Christian Institute on Disability, Beyond Suffering Curriculum for iBooks

Beyond Suffering iBooks version has just been released.  It was published by the Christian Institute on Disability, an arm of the Joni and Friends organization.  This is an inexpensive option (about $15) for those interested in studying disability and the church.  The iBooks version includes the curriculum, videos, nearly 40 original articles and even powerpoints to use in teaching the course.

Check out the link above.  It is well worth the investment in the download.

The wrong models (commoditization of disability)

Some recent thoughts...

The state is focussed on a medical model which places disability within the individual with impairment, not seeing the social consequences or facilitating the support of the community. This is not to necessarily advocate for a social model, however, efforts at change are almost exclusively aimed at the individual with impairments, rarely at the community, or changes in the community such that integration would have a greater likelihood to occur. We ca easily see this in the activities in which paid service workers engage being so community isolated and individual focused.  Two lives result, disconnected as a result of the power of human service workers. 
Power in their regulation of all aspects of life.
Power in ensuring what is administratively convenient.
Power in their lack of training in community integration development: yet they are undaunted by a lack of knowledge.. 
Power in their refusal to integrate those with disabilities into their own personal lives: partly due to a misunderstanding of what is allowed, partially not caring.
Power in their use of community integration as something unnatural...a reinforcement for good behavior in one's regulated life.  Integrated life is like the ice cream cone you get for being a particularly good child...very foreign and outside of your typical experience, which is what makes it particularly good as a reinforcement.

The flip side is the way the Christian church has developed.  As in previous posting, they have been "fed in a particular way".  The result being that church universal turns care of persons with disabilities over to the state and the church by and large doesn't integrate, evidence of a lack of love toward people with disabilities.

The end result of both of these models is exclusion from the natural and reliance on the expensive: community based natural supports largely unavailable, paid for supports from "experts" pervade.  The natural result of community integration is like a metaphoric seed that never gets the opportunity to sprout and grow. When it does begin to grow, it becomes threatening to those who will lose their power over the person with the disability.  The regulated learn life unregulated and begin to like it.  But the threatening nature of community involvement results in the growing seed being cut back to the roots by those with power over the regulated and unregulated lives of persons with disabilities.

McNair

Fed in a particular way

On a recent trip to Uganda, I had the pleasure of meeting and hearing a bishop of the Anglican church, the Right Reverand Michael Nazir-Ali.  He was brilliant and delightful company and I was blessed to meet him.

In one of his sermons, he made the comment relating to being "fed in a particular way" as leading to a particular type of discipleship.  This notion of being fed in a particular way really began to ruminate in me.  I thought that if you are fed in a particular way it might lead to a particular set of actions or responses.  If my feeding is largely cerebral, I will probably expect a cerebral response.  If my feeding is largely emotional I might expect an emotional response.  If my feeding makes no demands for action or demands me to do something I will not act.  If my feeding is geared toward doing something, particularly doing something in the service of others, then chances are I will act in that way or in a manner that reflects my feeding.

I also got the feeling that you can be fed in such a way that you don't get beyond a particular discipling stage.  That is an interesting idea as well.  Maturity in ministry would cause us to think about the discipling stage of those we are discipling.  If we are sufficiently aware, we would try to determine the connection between the particular way we are feeding people and the particular outcome of that discipling in order to evaluate our feeding practices.

I can't help but wonder what the exclusion of persons with disabilities indicates abour the particular way that the church has been fed.  If everyone from the leadership on down shows no interest in devalued people or persons with disabilities that would imply something about how those people have been fed.  They have been fed to believe that they have no responsibility for their neighbor with a disability.  They have been brought up on an exclusive form of love that feels no hypocrisy in not loving some people.

I think we really need to look at ourselves, at our churches, at the behaviors of churches and ask ourselves if who we are is an artifact of how we have been fed, and when will we change that way of being fed such that we are better prepared and provided with better motivation and opportunities to love our neighbors.

McNair

Nate's story

A man named Nate once went to a church leader for council.  Apparently, Nate's son, an adult with cerebral palsy had had a difficult time at a recent Association for the Fair Treatment of People with Cerebral Palsy meeting.  The man related first of all that the building where the meeting was held, was not accessible.  Several people attending the meeting noticed that he could not enter and helped the man with cerebral palsy to gain entrance to the building.  Once inside, he was surprised to find that he was shunned by the people attending the meeting.  When people did speak with him, they spoke as if he were a little child.  When he asked about meeting activities that he could be involved in, the membership indicated that they felt he had little to offer.  Rather, they asked himi to sit quietly so as not to disturb those in attendance, fearing that he might drive them away.  After a time, the man met some people who were interested in him.  They started a sub grouop of the organization in which he and others like him could get together.  However, the people interested in him moved to a different chapter of the organization and the organizational leadership showing no interest allowed the subgroup to dwindle and eventually the man with cerebral palsy was left alone.  At that point, no one in the Association for the Fair Treatment of People with Cerebral Palsy seemed to notice or even care.

