that they may live in the desert and sleep in the forests in safety. I will bless them and the places surrounding my hill. I will send down showers in season: there will be showers of blessing. The trees of the field will yield their fruit and the ground will yield its crops; the people will be secure in their land. They will know that I am the Lord, when I break the bars of their yoke and rescue them from the hands of those who enslaved them. They will no longer be plundered by the nations, nor will wild animals devour them. They will live in safety, and no one will make them afraid. I will provide for them a land renowned for its crops, and they will no longer be victims of famine in the land or bear the scorn of the nations. Then they will know that I, the Lord their God am with them and that they, the house of Israel are my people, declares the Sovereign Lord. You my sheep, the sheep of my pasture, are people and I am your God, declares the Sovereign Lord."

Very powerful to think of the shepherds as we in the church, whether we be in leadership or not, and the sheep being those who are disabled or disenfranchised.

McNair

Not really a new way to discriminate

Last night we had another meeting in Redlands Ca. relating to a group home for medically fragile, developmentally disabled adults. A group of neighbors to the future home were there and they claimed their major cause for concern was that the group home developer represented himself as adhering to the homeowners association agreement, and then changed the home by putting doors on the sides of the house so the wheelchair bound residents could exit the building in case of fire. They were appalled that he would be dishonest in this manner.

Now I agree that he may have done this, not be entirely honest. He may have signed the homeowners' agreement with the full knowledge that he was going to make alterations to the home, and that was not entirely truthful. But I also sat there amazed at the people who were using this argument to discriminate against persons with developmental disabilities. They spoke of property values going down, and how the neighborhood would be devalued, of how their children would be unsafe and how the house would be poorly kept all due to the placement of the home in the community. They even had the nerve to ask whether people would be "peeing in their bushes."

As a boy, I grew up in a predominantly white neighborhood of Southern New Jersey. There were very few African Americans or Hispanics, or other persons who weren't white who lived in my neighborhood. I can clearly recall hearing adults talk about how the property values would go down, how the homes would not be properly cared for, how they feared for their children should anyone other than a white person fill any vacant house in the neighborhood. I can even remember people speaking about an unwritten agreement that homes would not be sold to anyone other than a white person. This is correctly referred to as bigotry or racism.

Yet, although there were those in the meeting from groups who have experienced significant bigotry and racism, they didn't connect their behavior to that of others who experienced discrimination.

Now imagine I developed a homeowners' association, and somehow we were able to establish a rule about homes that would somehow prohibit persons of ethnicity X from living in the neighborhood. However, a person of ethnicity X wants to live in the neighborhood. In order to live in the neighborhood, the person of ethnicity X comes in and makes the change required for him to live in the neighborhood, and the homeowners' association comes down against him for breaking the homeowners' association's rules. Can you imagine the charges of racism or bigotry? Those charges would be justified, unless the homeowners' association reflected on their rules and said, "We have made a huge mistake. We didn't intend our rules to be discriminatory against group X." If, however, that same homeowners association said, "We don't care, we have a homeowners' association and those are the rules," we would begin to wonder about their motives.

Well, the homes in question do not allow for particular types of modifications. In this case, the doors which were added to the sides of the house, to allow for the exit of the wheelchair bound residents were against the homeowners' rules. So in effect, persons having the types of disabilities of those who will live in the group home are excluded from the neighborhood. It was countered that the backside of the house is wheelchair accessible. The association rules indicated, however, that no ramps were permitted to be added to the front of the house. As one person commented, "If I am going to spend 500K for a home, I'm going in the front door."

Can you see how this is a civil rights issue? I can write seemingly innocuous rules, which are largely to protect the aesthetics of the neighborhood, which in reality can be discriminatory against a particular group of people. Not people who want to paint their house purple, but people who want to go into the front door of their house, or be able to get out in case of a fire.

By the way, to my knowledge, there was only one pastor of a church who attended any of the meetings, and he is the parent of a son with a disability.

What ever happened to doing justice?

