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

Tuesday, December 10, 2013

Mandella on love

"No one is born hating another person because of the color of his skin, or his background, or his religion. People must learn to hate, and if they can learn to hate, they can be taught to love, for love comes more naturally to the human heart than its opposite." Nelson Mandella

This is a profound statement of how human beings were intended to be. I heard a pastor recently talk about how people excuse themselves when they do not love their neighbor saying, "I'm only human" or something to that effect. His point was that Jesus was the only person who was truly human in that we were meant to live a sinless life and love our neighbor.  When I love my neighbor, I am acting in what should be the natural way for me to act because it is the way I was intended to be. For me, it feels right when I do what is right. It feels right when I show love to others.  Perhaps this is in reaction to the inbred nature that I have as a human being. Clearly, I do not do what I should do, but when I do, the feeling of rightness might be an indication of me touching what I was intended to be.

This is what Mandela seems to be implying by his statement.  If you agreed with the above, you would think love would come more naturally to people because God intended us to love, not to hate. Hate is unnatural. The fact that it is too often the choice does not diminish the fact that it is unnatural.


Sunday, December 01, 2013

"O Holy Night"

Every year, my daughter and I text each other when we have heard O Holy Night for the first time.  This year for me, I heard it in a small, basically empty Thai restaurant where Kathi and I were eating.
But today was the real deal in that we sang it in church.  Both times I texted Ames to tell her.  To date, she hasn't heard it yet.  But it signals the real beginning of the Christmas season for us.

The lyric that is particularly powerful for us, is this one.
Truly He taught us to love one another
His law is love and His gospel is peace
Chains shall He break for the slave is our brother
And in His name all oppression shall cease
Sweet hymns of joy in grateful chorus raise we,
Let all within us praise His holy name

In His name all oppression shall cease. That goes along with the earlier verse that says
Long lay the world in sin and error pining till He appear and the soul felt its worth
This song is so powerful because it demonstrates how valuable people are to God and the ends to which he will go to save them.  In a nutshell, people are exceedingly valuable and the birth of Christ is proof of their value to God. Additionally, if they are so valuable, it will be in HIS name that all oppression shall cease.

So to whom should people affected by disabilities look to see relief from oppression? I would agree with the song that it is those who worship Jesus, who follow Christ who should be the ones who make oppression in any form cease.  He taught us to love one another and through His life and death demonstrated the worth of people. People should feel compelled to look to the Christian church for relief from oppression. If they can't find it there, where then can they go?

We cannot be the ones who disappoint people about their value, their worth. We must be the place were people do not experience any form of oppression.  We need to be the place where they feel love, worth, peace, brotherhood. In particular, this should be the place where people with impairments feel that expression. We need to be a bastion of safety and value for them in an oppressive world.

Remember these things, please, as you sing this song this Christmas. In your heart, "fall on your knees" and both worship and demonstrate your belief that all people have incredible worth.

God bless,

Tuesday, November 12, 2013

Thoughts about the sovereignty of God

In thinking about God's sovereignty in people's lives, I think we can sometimes focus exclusively on individuals. This implies specific plans for specific people. But in the same way that a king is the sovereign over his country, God is sovereign over his kingdom. So, he will have specific plans for individuals which fit into his larger plan for the entire "country." If I see myself as a part of the larger county then I will work to fill my role as it will impact the larger plan. But I might also think that the king's plans for me are for me alone disconnected from the country. So my job is for me alone, not for the benefit of the larger country or anyone else other than me. My money is for me alone, not for the benefit of the larger country. My time is mine alone and not for the benefit of the larger country. If I think this way, it leads to a variety of practices that are outside of sovereignty as it touches me which is meant to be applied to the "country." I may live extravagantly, using the money I have sovereignly received only for myself. I may see my time as something meant to be spent exclusively on myself. I am not sure the phrase, "I need some me-time" is generally a very good thing.

Part of this provision I think is meant for me to share, and if I do share it is because I choose to share it in order to further the kingdom. But if I am forced to share by some government or other group having power over me, that is not the same thing. I am to be wise in how I use God's sovereign provision in my life. Helping can hurt if helpers are not careful. People can become dependent on help when they have the ability to use God's provision of abilities in their own life and act responsibly taking on responsibilities for themselves as agents of what they have been provided. This in not socialism that I am describing here. This is the understanding of how what I have received according to God's sovereignty is to be managed well BY ME in obedience to Him. Part of the problem with government entitlement programs is that I feel that I have no responsibility toward my neighbor because I pay taxes or that i am entitled to be served rather than serve. Why is it unreasonable to expect me to use my lfe for others rather than just for myself? It doesn't matter whether I have or have not, my life as a Christian is not exclusively my own.