Upon hearing the story, the church leader was amazed at the lack of caring shown by the members of the organization whose basic creed was to support people with cerebral palsy.  The church leader said,

"What kind of organization is this!?  Their very name implies that they should be treating your son with fairness, yet, not only to they pay no attention to him, they even seem uncaring.  I say that they have lost their reason for being!"

Nate then said to the church leader,

"You are that organization, you are the leader, and the churches represented by you are that organization's members.  The persons with disabilities in your community whom you ignore are my son."

And the church leader's eyes were opened and he repented of his lack of love and compassion.

McNair

Call for Papers Journal of the Christian Institute on Disability

CALL FOR PAPERS

 

The Journal of the Christian Institute on Disability (JCID) announces a call for papers for future journal issues.  The next issue will focus on Friendship.  Future journal topics will include: Leadership and Disability, Maturity in Disability Ministry, The Old Testament and Disability, Christianity and Disability Studies, Special Education in Christian Schools, Education of Students with Severe Disabilities, and Human Services.

 

Authors are also invited to submit original work for review in other areas of interest.  Questions about topics, articles or future issues may be sent to Dr. Jeff McNair at jmcnair@joniandfriends.org.

 

Instructions for Authors

 

Submission of Manuscripts

All manuscripts should be submitted electronically to the Senior Editor, Jeff McNair, Ph.D. at jmcnair@joniandfriends.org.  Each manuscript must be accompanied by a statement indicating that the work has not been published and/or is not being simultaneously submitted for publication elsewhere.  Authors are responsible for obtaining permission for the use of any copyrighted materials.  Authors are also required to sign an agreement for the transfer of the work’s copyright to the publisher.  Manuscripts should be prepared using the style of the American Psychological Association (APA).  This includes formatting, reference citing within the text and a reference section at the end, running head and page numbering.  The manuscript should be double spaced throughout, with margins of one inch on all sides.  We also request the submission of an abstract (100 words maximum), five key words, and a maximum 30 word biography about each author including degrees, position and email of lead author.  Articles should be approximately 7,000 words.  Articles will be sent to consulting editors for anonymous reviews with publication decisions shared with authors.

 

Illustrations, Tables & Figures:  Illustrations, tables and figures should be prepared according to APA style requirements. Illustrations should be submitted as digital files and not embedded in the text.  No color illustrations will be accepted.  Tables and figures should not be embedded in the text, but included as separate files or in an appendix.  Authors may indicate within the manuscript, the approximate location of the additional material, within the article.

 

Proofs:  Page proofs are emailed to the lead author for review.  They must be returned within 72 hours of receipt.

 

Article reprints:  Each author will receive three complimentary hard copies of the journal in which their article is published.  They will also receive a complimentary PDF version of their article for their personal use only.  JCID articles are not to be copied and/or disseminated without prior permission from Joni and Friends.  Requests for reprints should be submitted to cid@joniandfriends.org .

Entering into the suffering of others

We are in the midst of the Christmas season.  To the Christian, Christmas is about God "emptying himself and taking the form of a servant" (as it says in Philippians 2).  To use human terms, Jesus as God was having this perfect existence as God.  But He saw the desperate condition of His creation and came to them to save them, to give them hope, to be with them as they are.  Once again as Philippians says, "He didn't think equality with God was a thing to be grasped" or held onto.  He left his perfect existence to help us who have no perfection.

I have been thinking about this idea a lot.  I know very little about suffering compared with probably most of the rest of the people in the world.  I have a perfect family, a perfect job, dear friends, have never known hunger or want.  Yet all around me are people who for a variety of reasons experience all forms of suffering.  If I am to follow the example of Christ, I will recognize that perhaps I am not experiencing suffering, at the moment, so that I can support and come alongside of those who are.  As my son has told me, he has wept over suffering, but not his own.  Rather it is the suffering of others that he has entered into.

Hurting people are a morass of difficulty sometimes.  If we try to dance around them with platitudes we may help a bit, but we will not know their suffering.  People's lives are often a mess, and you cannot help if you do not get messy yourself.  A homeless man that I know has often told me that I want to take "an arm's distance approach to helping" meaning that I am not willing to dive into the difficulty that is his life.  I am sure there is some truth to that.

1 Corinthians 12 talks about the body of Christ as a metaphor for the church.  It says if one part suffers the whole body suffers.  I don't think that is true.  Perhaps that is the way it is supposed to be but I don't see that being practiced to the degree it should be.  In order for me to suffer with you, I need to enter into your suffering in some significant way.  For you to suffer with others, you must enter into their suffering in some way.  I can't really tell you how to do that, for you, but you won't have to look to far to find hurting people whose lives are a mess.

Follow the Christmas message of Christ who although He was in the form of God did not hold onto his right to be left alone as God, but humbled himself and took the form of a servant.  Why he would want to enter into the sinful muck that is our lives is unfathomable.  But He did it out of love which is a good motivation for us as well.

McNair

Cause for Life

Cause for life is a program of the Joni and Friends organization's Christian Institute on Disability. 
Their website says,

Cause 4 Life Global Missions and Internships prepares today’s emerging and next generation Christian leaders for ministry, missions, advocacy, and justice for people affected by disability around the world.