McNair

A hero's perspective

I picked up a copy of Beowulf at a used book sale. It is a story I love because of the way it portrays heroism in the face of absolute despair. The Danes of the story, were literally just waiting for Grendel to come and eat them in the most hideous manner. Beowulf, however, comes onto the scene, and well, without giving away the ending, is the hero. In describing Beowulf, the book says the following

"Beowulf was the rare kind of person who makes strength of his own weaknesses. His eyes being poor, he determined to see not just as well as other people, but better than most. He did this by cultivating habits of quickness and concentration that enabled him to be truly seeing where others were only looking. And this matter of the eyes was typical of his whole manner of being. Beowulf had made the best of all he had, putting each imperfection to work in the service of his integrity. Thus, his real strength lay in the balance of his person-which is, perhaps, another way of saying that he was strong because he was good and good because he had the strength to accept things in him that were bad." (from Beowulf A new telling by Robery Nye,1968)

In understanding his weakness, Beowulf determined to be better than most in his area of weakness. Weaknesses can cause us to throw up our hands and give up, or can spur us on to work through those weaknesses. Weaknesses can become excuses, or can cause us to see things in a different way, solve problems in a different way, to the point of out doing those who don't experience our weakness. I think about this with small churches. One of the excuses for not engaging in ministry to persons with disability from small churches is the supposed cost of such ministries, the resources required, etc. Taken to its logical conclusion, small churches are not responsible for ministry until they become big churches. But God calls us to be sheep, not goats, and there are no caviats for the service He requires. Does Jesus anywhere say, you know, when you have sufficient resources, then you can begin to be involved in service. But until then, you don't have to do anything.
Actually, I think that small churches have many advantages over other types and sizes of organizations. Relative to persons with disabilities, I wonder whether they have taken the time to find out what those advantages might be. It is interesting in the literature on employment of persons with disabilities, for example, that small mom and pop work places are often desirable over larger corporations. Why? Because the workers with disabilities become more pivotal to the functioning of the business. They begin to be seen for their strengths, and are relied upon. Larger corporations have the luxury of many employees, and therefore don't need to depend upon individuals quite as much. Small churches, therefore, might hold the greatest potential for integrating persons with disability and really tapping the depths of the gifts they bring.

Beowulf also wanted to be able to see in areas where others were only looking. I live on 5 acres and have a big time gopher problem. That is, until I started trying to see them and shoot them with my .22 rifle (I know, it sounds very red neck, but I am getting pretty good at it and my yard isn't as swiss cheesy as it was). Anyway, I have gotten to where when I look at my yard, I can detect the tiny movements of the gophers, whereas before, it seemed I never saw a gopher, just the hundreds of holes which told me they were there. You can be in a setting, even looking around in that setting and never see the setting. I am delighting in students of mine at California Baptist University, who have been looking at their churches and seeing the absence of persons with disabilities. They are gaining Beowulf's eyes in seeing what others are only looking at. I would argue that they are gaining a glimpse of God's perception of the setting. They are seeing the absence of persons whom He loves.

Finally he worked at putting each imperfection to the service of his integrity. This is an interesting notion, which is actually scriptural. We know of passages where we hear that faith is perfected in weakness, or in Paul quoting God, "My grace is sufficient for you." Do we know how to put our imperfections in the service of our integrity? Do we have even the faintest notion of helping others to put their imperfections in the service of their integrity? I am often impressed by the faith of persons with mental retardation whom I know. They are by all measures, cognitively impaired. Yet they often have what Christ says that I need, the faith of a child. I get hung up on doctrine, and experience. I get confused by my normal intellect. They have the faith of a child. I am not prepared to say that people experience "disability" so that they can put their "imperfections" to the service of their integrity, however, there is that potential, and the church is the perfect agent to facilitate that understanding of disability. But people with disabilities need to be in the church, and we need to be prepared to help them to connect the dots to make sense of their life experience, particularly for those with disabilities acquired later in life.

