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

Underestimating others

I had an interesting experience yesterday in our Light and Power class.  I was sitting with a friend, perhaps the most severely impaired member of our group.  He would be considered as having a severe intellectual disability as he is largely nonverbal mostly just sitting, occasionally stating single words like "presents" or "pizza" or something similar.  It would be easy to think he is oblivious to what is occurring in the class whether it be Bible lessons, or singing, or other activities that occur during each session.

Yesterday during prayer, a woman who was praying said something to the effect, "Protect our friend in the hospital..."  My head was bowed (I was praying).  He reached over to me, lifted up my chin to get my attention and pointed to the crook in his arm.  The way he did it, I knew exactly what he was trying to communicate; the experience of getting a needle in his arm for taking blood.  He pointed to his arm once again, and held his hand up in my face and shook it to say "No."  I said to him, "Are you talking about the hospital?"  He responded by pointing like a needle in his arm and again shaking his open hand in my face to say no.  "You don't like the hospital do you?"  I asked.  He shook his hand in my face again, agreeing "No."  "Yeah I don't like the hospital either" I replied.

That interaction struck me in that in all the verbiage that was occurring in the class between the teacher talking, the others in the group talking and the actual prayer, he picked out a word that he was familiar with and had an immediate communicative response.  My assumption was that he was not attending, perhaps my perception was that he was unable to attend.  He totally blew me out of the water by attending, recognizing a concept that was presented, gaining my attention, and communicating to me what he thought about the concept.  Hopefully, I will not underestimate him again. 

McNair

Pastor of "Disability ministry"

Part 1:  What would be the role of a full time pastor of disability ministry?

A major part of the job would be to change the environment around individuals with disabilities, in other words, the church.  The starting point might be to create a place where people are included, however, the goal would be to remove exclusion from existing programs and structures.  There is a huge philosophical difference between these two activities.  One says that a person doesn't fit in because of their characteristics.  The other says that a person doesn't fit in because of the characteristics of the enviornment.  Typically the expectation is that the individual will change to better fit the enviornment.  They will develop better social skills, etc. such that they would be accepted by the larger enviornment, the social setting.  There is not a lot of impetus on the environment to change.  However, it is largely the enviornment that is in need of changing, even more than the individual who has the impairment.  The church environment should be one that to the greatest extent possible does not reflect the socially constructed notions of disability that are reflected in Wolfensberger's 18 wounds.  If the enviornment has wrong notions about people with impairments which are reflected in practices typical of society, then the environment needs to reflect more correct notions of who people with impairments are and reflect those notions in their practice.  Imagine if a white woman went to a predominantly black church or a black woman went to a predominatly white church.  Upon her arrival, the ministry staff approached the woman and said, "We are so glad you are here!  We have a ministry specifically designed for women who are your color!  All the people who are your skin color meet over there in the 'Your skin color' ministry."  You would respond that this is ridiculous and you would be right.  Skin color is an irrelevant characteristic when it comes to teaching people about the Bible and engaging in faith development.  A segregated ministry for women with a skin color different then the majority of the women in the church reflects more about the flawed thinking of the church then it does about the relevance of the skin color of the woman.  Sure there are things that have become relevant about skin color because of the way people of certain ethnicities have been socially constructed.  People have experienced privilege and discrimination on the basis of their skin color.  However, once you enter a church, you shouldn't experience privilege or discrimination on the basis of your skin color.  The same holds for individuals with disabilities.  My life in society will be different if I experience a bodily impairment of some kind.  However, the socially constructed perceptions of my disability shouldn't find their way into the doors of a Christian church.  I shoudn't experience discrimination in a church on the basis of disability.  The fact that I do, implies the degree of change that needs to occur within that environment.  That environmental change should be a major, perhaps THE major focus of the pastor of disability ministry.  They should be agents of change above all else.  They should be living out, teaching about, advocating for a replacement narrative, based on the Bible to replace the socially constructed, pervasive narrative about who people experiencing physical impairments are.