This idea grows out of a perception of God's sovereignty being part of a general "country wide" plan versus just for me alone.


Tuesday, November 05, 2013

Inclusion offers people dignity while exclusion removes their dignity

"Fear is the root of all forms of exclusion just as trust is at the root of all forms of inclusion"
At least that is what Jean Vanier says in Becoming Human (p. 71).  It is an amazing book that I would recommend.

If fear is the root of all forms of exclusion, when people exclude people with disabilities from church, either through rejection or exclusionary programs, what do they fear? 

Might they fear people with disabilities themselves because they have no one with an impairment in their lives? I know many people who had never had a conversation with a persons with intellectual disabilities prior to my arranging a meeting between them. They are my students at Cal Baptist university.  They will often relate in reflection papers after the evening that they were afraid entering the evening.  They were afraid because they didn't know what to expect because they had never met anyone with that characteristic before.

Are they afraid they will have to change? One of my students once wrote, "How can we help others without changing our lives?  People don't like change, so they fear interaction with people who might be needy in a variety of ways.  Their fear of being encumbered causes them to exclude others.

Are they afraid of what they may loose if they include persons with societally determined less desirable characteristics? Churches may have separate programs because they are afraid of losing congregational members if they were inclusive. The change that would be brought over them causes them to fear.

Are they afraid they won't be able to do things in exactly the same manner as they have in the past?  I heard a great quote the other day, I am not sure of who to attribute to.  It was a comment from a pastor who was responding the presence of someone with tourettes syndrome in his congregation.  The person would periodically make noise during the sermon.  His response to those who felt uncomfortable about that person and the sounds they made, was to say, "That person didn't interrupt the sermon, they were the sermon." The implication being how we treat people is most important.

Maybe they are afraid that if they include people, people with be unkind.  That is always a possibility, but persons with impairments are not children and the vast majority are able to speak up for themselves.

Whatever the fear, exclusion is not the answer.

Could it also be that we exclude because we don't trust people? Don't trust their social skills, don't trust other behaviors, don't trust...who knows? Trusting involves risk, and there is dignity in risk. Maybe we could push this a bit further and say inclusion offers people dignity while exclusion removes their dignity. Wow that is a powerful idea. Are you a part of dispensing or removing dignity from others?

I used to coach basketball. In teaching about offense, I would say, "If you are standing still for 5 seconds, you are probably doing something wrong!"  When it comes to the church and individuals with whatever characteristic, if you are excluding them, if you are segregating them, you are probably doing something wrong. I get it...there are children's ministries and women's ministries, etc.  But I would echo Vanier's statement with a question. If we are excluding people what are we afraid of?


Tuesday, October 29, 2013

Starving on the farm

Imagine that I am a farmer.  I live with my wife there on our farm.  It is a beautiful farm with corn and tomatoes, fruit trees, and even chickens and milk cows and a small heard for beef. Lets even imagine a fresh stream running through the farm with cool clear water.  Idyllic.

Oh, lets also imagine I have 3 kids who live "at my house."

Dinner time comes, and I habitually go to the cupboard and get a "fresh" package of twinkies for my wife and I.  We wash them down with a bottle of diet Coke!  Yum!
Time to feed the kids too, so a volunteer from across the street comes and gets them from the cottage they live in by the house, and takes them to a place down the street for candy!

Now you might look at my situation and wonder why I am eating twinkies and diet Coke when I could have fresh vegetables, fruits and healthy meat products.  It actually seems a little goofy from your perspective.  But you don't judge me and just go on with your life. 
Then you find out that not only do my wife and I not partake of the fruits of our amazing farm,  neither do our children.  You wonder about the fact that we don't spend time with our children and that we have someone to feed them candy for lunch.

If you heard about the above, would your comment be,
"At least they are doing something.  It is better than doing nothing, right?"

Not only that, would you say, "At least they have someone come in and get them.  And the kids love eating candy all the time!"

Or, if you heard about the above, would your comment be, "Why don't they feed the kids and themselves on the products of the farm? Who in their right mind would give their children over to someone else and just allow them to feed them candy?"