McNair

The log in my own eye

PRISM ePistle [epistle@esa-online.org] is an emailed newsletter which speaks to social issues of our day, and is related to Evangelicals for Social Responsibility's Prism magazine. The epistle dated Wednesday, April 20, 2005 began with the following "Thought for the day," a quote from Soren Kierkegaard. It caught me off guard with its directness and cut me to the quick.

THOUGHT FOR THE DAY
"The matter is quite simple. The Bible is very easy to understand. But we Christians are a bunch of scheming swindlers. We pretend to be unable to understand it because we know very well that the minute we understand we are obliged to act accordingly. Take any words in the New Testament and forget everything except pledging yourself to act accordingly. My God, you will say, if I do that my whole life will be ruined. Herein lies the real place of Christian scholarship. Christian scholarship is the Church's prodigious invention to defend itself against the Bible, to ensure that we can continue to be good Christians without the Bible coming too close. Dreadful it is to fall into the hands of the living God. Yes, it is even dreadful to be alone with the New Testament."
- Soren Kierkegaard, from "Kill the Commentators" in PROVOCATIONS

Wow. I see that sentiment in myself. The New Testament is scary in the demands it makes on a person. Without the forgiveness of Christ it would indeed be "dreadful to be alone with the New Testament." As a man with a family a job and other responsibilities I have chosen, embraced in life, I wonder if I, myself am who I should be. I could easily spend myself, pour myself out like a drink offering. The opportunities to do good, the venues for service, the people I could touch are weighed over against the decisions I make. I think back on the Tolkien reference I made in the last entry:

"They do not perceive the complexity of any given situation in Time, in which an absolute ideal is enmeshed."

I pray that I see the enmeshed ideals in common human interactions.God forbid that I should pretend to be unable to understand or even ignore what I know that I should do, because I know very well that the minute I allow the realization of understanding, that I will be obliged to act accordingly.

I will continue to exhort the church, but as Bob Bennet says in his song, "may the words of my mouth fall to my heart."

McNair

City Council/Group Home

In the city in which I live, Redlands California, there was a city council meeting last night. One aspect of the meeting was a discussion of a group home for medically fragile, developmentally disabled adults which was scheduled to go into a neighborhood in Redlands. It was an interesting barometer of the sentiment of some people towards persons with mental retardation. Kathi and I left there feeling like we had a inkling into what community discrimination on the basis of race might have felt like.

Anyway, one person got up and chided the City Council that when an adult from the group home runs out into the street and gets hit by a car, it will be their fault. Another person dramatically waved at her baby (who perhaps,lucky for her was not disabled, but probably will be as a result of growing up with that mother, at least attitudinally) during her remarks about how it will be dangerous for her daughter if mentally retarded people live in the neighborhood. A man stood up and related how the group home developer had told him not to make eye contact or say hello to the residents because they will not leave you alone. I would hope a group home developer would have better sense than to say something like that which could hardly help but inflame the fears of the persons having homes around the group home. Next a woman spoke up wondering where the churches and religious people of the community were on this issue. That the community needed to be more accepting. A speaker from a state agency spoke about group home regulations, and in some ways added to the irrational fears rather than allying them. A mother of a man with disabilities spoke from her experience and hoped that a man like her son would be accepted by the community.

At that point I was called on and went forward with two of my friends who were adults with developmental disabilities living in group homes. Joyce is a woman with higher cognitive abilities and Josh a man with lower abilities in that area. Joyce told that she worked at Baker's Restaurant and her recent trip to Las Vegas to see Tom Jones, and I described Josh's work at an adult day care center. Anyway, I introduced them, spoke briefly about the fear of the unknown, how when families have a child born to them they are suddenly struck with the discrimination of the community (of which they may have been a part in the past) and expressed my desire to get into the face of the group home developer about his comments regarding not interacting with the adults who would live in the group home. I was reminded of the statistic that says that many adults with developmental disabilities only know one person without disability in the community and many none. No doubt the warnings of people like the group home developer fuel such lonliness. It also made me wonder about the fitness of the developer to have group homes if he was that misinformed about who persons with mental retardation are. I concluded my remarks (3 min) by saying the reason that he probably made the comment about not interacting is that the adults would try to develop a friendship with their community neighbors. At that point, Susan Peppler, the Mayor of Redlands graciously commented that they would be good people (the group home members) to develop a friendship with, or something to that effect. The audience applauded briefly, and Josh became very animated, making the "raise the roof" gesture. The audience loved it and we left.