A second area of emphasis related to the first, is integration, friendship development and the changes the personal involvement and shared lives bring.  If people were truly interested in supporting devalued people, if church members were looking for devalued people and bring them into the church, into relationship, then there might not be the need for a full time person.  The fact that there is a need is somewhat of an indictment of rank and file church members who are NOT developing friendships, NOT seeking out devalued people, NOT advocating changing church structures such that people with disabilities would be included in the larger Body of Christ.  If we were doing that, there wouldn't be the need so much for paid staff.  Kathi and I recently spoke to the elder board at our church.  We actually asked about the possibility of hiring a full time pastor of disabiltiy ministry.  One of the elders in the course of the discussion, asked whether we were training another couple to take our place should we move or be incapacitated to do the ministry.  At first, I thought "You don't look to the women's pastor or the junior high pastor or the college pastor to find a person within the congregation whom they can train as their replacement.  Why would you look to us to do that?"  Whether his comment was intentionally related to the naturalness of our "ministry" staffed entirely by volunteers as a perhaps better model, I am not sure.  But it has since given me pause.  We wanted a full time pastor because of the committment that funding implies on the part of the church.  However, perhaps there are other ways churches can make a committment to ministry without hiring a full time pastor.  A part of me thinks that the hiring of of full time pastoral staff to some degree simply removes the responsibility of the average congregational member from doing many of the things they should.  Additionally, if a full time pastor of disability ministry was the one doing all the work of ministry to people experiencing disability within a church, it would be another example of a person who is only in the lives of a person with a disability because they are paid to do so (see Wolfensberger's wound #9) only in this case it is for the cause of "ministry."  At least the hope is that this paid person would recognize the critical need for natural friendships and facilitate those within the social environment of the Church.  From an evaluative perspective, if indivuals with disabilties attending a church do not have natural friendships with members of the church, the pastor of disability ministry is arguably NOT doing their job.  If the only interaction that individuals with disabilities have with the larger congregation is the once per week chance meeting on Sunday morning with no social interaction outside of the church setting, then the pastor of disabiltiy ministry may be doing their job, but they are NOT doing a very good job.  This aspect of "disability ministry" is hard because if people wanted relationships with persons with disabilities they would have those relationships.  That they do not have such relationships communicates that they do not see those relationships as desirable or necessary TO THEIR OWN LIVES.  The understanding of the Body of Christ, and of love among other things are then the foci of efforts of the pastor of disability ministry.

So thus far, we have described the most critical aspects of ministry and we haven't cracked a Bible with a person with a disability.  Should someone not be able to understand the scriptures as presented to the larger congregation, the next critical work would be to facilitate Biblical study, faith development and teaching of that group of people.  This will imply the development of a subenvironment within the church for people with this pedagogical need.  Pastors of disability ministry should know what they are doing from a faith development perspective, understand what the goal is for a particular person with an intellectual disability for example and be discipling that individual to move forward in their faith.  They should know what to do for an autistic child, or an adult with severe intellectual disabilities, or mental illness.  In each of these cases, the approach for faith development would be different.  To a large degree it would be inclusive, but to some degree the faith development approach might be different.  The pastor should understand the samenesses and differences and develop those, constantly second guessing himself when segregation occurs in any form.

More to come.

McNair

Providing what is needed

I heard a story recently about an interaction a man had with his son.  His son experienced many disabilities including autism and epilepsy.  One day as they were driving together, the son who is quite bright said to his father,

"I wish you could understand what is going on inside of me, inside of my head."
The father's interest was piqued.  "Can you try to explain to me what it is you are thinking about?  What is going on inside of you?"
The son replied, "You treat me as if I have a behavior problem, but what I have is mental illness."
The fathers eyes were opened and his relationship with his son changed dramatically.

There is a difference in how we interact with people when our expectations are in line with their abilities.  You have the right to expect me to act in a particular manner, because my thinking is not impaired by mental illness.  However, if I am experiencing mental illness, now your expectations will radically change.  You recognize that there are things I can be expected to do, to understand, ways in which I will change, and many other ways in which I cannot change even though it might be my desire to do so.  The result is that although you still have expectations for me, you will have to change your expectations of me.  You can try to punish me in an effort to change me, and perhaps some kind of change might come from that, however, you aren't going to eliminate my mental illness, and will probably only exacerbate it through punishment.  Your punishment will seem to me to be irrational and random.