HOLD ON! Let me try to explain the facts to you...
You see...
First, if I kept the children at my house, then I would have to change my home so that it would be more hospitable, safer for them.  You know I have never had to put covers on the electrical outlets and if I did that, then I would have to take the covers off every time I wanted to plug something into the outlet. I would have to put barriers up to keep them from falling down the steps. I couldn't swear as much and I would have to be more patient. Hellish! (pardon my language).
Second, I would have to feed them which means I would need to prepare the twinkies in different ways as some babies need milk, other people need food chopped up into smaller pieces and so on. And we don't like to eat in a different way, a way that might cause us to like chew, or exert other effort.
Third, if there were other people in the house, I would also have to do things that other people like to do rather than the things that I like to do. I have already decided what I like to do and I don't want to change that for some group of people who seem to be doing fine without me and I without them.
Fifth, children do things like get dirty, drop things, talk when they aren't supposed to and for that matter, talk about things that I am not interested in.  How are my wife and I supposed to talk about the things we are interested in if other people want us to talk about things they are interested in.

Besides, we always talk about the children when they are not with us in very positive ways! We say how lovely and friendly they are.  How they are such a blessing! Particularly when they are taken care of by someone else in a different place!

No, this is the best way...At least we are doing something and it is better than nothing.


Monday, October 28, 2013

"If it wasn't for you two I would NEVER leave my room!"

"If it wasn't for you two I would NEVER leave my room!"
That was the title on an email I recently received. A dear friend of mine will often email me with his entire message being the title of the email.  This time his message stopped me short. But this message is not about Kathi and I, it is about the potential power that anyone can have in the lives of people to enrich their lives.
I have often said to groups that I am a good friend to have because I have a car.  But a car isn't even the important thing. It is that you see a person as a person and choose to develop a relationship with them.
My friend happens to have a physical disability and uses a wheelchair which limits his movement somewhat. He could move about the community more than he does, but for whatever reason, he chooses not to. The cool thing is that Kathi and I can be the encouragement to assist him to broaden his life a bit by going out into the community. Nothing special really, we just go to church together, go to a restaurant occasionally, phone call sometimes.
But my friend realizes that the simple interactions we have are the keys to unlock the door to his room, so to speak, and invite him into the community. It isn't that he doesn't want to be in the community.  It is just that he like many people simply needs an invitation from a friend.  No invitation, no involvement in the community. Life all day in his room in front of his computer. But a simple invitation from one person, and his life opens up to meeting others, sharing his gifts and his sense of humor.  Leading others in prayer and so on.
All that is needed is one person in a life to make a significant change in that life.


Monday, October 14, 2013

A young man attempts self advocacy

The attached video below is an attempt by a young man to advocate for himself relative to his frustration that his IEP objectives were not being addressed by his teacher in his classroom.
The Northport Dispatch (October 11, 2013) states,
"The Northport-East Northport Board of Education cut off a 14-year-old boy from speaking during Monday's meeting when the teen, who has a form of high-functioning autism, attempted to express what he felt was unfair treatment in his classroom due to his disability.
Christian Ranieri held back tears as he left the room after being shut down just a few sentences into his speech, in which he was asking the board to hear him out after he felt he was unfairly suspended for two days from school.
The school board president cited privacy laws in his reasoning for halting Ranieri's speech. The Family Educational Rights and Privacy Act protects the privacy of student education records.
Ranieri, a freshman at Northport High School, explained that since the beginning of the school year, his individualized education program and behavior intervention plan have not been implemented. After four weeks without it, his parents called meetings with administrative staff members. When his behavior plan was put in place however, it was done incorrectly, Ranieri said, adding that he was refused when he asked to speak to his teacher outside of the classroom about the error. Out of frustration, he said that he raised his voice at the teacher and was suspended from school for two days for the outburst." 
Here is the video of the presentation...
I love when people are emboldened like this to speak up for themselves.  I have no idea about the specifics of this situation, whether channels wer followed or whatever.  But what I see is a young man self identified as having developmental disabilities, something that takes courage to do. He tells the school board that his teacher is not implementing his IEP which also takes courage.  They don't care.  They tell him the channels to take, his parents indicate they have tried to follow those channels with no success.  All they would have to say is that "We will look into this through the Supt. and he/she will get back to you in __ days."  Instead, they shut him down.
I wish many more parents of students with severe disabilities would call school districts, boards of education, or whomever to account for educational programs not being followed; particularly for students with developmental disabilities.


