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