Just recently, they have made a video describing opportunities for internships.  It is a very powerful video for an amazing program.  The director of Cause for Life, Rev. James Rene is a man with a passion for Jesus Christ, for the training of interns in the heart of God, and the development of ministry to persons with disabilties.  View their amazing video at the link below.

http://www.joniandfriends.org/cause-4-life/
 

"Segregation feeds self-interest and integration fights self-interest"

At the meeting of the ministry directors of Joni and Friends today, Doug Mazza, CEO, made a very powerful statement.  He said,

"Segregation feeds self-interest and integration fights self-interest"

Such a powerful statement that cuts to to the quick about what are too often the motivations for segregation.  If I don't have you with me, you cannot make demands on me, so I can continue on in my own self-focussed self-interest.  I can claim that your segregation is in some way what is best for you, but in reality it is all about me. I will not need to change to accommodate you.  I will not be inconvenienced by you and your need to have me do something for you.  I won't have to change my programs, or my schedule, or make room for you in my car.  I don't need to find out about your life, the challenges you might face from agencies or the community and that makes me happy because I am focussed on self-interest.

Integration truly is the enemy of self-interest because if you are with me, I have to consider your wants, your needs, YOU, in the things that I do. Your presence, integrated with me, will make me feel uncomfortable about my affluence if I you are poor.  Your presence, integrated with me, will make me worry about whether you are being treated well by the community.  Your presence, integrated with me, will make me wonder whether you have friends and whether I perhaps could be your friend.  I start thinking about all kinds of things that take my mind off of myself. 

I have heard people at times complain about their inability to worship when people are present who are typically segregated because of their social skills, or behavior, or even appearance.  This should point to the fact that even worship is at times all about self-interest, once again.  I should be able to worship in the manner in which I have become accustomed because you have not been with me.  Don't know where you have been, but it is better for me if you are there.  Rather than coming to the inclusive definition of worship that would come with integration, I prefer the self-centered notion of worship where you are segregated.

When I think about the example of Jesus and the people who crowded him, the people to whom hs spoke, the people he interacted with and healed, I can only think it must have been a very integrated, third world group.  Yeah, people would tell others to "Shut up!" but Jesus would call their name and ask them to come and meet him.  I want to be like that.  I want my life to be integrated as much as I am can: not choosing to segregate myself from others out of my own self-interest.  I wish I was better at that then I am.  I want my lifestyle of inclusiveness to be a soldier that is truly fighting the battle of defeating my self-interest because anything that can help me to do that, will make me more like Jesus, will develop my faith, will model the reality of how life should be.  In the same way that devalued people need to be with me, I need to be with devalued people.  Not because of what I can do for them, but for what they can do for me in defeating my desire for comfort, desire to be left alone, desire for my own self-interest.

Memorize Doug's phrase.  It will impact your day to day life and how you understand the life of the Church,

McNair

"Rights without opportunity is meaningless"

"Rights without opportunity is meaningless" is how Zola (1988) characterized the issues he was discussing in reference to independent living for individuals with disabilities.  However, the same could equally characterize the right to religious freedom purportedly given to those with disabilities who live in residential facilities.
"Sure, you have the right to religious freedom, but I am not taking your to church."  Or as I have heard recently, "We are taking a break from church."  How can someone who is responsible for the lives of persons with disabilities in a residential setting say to people who have been expressing religious faith by the attendance at a church, "We are taking a break from church?"  I am about to press the issue with a particular home, but it indicates the depth of the problem.  People can be attending church for a long time (in this case, probably 10 years) and suddenly have that opportunity taken away from them on a whim by their "care providers."  Where is the state protecting their religious freedom?  Do their agency workers even know that they attend church?  If community integration really was a desire of human service workers, be they the directors of a group home or those who monitor the group homes, or those who are the social workers for the persons living in the group home, they would want to know whether those who have chosen to attend church are actually doing so.  That they don't know or care is a part of the problem.
Those who run homes have pervasive power over the lives of those who live in the homes.  I don't believe this is how the system was meant to be.  If it was meant to be this way then it needs to change, and change dramatically.  I have seen the individuals who are hired as group home "parents" and not all are great people.  I remember one home where several women lived, where the man who was the "parent" would at times show up at the front door in his boxer shorts.  Yet these are the people who are making decisions about what a person living in a group home may or may not do.

But thinking again about religious freedom, if you have such freedom, but are never given the opportunity to attend a religious group, never have the opportunity to meet people who attend religious groups, never have the opportunity to hear or learn about religion, then you truly do not have religious freedom.  In reality, you are largely trapped as the person who exited school and entered the home by the plan that was developed for you at that time.  How many of you who are reading this blog are the same person you were when you exited High School?  In these plans, there seems to be little expectation for human growth and change.  How many of you have not explored other ideas which have influenced the way you are as more mature adults today?  Additionally, the life of a student in public school, even if in special education classes, is much different than that of a disabled adult in the disability care system.  In school there was at least the possibility that you would see nondisabled peers.  Chances are the increased time you spent with your family would allow you access to people with whom you could be integrated.  However, the adult service system is almost entirely cut off from community integration, relegating people to a segregated existence with those who are paid to be with them.  Unfortunately, I think that is how people in human services want it to be because it is easier for them.  I think too many group home providers would prefer to not have community members in the lives of their residents because they bring the dangerous ideas of autonomy and rights, and the things that cause a person to have a real life.