Friday, October 04, 2013

Open Range and the parts that "seem weaker"

1 Corinthians 12:22 "The parts of the body that seem weaker are indispensable."

     There is a scene in the 2003 western, Open Range, where Denton Baxter (the evil land owner) gets shot up in a gun fight. He drags himself to Doc Barlow’s office and finds him working on Button, one of the good guys. Baxter pulls out his gun to shoot Button lying on the doctor’s table. But Doc Barlow tells him, “You pull that trigger, Baxter, you can forget about me patching you up!” Baxter is now faced with a dilemma. In order for Doc Barlow’s indispensable nature, to be evidenced, Baxter must relinquish his power over the doctor. When he does so, he himself benefits from the doctor’s “gifting.” However, if he as the seemingly powerful person in the room (he has a gun, etc.) does not set aside his power, the seemingly weaker doctor and the other wounded man will not benefit and the doctor’s indispensable nature would not be displayed. 
     The implication from the 1 Corinthians 12:22 passage is not that those in the Body of Christ who seem stronger are violent or evil as in the movie. However, there is a wrong being perpetuated. The wrong is seen in people with power prohibiting others who are gifted such that they are Biblically described as indispensable, from expressing that gifting by refusing to change.
     The parts "seem" weaker, implying that those with power have relegated others to the category of being weaker. As a result, the Body of Christ as a whole, truly does suffer in this way, when one part suffers (1 Corinthians 12:26). The strong are haughty and the seemingly weak are excluded.  Exclusion of people with disabilities leading to this type of attitude is much too common in the Christian church and we suffer as a result of it.
Interestingly, Paul’s correction ("On the contrary" and "seem weaker") once again implies that those who have made the determination of another’s weakness are actually wrong.  Although some are thought weak, their strength, their power will not be demonstrated unless those who wrongly determined they were weak, repent of their error, humble themselves, and provide the opportunity for them to evidence their power (one aspect being how they are a conduit of God’s power).  The seemingly stronger must relent from their haughty exercise of power in both relegating others to weakness and on some level enforcing that perception (through exclusion, segregation, paternalistic behaviors, etc.), ultimately preventing the perceived weak from displaying the strength that causes them to be labeled indispensable. This power of the seemingly weaker when “wielded” over those who are seemingly stronger, will demonstrate why they are indispensable. Perhaps at this point, the “stronger” will repent of the label they projected on another of being weaker (2 Corinthians 7:8-11).  But for the stronger to benefit from that realization, they must first relinquish their power over the situation, no longer relegating others to weakness and the social consequences that accompany that designation.  Power in weakness has the potential to be present, but it is not displayed, not expressed.  It is unused, frustrated from being employed because those having the power to open the door for the expression of another’s contribution, refuse to do so by refusing to relinquish their own power such that it might be seen.
Earlier in 1 Corinthians 4:7, Paul addressed the haughtiness of his readers asking, “What do you have that you did not receive.  And if you did receive it, why do you boast as though you did not?”  They should not see themselves in a manner as “different from anyone else.”  Paul himself was someone who experienced a difference that would have caused him to be relegated to the seemingly weaker class (2 Corinthians 12:10). The end result is the production of entirely wrong, entirely negative perceptions of what is indispensable for body life.  At the most basic level, this is seen in a lack of love for others.  It is also evidence of pride in that I am unwilling to become a servant and in this case, allow others to express their gifting.  This unwillingness to serve, to facilitate expression of the gifting of others because of what might be demanded of me (power over my time, my activities, my traditions and the necessity for change in each of these areas) will prohibit the indispensable nature of those seemingly weaker from ever being expressed.
In 2 Corinthians 12:7-10, Paul describes his experience with a “thorn in the flesh”, how he prayed to have it removed, and God’s response, “My grace is sufficient for you, for my power is made perfect in weakness.”  The implication is not that God’s power is imperfect, but that weakness allows God’s power to be evidenced the most perfectly.  Perhaps this perfect expression of the power of God contributes to why the parts of the body that seem weaker are indispensable.  Paul says, “for when I am weak, then I am strong.”  If for no other reason, weakness may drive me to dependence on God.  Strength may cause me to see myself as sufficient within myself.  Weakness disarms me.  For example, in my own suffering or if I wade into the suffering of others, I find myself at a total loss.  My cry becomes like that of Jehosophat in 2 Chronicles 20:12.  When he is surrounded by the armies of “the Moabites and Ammonites with some of the Meunites” (verse 1), he goes before his people and prays, “For we have no power to face this vast army that is attacking us. We do not know what to do, but our eyes are on you” (emphasis added).  Desperate situations reinforce in us our need to depend upon God.  However, if I am seemingly stronger and I am disconnected from seemingly weaker parts of the body, I will perhaps not suffer with the parts that suffer (as described in 1 Corinthians 12:26) and be lead to dependence upon God.  I will not allow another part of the body to have power over me in making any sort of demands for humility on me, on them, on the entire body. But through my entrance into their weakness, I allow others to make demands on me; sometimes through unsolvable situations of life: demands that would cause me to depend upon God.  God’s power can be perfected in my participation in another’s weakness, if I allow their weakness to become my weakness.  But I don’t want to participate in their experience or at times the difficulties others face, so my response is that I will exclude them. There might be a degree of unconsciousness about these issues, however, one might ask “Why there is a collective unconsciousness within the church?”  This unconsciousness could be squarely placed at the feet of church leadership at a variety of levels. As a result, the statement, “if one part suffers, every part suffers with it” ends up becoming an aspiration, or a statement of how the body should be.