Too often people who either do not have a child with a disability, do not experience disability themselves, or through their choices have no friends who experience disability.  But will then act as if they can speak into the lives of those who do have those experiences, as if they know something.  Well they shouldn't because they don't. 

If you want to speak into the life of a family of a child with a disability, here are some things you might say.

Is there anything I can do to help you?
I would love to keep an eye on your child for you sometime.
Is your family available for dinner sometime?
We are having some families over for a big Christmas party and would love to have you bring your family!

Begin by choosing an individual or family as friends.  You will then learn what you might do to assist and it will probably be something simple, but different from what you had expected.

McNair

Weird glasses people

About 5 years ago, I wrote a blog entry that demonstrated an interaction between a person who wears glasses and one who does not, illustrating the manner in which people exeriencing disabilities are often treated. http://disabledchristianity.blogspot.com/2008/01/conversation-with-man-with-glasses.html

A friend from Australia, Lindsay Gale, who works for the Luke 14 project there, told me how they had been using the dialogue in a skit format.  But imagine my surprise to find the skit had been made into a short video!  Check it out.  It is a lot of fun and they really do a wonderful job!

http://www.youtube.com/watch?v=PpuDiRvgYMU

McNair

Toby's "commercial"

A friend of mine made this "commercial". 
Please take a minute and check it out.
http://www.youtube.com/watch?v=CRigofKAeZU&feature=feedu

McNair

Form follows function

According to wikipedia, the phrase "form follows function" originates from Louis Sullivan in 1896.

The idea was presented in a quote that says,
It is the pervading law of all things organic and inorganic. 
Of all things physical and metaphysical. 
Of all things human and all things super-human,
Of all true manifestations of the head,
Of the heart, of the soul,
That the life is recignizable in its expression,
That aform ever follows function.
This is the law.

The friend who shared this with me was considering this idea in the light of accessible architecture.  So the form of say, a ramp, follows the function of allowing access to a structure for people who use wheelchairs.  If their is not a ramp, it implies that the function of the building either did or does not include the presence of persons who use wheelchairs, because the form would not allow their presence.

As the quote indicates, however, form and function transcend notions of architecture.  Forms that we see in policy, in program, in social structures, in many ways reflect the function of those.  We can see that people are not accepted, for example, in some social settings, perhaps on some level at least because the forms of those settings were developed with out people having a particular characteristic present.  If people try to be a part of that setting, all will find difficulty because the forms expressed were designed without individuals having that particular characteristic comprising the function, functioning within that environment.

When there are changes in the function, say indivuals with disabilities are present, the form must change: be it the form of social gathering, the form of human interaction, etc.  Dissonance within a social setting can be reflective of the need for a change in form or function.

There is a lesson here for the church.  If there is difficulty integrating individuals with disabilities within the church, it is likely a problem of the form that resulted from the perceived function.  The forms of the church were designed or developed with a different function, i.e. not including people with disabilities.  As the function changes where people with disabilities are now present, the form will also need to change to some degree, if only in the physical structures (ramps, hearing devices, sign language interpreters).

Likely when there is less difficulty with integrating people with disabilities, forms have changed reflecting changed function.

McNair

So what do you do?

I am reading Desmond Tutu's book No Future without Forgiveness, It is an amazing discussion of the Truth and Reconciliation Commission which he directed as apartheid was dismantled.  Perhaps I will share some of the deep lessons about forgiveness in a later post, relating them to disability issues.  The excellent book has resurrected many memories of a trip I took to South Africa about 5 years ago.  Thought I would post a poem I wrote back then as I tried to understand what I observed there.

So what do you do?
A reflection on South Africa

by Jeff McNair
So what do you do with the things that you see?
When natural beauty cannot hide the disparity. False Bay is aptly named.
And the love in their voices cannot mask an African’s plight:
the poor are the Black and the rich are the White.

So what do you do when people beg just for food?
In the shadow of cities and wealth so lewd
that embarrassed, you hide your affluence: not a motive of greed,
but a pleading desire to lie that “I am...I would be different.”

So what do you do when you give a beggar 10 rand ($1.65) and he breaks down weeping?
In worried humility, he creeping up to ask the time.
Such generosity reduces a man, crumbles him in tears.
We stand aghast, in wonder, as a beggar becomes a human and then becomes dear.