If we truly believe that those whose lives are regulated by people who are regulated by agencies deserve rights and freedoms, then we must provide opportunities for them to exercise those rights.

Otherwise, as Zola states, rights are truly meaningless.
McNair

The centrality of disability exclusion

Imagine I was the pastor or leader of a church.  One of the members of my church comes to me and says, "We need to reach out to white (or black, or brown or yellow or whatever, for the sake of this example, lets just say white) people.  There are white people who would be a part of us if we would welcome them and include them."  Imagine if I responded, "We don't serve white people.  White people are not a priority for ministry."  That statement would on some level now be the central issue in my church.  I would now be the leader of a racist church because I would not serve people of a particular skin color.  I might have a wonderful homeless ministry, or support poor people.  But because of that stand, I am now the leader of a racist church.  There is no logical reason for me to not serve people on the basis of that personal characteristic.

Well, there are churches who will say, "We do not serve people with disabilities."  Or they may say, "People with disabilities are not a priority for ministry."  This now becomes a defining characteristic of this church.  They are known by the fact that they will not serve people with impairments.  However, this has not become a characteristic that separates one church from another because too many of them take this position.  If every church is racist, then a racist church would not be called out about their racism.  If every church is excluding people with disabilities, then an exclusive church will not be called out on their exclusion.

But in the same manner that the civil rights movement (a movement that changed society in a morally positive direction in contrast to many movements today which are taking society in a morally negative direction) called attention to racism, movements today need to call attention to exclusion of persons with disabilities such that that form of exclusion gets called out and confronted.  It should be that the exclusion of people with disabilities in a local church is something that people should see as central to who a particular church is.

"How can that church claim to love Christ and not include disabled people?" should be the kind of question that people should be asking.  "They may have a good homeless outreach, but don't try to be a disabled guy there.  They want nothing to do with those people." should be a condemnation that hits hard.  "They sure talk a lot about being prolife, but if you have a kid with autism and want to go there, well they get quiet then."

Can you see how this type of exclusion is not a choice, at least should not be a question of choice.  If I get this wrong, if I exclude people because of their impairments, it indicates I get the most basic of all Christian foundations wrong...I get love wrong.  That, therefore, makes the exclusion of people with impairments a central issue in evaluating churches.

McNair

Tolerantism

I am an advocate for people with disabilities.  I will do my best to convince you of my position on a variety of issues, hopefully with logical argument.  However, I am not what might be called a "tolerantist."  To me, that is not a kind label for someone.  I will not force you to be tolerant.

Tolerantism in itself might feel nice.  Tolerantists want to ensure that we all get along, all respect one another and so forth.  I hope for that as well.  However, there is a difference between wanting people to get along, trying to convince them of your position, whatever it might be via solid argument and forcing them to be tolerant.  In order to force people to be tolerant, you must have no values of your own other than the goal of no values.  For to even force you to be tolerant, implies that I am imposing my values on you, my values of tolerance.  The value relativism that is enforced falls in on itself.  How can I be both tolerant and force you to be value relative?  How can I say values are relative and force you to be tolerant?  It sounds nice, but the end result is no values.  So in reality tolerantism in the name of harmony forces people to have no positions, no values, no morality.

In spite of what you might think, our government is not in favor of tolerantism because it does not believe in value relativity.  I was just in Seattle.  I promise you that I feel that I have a right to park where I want, and the government should not force me to not park where they want (I hold this value pretty much). But if I don't follow the signs that are everywhere, I will get a ticket and will have to pay it.  They do not believe in value relativism.  Most times I will surrender to their lack of tolerance of my parking values.  But there are also times when I will not surrender to their lack of tolerance.  I would say there are also times when I will surrender to their forced tolerantism and there are times when I will not surrender to their forced tolerantism.  The myriad issues to which this applies, political and social, surround us in this present time.  Increasingly because of the lack of values in our government and social institutions, I am being forced to engage in what Foucault calls "acts of insubordination" because I do not believe in tolerantism and what it attempts to do to me and other people who have values.

Right now in our society there are a variety of issues that are currently on the table.  As a Christian, my views are immediately suspect, are a lightning rod for attack because I have taken solid positions, I stand for a particular morality, I believe there is such a thing as right and wrong.  Those of us who have taken moral positions are criticized by those who may not have, as being intolerant.  Interestingly, their intolerance of both me and my positions are sanctioned whereas my intolerance of their position(s) is not sanctioned because values whatever they may be result in intolerance. 

Have Christians been intolerant or continue to be intolerant.  Of course they have an are.  However, interestingly the Judeo-Christian ethic, that was the basis of much of what America is, allows for dissent.  To borrow a quote from the Matrix,
"Damn it Morpheus, not everyone believes what you believe"
"My beliefs do not require them to" (interchange between jason Lock and Morpheus)
A critical aspect of the Christian position is choice.  People are able to choose God or not choose Him.  The lack of choice is not a Christian principle at the most basic level. 