Monday, September 30, 2013

Video answers to questions...What are the hindrances to churches including persons with disabilities?

A question was asked by Tim, someone who viewed one of the other videos on this blog.
His question is important because we want to encourage churches to include persons with disabilities just like we would encourage churches to include anyone else. 


Sunday, September 29, 2013

"I wonder where these people would be?"

My son visited our Light and Power group today.  It is a group in our church, Trinity Church in Redlands, CA, that includes adults with various disabilities.  He visits on occasion, today to go out to lunch with me and our friend Mark who is a part of the group.  We had a great time of joking and fooling around over lunch.

At one point, however, he got a bit serious and thoughtful.  He said that as he sat in class, the thought crossed his mind, "I wonder where these people would be if there wasn't this group, this class?  They certainly wouldn't be here."  Our meeting today included prayer for a missionary friend who has adopted us and is heading back to the mission field.  We had about 15 minutes of prayer for what we were thankful for led by our music team.  There was other prayer and sharing for a great time together.  We sang the old Keith Green song, "How I love you" to God then to each other then as a prayer.  It was cool.

I hadn't really thought about his question, but it is a good one.  I wonder where many others like the folks who have become a part of our church family are today because they have no place like Light and Power to go to.  They don't have a place where they are celebrated or prayed for, or just told that they are loved.  It is a sad thought, particularly when I think of the people who have become so dear to me would have no place to go.

Maybe your church can be the place for folks like my friends to go.


Thursday, September 26, 2013

Community integration as a metaphor for church integration

In the effort to move toward integration, people left institutions for residences in the community.  The end desire was not simply that people would have a home in the community (although a good thing in itself) but that people would be integrated into the community.  That is, they would be known, have friends, experience what might be called a "typical" life.  The difficulty that continues to be faced is that people do not sufficiently experience this form of social, community integration.

Applying this metaphor (perhaps this reality) to the church, our first desire would be to open churches to the presence of persons with various impairments.  This is a programmatic opening.  Perhaps now there will be a program within a church, a disability ministry.  This is comparable to persons who were institutionalized in the past, now living in the community. 

The next phase would be that people in the church would be a part of personal change for themselves, for other individuals and the entire congregation.  This is the "promised land" as with social integration for those in community residential settings.  This is the "not what we do but what we become" in the previous blog.

In both of these cases, what is needed is personal change: change in individuals in the community and the community and change in individual congregational members and the congregation as a whole.  We can develop programs/residences that evidence a form of physical integration, but we cannot be satisfied with that.

It sounds trite, but the changes we desire truly begin with us, whomever we are.  If I want community integration, I must facilitate it in my own life, whomever I am, being with people who would benefit from my efforts.  If I want faith group integration, perhaps I strive to be more like Jesus in loving others, particularly those whom society has devalued, or whose social skills or other personal characteristics make people uncomfortable.  Each of us have this power in our own social circles, and no one is excluded from this potential area for change and growth: secular or religious.