So what do you do as you take in the sights
knowing the person who drives you has never seen them?
He genially works nights for a living so basic, that you cannot believe
his friendliness is little more than an attempt to deceive.

So what do you do when driving a cab is a better life?
Thousands of miles from Dakar to Cape Town to drive a cab
is described, with a grateful, straight face, as a better life.
He pulls on the emergency brake, to stop at a light. “Mother is proud of me!”

So what do you do when Blacks and Coloreds and Whites are taught to say
“We’re all the same”?
While a “you know who” stands on each corner to guard those with wealth
as they scurry in safety by protectors on substandard wage,
who must see there’s no sameness from their economic cage.

So what do you do when you look in the eyes of a poor humanitarian?
Serving one’s people fuels the lifeblood that courses through proud veins.
“Will you be my partner?” the saint asks the rich man with averted eyes,
neither the rich nor the saint comprehending their respective guise.

So what do you do when leaders that Mandella’s wise plan brought to power
are kings of corruption?
Who in spite of their efforts cannot out sin, as the Whites’ “moral” replacement:
unquenchable greed and power murderous racism’s alternative.

So what do you do when the labor’s so cheap
that someone stands all day to keep you from pushing the elevator button?
With a kind word and friendly smile
protecting his job from the next in line.

So what do you do when you are back in the states
trying not to shake the memory of difference that grates
on your awakened, helpless sensibilities and uneasy ambiguity
destined to be gradually forgotten
in a file of pictures from a trip sometime back?

So tell me a story of a man and a people
who fought and gained freedom
from racism taken to the ridiculous extremes
of the color of bread.

Tell me they now live in a place just, as equals.
Because the story I heard, is perhaps better a sequel
where racism holds on by a rope not a thread
and has feigned its demise but is not as yet dead.

Prove to me that “We are all the same” by your lives,
as I am unconvinced by your blessed words.

Opportunities and realities

Opportunities abound for the possibility of doing good. The question is will we see those opportunities, or be distracted by some comparative trivia, some historical reason for resisting change? The "we have always done it this way" as foolish as it sounds remains a powerful argument. We resist change because change moves us out of our current positions of comfort, or prestige, or simple thought processes. "If people with disabilities are suddenly worth my effort, what does that say about my lack of caring in the past?" Well, it says you were uncaring IN THE PAST. The real question is, will you be uncaring IN THE FUTURE?

But courage is needed and I don't mean to demean that courage. Take my favorite movie, for instance (although it is a bad comparison). The reason I love the movie Babe, is not because there are singing pigs and crazy ducks. It is the story of a man, Farmer Hoggett (I think), who saw something that no one else saw. A pig who could herd sheep. He then had the courage to enter the pig in a herding contest, to the laughter and demeaning of the crowd. At the end, the deriders are speechless as they finally see what he had seen. But it takes real courage to act on something that you see, when you know that most others don't see it. If the pig had not herded the sheep before the crowd, the farmer still would have been right, he just would have lost that particular opportunity to convince the crowd of what he had seen, of what he knew. He would have been ridiculed, but he would have been right.

We are facing those kinds of opportunities today. We see something that I am hopeful we can help others to see. If we fail, that does not mean that our vision of a church that includes persons with disabilities is not a glimpse of reality. It means that we were simply unable to convince those who need to be convinced of the opportunities that lie before them, before us. I must also realize that I must be subservient to my Master, the Lord, who might be saying that the timing is not his timing. I must submit my will to his.

McNair

St. Giles Church 9/10/06

I just discovered this post I had written on a trip to Scotland in 2006.  Never posted, I thought I would post it now.