Obviously the church is not responsible for every societal ill, and cannot cure everything. But I couldn't help but wonder how the discussion might have changed if the church had had a greater presence in the community toward persons with disability. I particularly wondered in a city like Redlands, where there seems to be a church on every corner.

"O man, He has declared to you what is good. And what does Jehovah require of you, but do do justice, and to love mercy, and to walk humbly with your God?" (Micah 6:8)

McNair

We must work the works: John 9:3-5

Nearly a year ago, I related the following in a blog entry:

John 9:3-5 says,
"Neither this man or his parents sinned" said Jesus, "but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of him who sent me. Night is coming when no one can work" (NIV).

Jesus said this in response to his disciples asking about a blind man they encountered, "Who sinned, this man or his parents?" They were wondering who's sin caused the blindness.

Merril C. Tenney, the Bible scholar wrote that this passage might be translated in a different way. Here is Tenney's translation.
"Neither did this man sin, nor his parents" said Jesus. "But that the works of God should be made manifest in him, we must work the works of him that sent me, while it is still day; the night cometh when no man can work."

One of Tenney's points with his translation is that the works of God are made manifest in persons with disability by the things those around them do. The works of God were not made manifest solely through the healing of the man by Jesus. An interesting perspective to consider. An interesting plumb line for evaluating the response of the Church to persons with a variety of disabilities.

This morning, Kathi and I had the pleasure of having coffee with some friends who are parents of a daughter with down syndrome. They related the story of how their daughter will engage in a game of "keep away" with a couple of boys in the neighborhood. Invariably, the game becomes those two boys keeping the ball away from their daughter until the game finally ends. Independent of whether or not the gal with the disability recognizes that she is being taken advantage of in the game, it is obvious that those two boys are not working "the works of him that sent me while it is still day." Now its not that the boys are being particularly evil or something, but they certainly are not being kind to the girl. Working "the works of him that sent me" would probably look a lot less competitive in this case (I have nothing against competition), and reflect, I don't know, fairness, encouragement; evidences of works of God.

People with disability in our midst, provide us the opportunity to work the works of God. Don't hear me wrong. They are not in existence so that I might gain some brownie points with God. That would belittle the importance of their lives and accentuate the importance of my life. I see no evidence from scripture that I am to do either. However, as with the opportunity to help any person who needs it, the chance is provided to work the works of God. At times I will work the works and at other times I will receive the benefit of someone else working the works. The take home lesson, I believe, is that we are all surrounded by opportunities to serve others and we need to take advantage of those opportunities. We are all equal before God.

In response to a letter about his Lord of the Rings, J.R.R. Tolkien penned the following,

Frodo indeed ‘failed’ as a hero, as conceived by simple minds: he did not endure to
the end; he gave in, ratted. I do not say ‘simple minds’ with contempt: they often see with clarity the simple truth and the absolute ideal to which effort must be directed, even if it is unattainable. there weakness, however, is twofold. They do not perceive the complexity of any given situation in Time, in which an absolute ideal is enmeshed. They tend to forget that strange element in the World that we call Pity or Mercy, which is also an absolute requirement in moral judgment (since it is present in the Divine nature). In its highest exercise it belongs to God (emphasis added) (From Carpenter & Tolkien (1981), The Letters of J.R.R. Tolkien, #246, pp. 326)

There is a depth to the situations of my life. I may not be attending to the depth but it is there nonetheless.


McNair