We need to think clearly about disability ministry within the church.  The presence of that ministry at a church is better than there not being such a presence.  But it only indicates that the church has taken a step of physical integration.  I cannot programmatically separate people from myself if I want to become what I need to become as a lover of other people.  I must not decide there are some whom I will love and others whom I will not.  Presence of people opens the door for the opportunity to love.  I need to step through that door and take others with me.


Disability ministry: It is not what you do it is who you become.

I was working on a document about leadership in disability ministry for the Joni and Friends organization this past week.  As I looked at the early draft, something seemed to be missing.  We were describing the development of programs and how those programmatic ideas might be infused into local churches.  Yes, programs are important.  But it occurred to me that what was needed in the document was a discussion of change and maturity development in both Christians who attend church and the Christian churches themselves. 

I can hire someone to develop and run a ministry that includes people with intellectual disabilities.  That program can be on the campus of the church and I can observe those people coming and going, but no demands are made on me individually or the larger church as a whole.  Disability ministry implies a change in both individuals and organization such that people with impairments no longer need to ask, "Why don't you love me?"  Disability ministry means that I have grown to the point that persons with just about any characteristic do not make me uncomfortable.  Disability ministry means that the congregation and the leadership have grown to the point that persons with any type of impairment do not make them uncomfortable.  But disability ministry also implies that persons with impairments are comfortable with others who also have impairments.  For example, in the group at my church that includes persons with intellectual disabilities, that implies that we try to facilitate their growth such that they are accepting of persons with autism and more severe disabilities.

We are all on the spectrum of need, we all find it difficult to love one another, so we all need to become something different than we currently are.  Disability ministry assists us all in that process of change and maturity.

Please don't be confused into thinking that disability ministry is just another ministry of the church, another program to be instituted.  It is about helping people become someone who is more like Jesus independent of personal characteristics.  That change is facilitated through the discomfort (for many) that comes through integration.  I will not learn to love someone with mental illness if I never am challenged to love someone with that characteristic.  The person that I would become if I learned that lesson will never be.  The church that doesn't learn that lesson will never be.

This is an area in which I need to embrace change and recognize that I am not OK the way I am.  Could someone look you in the eye and be justified in asking, "Why don't you love me?"  Do you care enough to prevent that from happening to you or your church by becoming something different?

Programs are fine, but they really are not what is truly needed.

Tuesday, September 17, 2013

Free articles from the Journal of the Christian Institute on Disability

The Joni and Friends organization's Christian Institute on Disability launched the Journal of the Christian Institute on Disability one year ago.  Subscriptions are available at their website.

You can also free copies of two articles from the first two issues.  This is something that the journal plans to provide with every issue: one free downloadable article.

The first free article is...

What Would Be Better?

Social Role Valorization and the Development of
Ministry to Persons Affected by Disability 
  MA R C   T U M E I N S K I   A N D   J E F F   MCNA I R

There is much that Christian churches can learn from relevant secular

approaches and adapt to support integration and participation within our
congregations for adults with impairments. One of these approaches is
Social Role Valorization developed by Dr. Wolf Wolfensberger. In this
approach, one considers the relevance of image and competency of devalued
individuals and how these two areas impact access to “the good things
of life.” This article applies these principles to the inclusion of vulnerable
congregational members into the life of the Christian church, asking the
question, “What would be better?” as a prompt for those in leadership to
reflect on their current practices with an eye toward maturity in their practices
as they intersect the lives of devalued people.
The second free article is...
Almost Friends



A survey was conducted of human services professionals working with
individuals with developmental disabilities regarding issues related to
friendship. Seventy-six percent agreed that there is a difference in friendship
between people being paid to be with a consumer of services and
those choosing to be with that same individual. The authors concluded
that it appears that those individuals serving persons with developmental
disabilities are “almost friends” in that although they are potentially
friendly, they are paid to be with those with whom they interact, and that
for these and a variety of other reasons are not able to be real friends.
To download these articles, go to the following website.



Thursday, September 05, 2013

A fantastic illustration of friendship

A student in the Cal Baptist Disability Studies program, Desiree Lesicko shared this video with me.  On one level it is just a beer commercial.  But the message is so fantastic.

There are many persons affected by disability who do not experience the kind of friendships illustrated by this video.  Instead they experience social isolation.  We need to choose persons affected by all kinds of impairments as our friends.  The benefit of such relationships is mutual.
"The choices we make reveal the true nature of our character." 
God bless,

Tuesday, September 03, 2013


At a meeting at Joni and Friends this morning, a video was shared which needs broader airplay.  It is about a photographer, Rick Guidotti.  I won't try to describe what he is doing, I would simply refer you to the YouTube video.  It is beautiful!