I just got back from a wonderful conference in Aberdeen Scotland. While there, I sat in a church in Edinburgh called St. Giles Church and listened as a classical music group prepared for a concert later that night. I wrote the following as I sat there

In a reformation kind of way, I hope to open the church. Or perhaps, it is a total change. I want it to change its priorities, to change its practices to become something it has never entirely been before. It may be that the doors are open. But that only means that like a museum it has visiting hours. You sit in a church but you might as well be like an informaiton center about cultural silliness (as in the Tron center there in Edinburgh which was once a beautiful church and now is the shell of a beautiful church filled with a combination of a partially excavated floor and silly things about witches, etc.). But it does begin with openness, with business hours. Particularly business hours that don't exclude. But people can be those visiting a museum or those engaged. People who look around and tke picutres and leave, or people are aware of what a church actually is, how it differs from a museum. How congregational members differ from museum attendees or visitors. I don't concern myself with who or is not in the museum. Of course, I would like everyone to have the opportunity to enter.

My desire, however, with a church is to think about who is or isn't in attendance and wonder why. How is their presence or not a reflection of me, of us? Churches may move from churches to museums to buildings housing silliness very quickly (comparatively) and the reasons for this change can be knowable. In summary, it is linked to obedience. How interesting that so many churches here in Edinburgh are museums or restaurants or bars. One even houses a tall rock climbing wall. It is a city dedicated to the culture they have abandoned.

So I go into Tron square church to see what is in the dirt that the church stands on. If I look up, the stained glass reminds me of worship. I got to the church below Edinburgh Castle and eat at the "Carvary." How funny that Kathi misread it as "Calvary." How many of the population would have the vestiges of culture to catch the "joke."

May God continue to move us forward as a growing church.  The churches of Edinburgh are like the stumps of dead trees.  A remembrance of what might have been, what had begun, what had life but is now a dead, distant memory.

McNair

"Treat all people the same"

Imagine that was our creedo for the church. "We treat all people the same" but there are no women are in church. Would that be treating all people the same? Obviously not. So if we say we are treating everyone the same but certain groups are not present, that is probably a very good indication that we are NOT treating all people the same. How might it look if we were treating all people the same? Well, in many ways it would not look like it currently does simply because, in the case of people with various disabilities, they would be present in numbers reflecting the community. That they are not present indicates to me that we do not treat people the same. I also don't care if your church is largely comprised of white people, hispanic people, african people, asian people, it doesn't matter as most all of those groups of people are not treating people with disabilities the same as they would want to be treated within their own group or by other groups.

McNair

"Don't believe everything you think!"

One of my students, Jayson, in responding to a reading I had the class do, came up with this great statement... 

Don't believe everything you think!

It is such a great caution about living an unexamined life.  There are many things that we think and do that we really don't understand.  We have ideas about people or things that somehow are just a part of who we are and when we are in situations that call us to pull out that information, we do so without a lot of thought.  When we are challenged to consider our ideas, it can be painful because we find out how wrong or uninformed our ideas may be.

As an undergrad at Wheaton College, I was a TA in a class called Christ and Culture.  The major focus of the class for incoming freshmen was to challenge everything they believed about their Christian faith.  They often misunderstood thinking we were actually challenging their faith.  There was a lot of crying and questions like, "Why are you doing this?"  But the point was to make their faith THEIR faith.  They had been told things by their parents or others in their lives, but they hadn't investigated them for themselves.  "Why do you believe what you do?"  "Because my mom told me." May be a true response, but isn't necessarily a good response, particularly when you are confronted by the challenges of the world.  If you have come to an understanding of something because you have thought it through, that is much different from simply, lazily relying on something someone told you even if it was your mother.

I remember I once had a job at an industrial laundry in Atlantic City, NJ.  My boss was a great guy who was a Jehovah's Witness.  He challenged me as a young man on many positions of the Christian faith that differed from the Jehovah Witness faith.  "Why do you believe in the trinity?" he would ask.  "Why do you say Jesus is God?" both postions that he as a JW would not support.  I quickly realized that I had not done the required work to understand why I believed those things, and when challenged to find them in the Bible, as a young man, I couldn't do it.  I was simply relying on what I had been told.  Since then, I can easily support those positions from scripture, but it was my JW friend who challenged me to support my beliefs even though he didn't agree with them.

Social constructions of disability are the same kinds of ideas that people have that they have really not examined.  So, of course everybody with a disability thinks thus and so.  Of course they are all unhappy with their lives and so on and so on.  As a mentor professor once said to me about a conference speaker he had heard, "Unencumbered by knowledge, he speaks with great authority!"  That is the unexamined world of ideas that we carry around with us.