So for people to impose their position on others, even if, or especially if it is a position of tolerance is not a Christian principle.

Now clearly I will advocate for laws that support my position.  In these and other areas I will engage in dialogue to try to convince others of my position.  I will win and I will loose.  I will choose to follow what is imposed upon me and at times I won't.  It is interesting in our time that our own federal government will choose which laws it will follow and which it will not.  I don't entirely like that, but they have on some level opened the door for people of principle to do the same.

McNair

Social genocide

Joseph Barry is a student in the Disability Studies MA program at Cal Baptist university.  He's a sharp guy.  In a recent paper, he wrote the following.

Wolfensberger states, "We need to take a stand against the genocides of our time" (p. 101).  Not only should we take a stand against the documented genocides of past and present, but we should also continue to stand against the social genocides that exist as well.  The placement of values on persons with disabilities based on their disability status and the resulting objectification of them continues to have damaging effects on such persons.  The Church can be a leader or a hindrance in this battle and its role cannot be under emphasized.  Not only should all of us address basic issues one at a time, we should do so without wasting another minute." (Barry, J. Objectification and Value Assignment: Christian Responses to Disability, 2012).

Barry's statement is perceptive and powerful on so many levels.  We typically think of genocide as the outright taking of life, but the term might be tweaked in the manner in which he did.  Social genocide is a form of life taking that too many societies either overtly or purposefully have participated in.  Clearly I should do what I can to influence society such that it doesn't destroy people socially.  I need to do that.
But his comment about the church is straightforward.  The church can be a leader or a hindrance.  I believe at times it has been both.  I believe now it is being both.  The first step in change is awareness.  I have often stated that the first step in churches developing what has been called disability ministry is repentence.  I don't want to be a part of the problem.

I am reminded of the Luke 14 passage about the master telling the servant "Go out to the roads and contry lanes and make them dome in, so that my house will be full."  Earlier the master has said, "Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame."  The servant is told to make them come in (other versions say compel them to come in).  Perhaps they need to be made or compelled because they have been the perennial victims of social genocide.  How many times must I be killed socially before I no longer believe you?  Or perhaps I am just socially dead and need to be awakened socially in order to drag my socially deadened self to a place where there is social life.

If someone were to look at your life, would you be on the side of the social killers or the social life givers?

McNair

Lausanne Movement - Global Conversation Project

Received this as an email today from my colleague, Brian McKinney at Joni and Friends.
Check out the free account option and join the conversation!

"Beginning today, Joni and Friends will be initiating a month-long conversation on the website of The Lausanne Movement – an organization dedicated to international evangelization – focusing on evangelism to people with disabilities. The Global Conversation Project is designed to spur the local church into action and to emphasize selected portions of the Cape Town Commitment, which resulted from the Third Lausanne Congress on World Evangelization held in Cape Town, South Africa, in 2010. 

“We at Joni and Friends are passionate about taking the Gospel to people with disabilities, and we want to highlight the section of the Cape Town Commitment called ‘Christ’s Peace for People with Disabilities’ during this month,” said ministry founder and CEO Joni Eareckson Tada, who has for many years served as senior associate on disability concerns for the Lausanne Movement." 

"The Global Conversation Project is designed to get Christians all over the world involved in discussion on issues that require a global response. Conversations are conducted in eight different languages so that individuals from many nations can be involved. This week’s focus is “A Culture of Life Ethic“ featuring Joni Eareckson Tada’s acceptance speech, “Sanctity of Life and Disability,” which she gave upon receiving the Wilberforce Award at the Wilberforce Forum on March 30. Following Joni's speech are two response articles by Dr. Kathy McReynolds, Director of Academic Studies for the Joni and Friends Christian Institute on Disability, and Dr. Rick Langer, Biola University’s Talbot School of Theology professor with a focus on the integration of faith and learning. Sign up for a free account to get involved and enter the global conversation and involve all your “friends” and “followers” on social media!"

Culture by exclusion

When experts in disability studies discuss disability as a concept, they will at times discuss various models.  Minimally there will be three; the medical model, the moral model and the social model.  In both the medical and moral models, disability is totally focussed on the individual.  The medical model largely sees someone with an impairment as someone to be healed or corrected.  You own your impairment and my interactions with you are geared toward addressing your problem.  The moral model says that your impairment is due to something that you or your family or parents did.  You are to blame for this thing called impairment that has happened in your life.

If we believe either of these models are the reality, it will cause us to do things in relation to people with impairments in particular ways.  Chances are, one aspect of treatment will  be segregation.  As a student of mine, Sarah Slayman, once wrote in a paper, "Segregation centers disability within the individual."  If I follow one of these two models (medical, moral) I feel limited responsibility toward the person with the impairment, other than perhaps, some sort of therapeutic or rehabilitation based interactions.  Your life experience with an impairment has nothing to do with me.  So I even perceive my segregation of you, on the basis of your impairment, is based on something about you not something about me.

