“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Tuesday, January 31, 2012

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.


Wednesday, January 25, 2012

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.


Monday, January 16, 2012

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. 


Tuesday, January 10, 2012

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.