Now no one would (or should) come up to me and ask about economics.  However, I carry ideas about economics around in my head that I have heard or read somewhere that come out of my mouth every so often.  I can tell you that they are unexamined ideas.  They are largely unexamined because I have never taken the time (nor do I want to take the time) to understand more about economics.  I try real hard not to infuse my ideas about economics into conversations I am in if only because I would do little more than make myself look stupid if I were to offer my perspective.  However, in the world of disability, because it intersects with the life of so many different people in so many different ways, knowledge doesn't always accompany ideas.  I see it in "Christian" responses to people with disabilities, I see it in justifications for abortion or euthanasia, I see it in people projecting their ideas of what it would be like to have an impairment on others, I see it in the development of laws, I even see it in the definition some hold of what disability is.

So my caution is Jayson's caution..."Don't believe everything you think!"

McNair

Chickens and data based instruction

Something I wrote about 10 years back about data collection.  You can visit the actual website where it lives, if you want.  There is other information there about being data based as a teacher.
http://www.jeffmcnair.com/CalBaptist/CBUTransition/Transition/new_page_4.htm

There are several reasons why a teacher should take data on her students. Interestingly, they all seem to follow a chicken feeding model. Don’t ask why, just read on.
Instruction in a general education setting is pretty much a chicken feed model. That is, the food is tossed out to the chickens, and they eat it. In a general education setting, most often instruction is made to the group. Assistance is provided to individuals to some extent, however, simply due to the sheer numbers of students, individualized instruction is at a minimum.
Such is not the case with Special Education. The instruction in Special education is supposed to be individualized. Some chickens, for whatever reason, cannot feed themselves. As a result, you walk into the coop and see some very fat chickens, those who are thriving in that setting, and those who are sickly and scrawny. The idea behind individualized instruction is to work directly with those who become sick and scrawny under the traditional model of chicken feeding so that they too can put on a little weight.
The first reason for taking data then, is to monitor the progress of students who have had difficulty in the past in order to ensure that they are improving. Imagine that you are responsible for a group of about 25 chickens. You might consider yourself an entry level "chicken service worker." The director of the chicken coop comes by one day and you have the following conversation . . .


"Hello chicken service worker number one. How are the chickens doing?"
"They are doing great" you respond.
"Really?"
"Yeah, they are much better than they used to be. You should have seen them when I first got them!"
"Are they eating better?"
"Yeah, I feel like they are much better then they were."
"Why is that one chicken sleeping with his feet sticking straight up and his tongue hanging out?"
"I don’t know. He does that all the time. But he has made friends with a family of flies."
" . . .and several others seem awfully skinny. I have never seen chickens sit down for so long."
"You know, when they first came here, they used to run around like crazy. Now they sit like good little chickens."
"Prior to visiting your coop, I didn’t know chickens could sit. I’m not sure they are supposed to sit."
"They do in here."
"How much food have the scrawny ones been eating?"
"Oh, a lot."
"Have they been gaining any weight?"
"Yeah, I feel like they have been gaining quite a bit of weight."
"I think that chicken with the friends is dead."
"Really?"
"Those other skinny ones, they don’t look like they are getting enough to eat. Have you been keeping track of how much they eat?"
Pointing to his head, "I keep it all up here."
"You keep the weights of twenty-five chickens as well as their daily intake of food in your head? That's a lot of information. . . I can’t believe you are able to do that."
Yet as unbelievable as it sounds, there are teachers who have starving students, educationally, in their classrooms. Students are educationally dead, in their classrooms and they don’t know it because they are not collecting any data. They are using educational approaches which are not working and they are unaware.

A second reason for taking data, is to evaluate our own teaching. Just because a teacher is teaching doesn’t mean a student is learning. It is the teacher’s job to ensure that the student is learning. Very often, the reason that students do not learn is not because they are unable to learn. Rather, it is because we as teachers are unable to teach, or refuse to teach using best practices.