The model that emerged in reaction to the medical and moral models was the social model which takes the perspective that disability is not due to impairment but is entirely based in society.  Disability is actually the result of societal response to impairment.  It is not difficult to make the connection between how those with some form of impairment might feel in reaction to the medical or moral models and the treatment that followed and the reaction of saying that the entire experience of disability is caused by the environment. 

The connection between these ideas and the church is that if I segregate persons with disabilities, I am once again, centering disability within the individual.  I create a somewhat new class of people called people with an impairment, who are a culture to themselves.  If they are a culture to themselves, it is because the larger culture(s) have isolated them to the point that they find themselves together in an isolated group.  I may find myself as a member of a culture of excluded people, my characteristic being society's reaction to my impairment."  This experience, particularly from a Christian perspective, should not be sufficient to isolate me. Culture by exclusion is not something to be celebrated.  I make you become your own culture by distancing you from myself.   The excluded culture's characteristic being something imposed upon them by the dominant culture in more of a  moral model kind of way in response to a personal characteristic.  If we then celebrate the excluded group by providing ministry to them on the basis of their "culture" we support the devaluation and segregation by society.  In order to fight culture by exclusion, we must instead refuse to recognize the culture by exclusion and instead insist that we are one in Christ.

We therefore need to be exceedingly careful if we are involved in any activity that segregates people on the basis of any characteristic.  When we do so, we are saying that a person's characteristic and their life experience as a result of that characteristic totally resides within them and that we agree with society's way of interacting with them and isolation of them.

McNair

Questions and answers about friendship

5 questions…
How would you define friendship and the relation of this definition to the lives of individuals with developmental disabilities?

There are many definitions of “friendship.”  Miriam-Webster says, “one attached to another by affection or esteem.”  In relation to individuals with developmental disabilities, I would argue for the addition of the phrase that one “chooses” to be attached to another by affection or esteem verses one who “is paid” to be attached to another.  If I choose to be with you, I may be your friend.  If I am paid to be with you, I may be friendly, but under this definition I am not your friend.  There is a huge difference between being paid to do something and choosing to do something.  This is not to imply that human service workers are unkind, are unfriendly or are even unprofessional.  It is simply to say that there is a big difference between someone who is paid to be with me and someone who chooses to be with me.

How might friendship be used as a measure of the community integration of individuals with developmental disabilities?

There are several criteria that might be used to define community integration.  These could include physical integration and social integration.  It is impossible for someone to be socially integrated with others without some degree of physical integration.  Yes there are the social relationships which might occur via the use of technology, however, these types of social interaction are often not accessible to individuals with developmental disabilities because of the nature of their disabilities.  For one to be integrated into a community, most often the person needs to be physically present in that community.  Even if a person is physically integrated into a community, they still might not be socially integrated.  This has been seen in relation to integration between persons of different ethnic groups who, although they might be present physically in the same community, are not socially integrated.  Few people would look at the simple presence of a group home in a community as evidence that those living in the group home are socially integrated with their neighbors and those living on their street.  However, if an individual living in a group home could name specific individuals who are their neighbors, describe events that they participated in with neighbors (birthday parties, barbeques, etc.), talk about times in which neighbors came by for coffee, etc., one would then probably agree that those who live in the group home in the neighborhood are actually socially integrated into the community.

One might also look at participation in other activities of the larger community in terms of social events, knowing names of community members with whom one has a relationship, local stores or restaurants that have been visited, etc.  Each of these imply that community participation in the form of the activities that might indicate friendship has developed.  If I know your name, chances are that I have had ongoing interactions with you.  If I know the name of a restaurant, chances are that I might have visited that restaurant with friends, etc.  If I know the name of a particular faith group in the community, chances are that I have attended that group, know the practices of the group and know members of that group.

One other criteria might be the degree to which I am known by members of the community.  For example, if a group of people who are not paid to be with me know my name, my interests, my favorite food, my birthdate, etc., this would integrate that on some level they are my friends and on some level I experience integration with the community of which those individuals are a member.

 

What is the relationship between community integration, friendship and a “real” life?

It would be the unusual person who would be considered integrated into a community if the only friends that that individual had were persons who were either 1) paid to be with them, to be in their network, or 2) simply a member of a group defined by the services they needed by a governmental agency.  This is not to diminish either the caring and professionalism of those paid to work with individuals with disabilities, or the importance of friendship among those with disabilities.  It is simply to state that to truly be integrated within a community, there probably should be some non-zero chance that a person could have a relationship with people who are not residents of their adult living facility, workshop, or other government provided service.  They are simply other community members who are not regulated in any significant way by state agencies.  People who choose to have a relationship with someone simply because they see them as interesting people, worthy of friendship.

                                                                                                                                                        Where might people with disabilities go to find typically developing friends/peers in the community?

The short answer to this question is that they would go to the same places that anyone would go to develop friendships.  However, because of the regulated nature of the lives of individuals with developmental disabilities, there is the need for those doing the regulation to facilitate opportunities for natural relationships with community members. 

