Jeff McNair

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.  Perhpas 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

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

"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).



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

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

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

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

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

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

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

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.