"Those chickens are really, I mean REALLY scrawny!"
"I feed them every day!"
"Are they eating it?"
Pause, "I feed them every day. I even use SCRAWNEX, a special feed for scrawny chickens. Like the add says, ‘scrawny today, chubby tomorrow’"
"Is is working?"
"We had a coop inservice which said that it is the best food for scrawny chickens."
" . . . and why are those straws sticking out of the water bowls."
"I thought I’d try something new. I covered up the water, except for the straws."
"Are the chickens getting enough water?"
"They sure peck at the straws a lot!"
". . . and you thought this was a good idea?"
"Do chickens have lips?"


Many teachers have no idea whether the approach they are using is working, for any or all of their students. Yet, they blindly continue on with what they are doing.

The systematic taking of data also ensures that students are given instruction relative to a specific objective every day, or as often as the objective or program demands. Back to the chickens . . .


"You know when you took this job, the idea was to keep the chickens healthy."
"I think I have tried to do that."
"The feeding objective assumes you will feed and water the chickens every day. Have you given them food and water every day."
"Well, there are other things I needed to work on which weren’t in the objectives."
"So what are you telling me? Please don’t tell me that little Winger is so skinny because you haven’t been feeding her every day."
"She got food. Nearly every day she got food, and water too, I think."
"You know, if you had been taking data, you would not only know whether or not she had been fed every day, the recording of the data point would have ensured that you feed her every day."


A final reason is to be able to document for others the progress students are making. Imagine the same conversation above, however, the chicken service worker has been taking data on her chickens.


"So, how are the chickens doing?"
"Pretty good. Did you know we went through five different types of food last season?"
"Really?"
"Yeah. I finally found one that Beaky could eat. She has gone from two to three pounds in the last two months."
"What about that chicken who is sleeping over there?"
"He might not be sleeping, I think he might be dead. I have tried the five different types of feed, and have delivered each of them using three different feeding techniques. But still, he won’t eat and hasn’t gained any weight."
"Did you give them enough time to work?"
"I can show you the graphs if you’d like."
"Well, I’m sorry to say that we can’t save all of them. But at least you have done your best. I may need to show your graphs to the coop director if he really is dead."


How many times has the discussion at an IEP meeting revolved around the changing of objectives which haven’t been met, and there is no mention of data. Teachers should be responsible for sharing the data which would minimally indicate the various approaches which have been tried, how long the approach was tried, the results of the attempts, as well as anecdotal notes which would indicate the next steps which should be taken or the next approaches to be tried. Unfortunately, it is suspected that the sharing of this level of information at an IEP meeting is the exception rather than the rule.

Why take data? As professionals in special education could we do any less?

Teachers who do not take data, should be guilty of malpractice not common practice.

Data collection as a human rights issue

Probably no one would argue that children having access to an education is a basic human rights issue.  However, I am wondering at what point the way in which that education is provided also becomes a human rights issue.  If the "education" either does not actually educate a child but instead simply babysits that child, is it still and education or is it now a denial of basic rights by deliberately wasting the child's time, by saying that the child is not worthy or not able to benefit from an education?  In addition, if specific training techniques are known, are proven to result in educational gains by a child, if a teacher refuses to practice these strategies, is that now a denial of rights?

With children with severe disabilities, the progress that students make is sometimes so slight, so minimal in terms of the gains, that they could be easily missed.  In actuality, perhaps the only way that gains can be observed is via the systematic taking of instructional data.  You see, a teacher may have 13 students in a classroom with perhaps 8 IEP objectives each.  If the teacher is not taking data on the student, they she is claiming to be able to monitor 104 (8x23) objectives, objectives that may only evidence tiny steps of progress, in her head.  This is ridiculous!  It is not possible.  It is only through systematic collection of data on student performance that a teacher has any idea of how a student is performing on instructional tasks.

The other day, I was in a classroom with a student teacher.  She is doing a good job as student teachers go.  She had been taking data on student performance in a relatively regular, systematic fashion.  I asked her, "How are your students performing on their tasks?"  She replied, "Fine."  As I observed, I would have to agree with her, as my general impression was they were doing fine as well.  However, we randomly took 3 skills that students were working on and graphed the data.  The first student's data indicated that she had met criterion about a month ago.  That is, the level of performance for the skill that was considered mastery in the objective had been met...a month ago.  So the teacher had continued to work on the skill with the student, even though she had met the objective.  Because she hadn't graphed the data, she didn't know.  The second data set we graphed indicated that the student had made no progress over the 5 weeks of instruction delivered thus far.  So the teacher had naively been providing an instructional strategy for 5 weeks with no benefit to the student relative to the objective as stated.  The third data set demonstrated that the instructional program was working and the student was making good progress!  Probably in another month the student would reach criterion.