One place for potential relationships is with the faith group choice of the individual with disabilities.  Those in human services need to understand that 1) people have the right to such participation, 2) they should be provided a choice for the group they would choose to participate in, and 3) this opportunity impacts the manner in which support plans are either developed or understood.  Regarding number three, if a person will only have the opportunity for faith group participation if it is written in their plan, then their choice is minimized by those making plans for them.  If in planning, this form of community participation is not considered, chances are there will be little opportunity for this form of community participation in the future.  It is recommended that the potential for faith participation be a part of every plan.  Not that all would choose this option, but that at least this form of participation would not be restricted by virtue of the fact that it is not in an individual’s plan.

Second are participation in various community settings were people congregate such as work out facilities, bowling alleys, and various social groups.  There is at least the potential that people with disabilities might meet community members in these settings as they would be gathering with others having a common interest.

                                                                                                                                                                 What is the responsibility of the case worker, independent living provider and others in paid positions in the life of a person with developmental disabilities to facilitate the development of friendships?

Because of the regulated nature of the lives of people with developmental disabilities, aspects of life which might occur more naturally for those who are not regulated must be facilitated.  Those without developmental disabilities, move about the community in self-directed ways.  They visit settings they desire to, choose friendships and relationships as they please, and participate in social groups that appeal to them.  These same opportunities are minimized when one is regulated by agencies restricted to some degree by a menu of services that they are permitted to provide.  So those with responsibility must walk a line between free access to the community for those in their care, including the potential risks that any person faces who has access to the community, and limiting access to the community with the concomitant removal of real life opportunities that come with that regulation.  While service providers should perhaps not provide unlimited access to the community on one level, there needs to be reasonable access such that people experience similar risks that typical community members face.  The only way to completely protect someone is to totally restrict their community involvement to little or nothing.  However, a completely protected life is not a normal life and it will be difficult for people to develop natural relationships with community members if community access is regulated to the point that there is little or no involvement with regular community members.

"What would you change about yourself?"

If the average person were to look upon someone with an intellectual disability, they would see that impairment as perhaps the defining characteristic of that individual's life.  They would also, no doubt, see that impairment in myriad negative ways.  Hence the fervor for prenatal diagnosis and abortion of people having the characteristic of intellectual impairment.  One only needs to consider the "impairment" down syndrome to see this fervor.  But, how do people who have this characteristic called intellectual disability feel about themselves? 
Surely they would agree with those with "normal" intelligence that their lives are terrible because they have that characteristic. 
Surely they would do anything to not have that characteristic. 
Surely they see themselves as the pitiable souls that they are.

Or do they?

You know, it would be instructive to ask them how they feel about themselves.  If we were willing to understand how they feel about their lives, could that possibly impact how those of us with typical intellect might also feel about them?  One would hope so. Think about other people who have been or continue to be devalued.  As a man, should I simply project on women how I think they feel about their lives because they are not men?  Surely they all wish they were men like me.  How about people of different races or ethnicities than myself.  Should I project on them how I think they feel about their lives because they are not the same color as I am.  Surely they all wish they were the same color as me.  Those two statements are very offensive and no one in their right mind would state them. 

However, those of us without intellectual impairments think we know how those with intellectual impairments think about themselves.  We think we know how much they would desire to be different then they are.  We can get away with those projections on this particular devalued group, because it is OK to see people with disabilities in a negative light.  It is OK to project my perceptions on them.  It is OK even to take their lives on the basis of my projections of who I think they are and how I think they perceive themselves.  I can't get away with such pronouncements in the other areas mentioned above, but regarding people with disabilities there is no condenmation for my perceptions.  Why?
Obviously they are suffering, right?
Obviously they wish they were more like me, right?
Obviously they would choose nonexistence over being born or living with an intellectual disability, right?
I mean it is obvious, right?

If you really think those things, click on the link below and have your eyes opened.
http://sproutflix.org/content/one-question

 

I wish we would listen to people to find out what they think instead of projecting on them what we think.

May God forgive us...

 

McNair

Disability and the Church

The Disability Studies Institute of California Baptist University is interested in creating a snapshot of the current status of the Christian community's interaction with people with disabilities. To that end, a survey has been created to elicit input from various parties. This brief survey is available at http://www.zoomerang.com/Survey/WEB22EPTEFHACK . We are hoping that individuals and representatives of church, parachurch organizations, or other Christian faith-based organizations will participate in this study by completing the survey. It is our desire to have as broad a representation
as possible so please forward this survey link to anyone who might be interested in being involved. We appreciate your participation in this foundational study of the Christian community's interaction with people with disabilities.
Sincerely,

George White
Jeff McNair

6 minutes

http://www.youtube.com/watch?v=R0MZCrMlUl4&sns=fb

A friend of mine sent me this link.  It is very simple, nothing special going on in the video.  But it is also incredibly powerful in its simplicity.

The video shows a boy in a wheelchair in a crowd of children.  He is just sitting there, looking around, perhaps attempting to get attention with his looks at the other children.  However, for the entire video, no one looks at him, interacts with him, talks to him.  He might as well be a piece of furniture.

In the society of that school, that classroom, he is ignored.  I guess it is OK to ignore someone like him.  Perhaps he is perceived as having nothing to offer in terms of friendship.  Perhaps he is deemed to be too difficult to communicate with as he does use some sign language at the end of the video.  It appears obvious that he can understand speech from the way he interacts with the person who speaks with him briefly at the end.

We only see the boy for 6 minutes, and my hope, my prayer is that this was an unusual occurrance.  But I suspect it isn't, as society is reflected in that 6 minutes.  I don't accuse the children or even the teachers because I know how I am.  I know how I get busy and ignore those around me.  I have a friend with whom I should spend more time and he always provides my excuse for me when we are together.  "I know you are busy" he says, forgiving me for not being present.  Easy for me to forgive myself when I am not present to others who would appreciate my presence.

But when you see it portrayed as it is in this brief video, and see yourself in those ignoring the boy, it is difficult to forgive yourself.  Not a word, kind or otherwise.  Not a look, not an invitation to do what they were doing.  Nothing.  As if he wasn't there.  He might as well not be there from the perspective of those in that enviornment.

I, we have to do better.
McNair

a life filled with "almost friends"

That is the phrase one of my students in the California Baptist University's Disability Studies MA program, Jennifer Baca, used to describe the too often experience of people with disabilities.  It is a powerful phrase, that is damning in its implications.  Many people who experience disability have lives filled with people who are nice, perhaps because they are paid to be caretakers, or social workers, or teachers or some other role.  They are nice and perhaps they are even friendly.  But they are NOT friends.  If I am a person with a disability I need to understand that...

• People who are paid to be with me are not my friends. 
• People in my life who are forbidden to be my friend by their organization, their profession, independent of how nice they are to me, are not my friends. 
•  Experts who interact with me when they are on the clock and will not or cannot visit me when they are not on the clock are not my friends.
• People who worked with me, then worked with someone else, or changed jobs but do not now interact with me are not my friends.

All of these people are "almost friends." 
But there is a huge difference between friends and almost friends.

• Almost friends interact with me on the basis of a menu of services.
• Almost friends see me as a part of their caseload.
• Almost friends do not choose me.
• Almost friends don't recognize the potential damage they do to me by submitting to human service standards that provide a distance.

I would hope that almost friends would recognize who they themselves are, but they actually don't.  In reality, they cheapen friendship by referring to themselves as my friends, they cheapen me by thinking that I need them to be almost friends in my life perhaps because they either don't think I can have real friends, or are perhaps so unaware of my life situation that don't know that I really desire true friends.  I wish almost friends would help me find real friends and not be confused about who they are.  They may be good and caring and helpful and professional.  But that doesn't mean they are my friends, and although I need good, caring, helpful, professionals in my life, what I most need is friends.  It seems my almost friends do not understand that.

My almost friends don't seem to get that.

McNair

The Bible and people with severe intellectual impairments

"Should we teach the Bible to those with severe cognitive disabilities?" is a question that was asked in a weblog entitled "The Works of God." I really appreciate this blog raising this question not because it necessarily is a question in my mind, but because it is the question in too many pastor's minds (assuming the question is even considerd).

I remember a pastor once saying to me,

"No one stays awake at night thinking of how to teach the Bible to people with intellectual disabilities."

I responded, "I do!"

The larger question is how we facilitate faith development in individuals with severe intellectual disabilities and are the current content based strategies for faith development of those with and without disabilities actually doing what we think they are doing. The integration of people with and without disabilities is an important step in the faith development to all.
Anyway, I was invited to provide a response to this posting for the Christian Post, and they did a good job editing my response. You can see it here Christian Post link .
The critical question in faith development, Bible "learning" is not whether, but how. Additionally as I have stated elsewhere, the changes that need to come to the church that would facilitate faith development for all, will largely result from a change in the entire church environment, not just in figuring out some way to teach the Bible to people with intellectual disabilities. The discussion begins with the statement, "Yes, we want people with severe intellectual disabilities integrated into the church in as many ways as possible."

Once we make that statement our real goal, we will find that we will change our structures such that Bible instruction of persons with disabilities is no longer something else we do, it becomes a significant aspect of who we are. We, the church body have changed from being a church to the Body of Christ with all that that entails.

At the moment, I am not sure we really want to become the Body of Christ because we will have to change the way we do things such that we respect people we have devalued.

This morning, I was part of a meeting that began with a devotion from James 2 about favoritism largely on the basis of wealth/poverty issues. The same applies with impairment/disability issues. For me to ask the question, "Should we teach the Bible to those with severe cognitive disabilities?" on some level implies that I am justifying what I am not doing. On some level it is a way of saying "I don't want to change." It is a way of saying, "I don't want to be inconvenienced." However, if it is an honest question that I want an answer to, then perhaps I should be asking, "How can I teach the Bible with those with severe cognitive disabilities?" It is easier to try every instructional approach and even perhaps fail then it is to prove that people cannot be taught the Bible. We are way too early in this awakening of the church to the presence of persons with disabilities in the community for us to excuse ourselves from facilitating faith development in those who we have ignored.

McNair