The point of this is not to criticize the student teacher, but to say that understanding student performance is not something that can be easily seen unless one is made aware of how the student is actually performing via the taking of data.  To say, "I don't take any data" is tantamount to saying, "I really don't care whether or not the student is progressing."

Some teachers will say, "I can either teach or take data" which is a silly thing to say as the only way to teach students with severe disabilities is to take data.  So I would argue that if you are not taking data, you are doing something, but whatever it is it is not educating the students  in the manner they need to be educated.

An additional problem is the extensive problem of teachers working in classrooms for students with disabilities and doing nothing.  It breaks my heart when I see teachers that I have trained whom I know, know what they should be doing but have succombed to the pressure of the environment, the pressure to be mediocre from districts, and regress to the mean of NOT educating their students but rather babysitting them...all the while collecting their paycheck as if they actually were educating them. 

Teachers who are doing a good job, however, literally take your breath away when they show you their data, when the indicate that they know exactly where a student is functioning educationally.  But they are too often rare.

A basic premise I learned when I was being trained as a teacher was...

Every child can benefit from a public school education

I think I would now restate that to say that every child can benefit from a public school education if their teacher actually cares enough to educate them and be aware of whether they actually are benefitting from the education as it is being delivered.

McNair

Beyond Suffering: A Christian View on Disability Ministry

Beyond Suffering is the name of a new curriculum developed by Joni and Friends.  To quote from the introduction,

Beyond Suffering: A Christian View on Disability Ministry is a ground-breaking course of study created to transform the way Christians view God's plan for disability and suffering.  The textbook is the word of God accompanied by a comprehensive collection of professional articles written by more than 35 experts in ministry, education, sciences and disability advocacy.  The study guide contains 16 lessons, which are supported by video case studies and organized into four thought-provoking modules

• An Overview of Disability Ministry
• The Theology of Suffering and Disability
• The Church and Disability Ministry
• An Introduction to Bioethics

I was blessed to be involved in the development of this material and I have high hopes for the way it will be used within the Christian community.
It has the potential to be everything from a Bible study to a college class.  It is a wealth of material to guide the church.

The back cover quotes Chuch Colson saying,

When society wants utilitarian ethics, people on the margins get lost and are forgotten.  I salute Joni Eareckson Tada and the Christian Institute on Disability for equipping the churth to think biblically about the issues of life.

It is really an excellent resource.
McNair

"every one of them"

I was preparing a presentation for a local Christian high school that has begun to offer a special education class.  When thinking through what I wanted to say, I turned, as I often do, to 1Corinthians 12 about the body of Christ.  For some reason, verse 18 of the passage really jumped out at me this time.

15 Now if the foot should say, “Because I am not a hand, I do not belong to the body,” it would not for that reason stop being part of the body. 16 And if the ear should say, “Because I am not an eye, I do not belong to the body,” it would not for that reason stop being part of the body. 17 If the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be? 18 But in fact God has placed the parts in the body, every one of them, just as he wanted them to be. 19 If they were all one part, where would the body be? 20 As it is, there are many parts, but one body.

 There is an emphasis it appears to me in verse 18 that is present in most of the translations of this veres.  It doesn't say,

But in fact God placed the parts in the body just as he wanted them to be. 

Rather it says,

But in fact God has placed the parts in the body, every one of them, just as he wanted them to be.

It appears to emphasize every one of them are placed just as he wanted them.  It appears to emphasize this point as if in the face of questions that might be raised to the effect that "Surely this part is not placed correctly" or "Surely there is no place for this part."  No mistakes, no one without place or purpose, every one of them as they should be for placement into the body. 

As I indicated to the students, there is a mystery in this.  But it is a desire for discovery to understand the mind of God, to understand his purposes, to understand how he put his body together, to see the contribution of all.  Good stuff.

McNair