May God open the church to a perspective similar to this one...


Monday, August 26, 2013

God's intimate knowledge of people

I was thinking about how in depth God knows each of us.  This is important, because society would give us the impression that people with impairments are "mistakes" if born with a disability.  Science even uses terms that imply human characteristics are errors.  But if you look at the Bible, we see passages such as these...

29"Are not two sparrows sold for a cent? And yet not one of them will fall to the ground apart from your Father. 30"But the very hairs of your head are all numbered. 31"So do not fear; you are more valuable than many sparrows.( Matthew 30)

13For you created my inmost being;
you knit me together in my mother’s womb.
14I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well. (Psalm 139)
7Now to each one the manifestation of the Spirit is given for the common good...
18But in fact God has placed the parts in the body, every one of them, just as he wanted them to be.  22On the contrary, those parts of the body that seem to be weaker are indispensable (1 Corinthians)
There is an intimacy there.  The implication is that every life has purpose and value.  That may help in the acceptance of God's sovereignty, which can be very hard to accept.  At the same time, this perspective flies in the face of randomness, of a random world just going on with no purpose.  Without God, the experience of disability would particularly difficult, I would think, as aspects of life that might seem unfair and particularly difficult would have no meaning or purpose.  That might have been the Apostle Paul's perspective when he relates that he prayed for healing 3 times.  Ultimately he receives an answer from God...
9But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” (2 Corinthians 12)
There seems to be a change that comes over Paul.  He is still the same, with the same "thorn" that he had before God's response, however, he moves from praying for his impairment to be removed (nothing wrong with that prayer, by the way) to stating...
Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 10That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. (2 Corinthians 12)
He understands the social consequences of disability with his comments regarding his experience with weaknesses, insults, hardships, persecutions and difficulties.  He accepts the sometimes very difficult sovereignty of God, and concludes this passage with the statement, "For when I am weak, then I am strong."  He is strong in God's grace.  Perhaps he sees a purpose in his experience.  At the very least he is leaning with all his might on the grace of God, which God says will be sufficient for him.  I have to believe that if God tells you that His grace is sufficient, He is both telling you the truth, and He is making a committment to you that His grace will be sufficient. 
If God has the ability to change a person born with a disability, or heal a person with an acquired disability, and He doesn't we must lean on his grace which he says will be sufficient.  That is in no way easy.  It may be incredibly difficult.  We must ask God to give us the faith in the promises of God.  At that point we endeavor to believe in His intimate knowledge of us, His purposes for us, and call on him to follow through on His promise that His grace is sufficient for us.  But more than that...
I have to believe in His intimate knowledge of me.
I have to believe He has a purpose for me.
I must believe that His sovereignty is right for me.
I must know that He has a purpose for me.
Because He says that His grace is sufficient for me, as He intimately knows me, as I am.

Friday, August 16, 2013

Video answers to questions...What does the Bible say about disability?

I am going to periodically post links to video responses to questions often raised by people interested in aspects of disability and people impacted by impairments.  The video link will be provided and there will be an opportunity to comment and/or pose further questions either on YouTube or here attached to specific blog entries.

The next question I want to address is, "What does the Bible say about disability?"  These answers will be brief, but as you will see from the video I will do what I can to take the questions on and provide the best response that I am able.

God bless and here is the next link.


Video answers to questions...Is sin the cause of disabilities?

I am going to periodically post links to video responses to questions often raised by people interested in aspects of disability and people impacted by impairments.  The video link will be provided and there will be an opportunity to comment and/or pose further questions either on YouTube or here attached to specific blog entries.

The first question I want to address is, "Is sin the cause of disabilities?"  These answers will be brief, but as you will see from the video I will do what I can to take the questions on and provide the best response that I am able.

God bless and here is the first link.


Tuesday, July 23, 2013

Friendships are not utilitarian

In a conversation with students this past week, we talked about friendship.  When we discussed why someone develops a friendship with a person, in particular with a severe disability.
I asked "Why would someone choose to develop a friendship with someone having a severe intellectual disability?"  Responses related to how much one could learn from such people, how much they have to give, how their life impacts those around them and so forth.

I then asked several of the students, one at a time,
"What is the name of your best friend?" 
A typical response was, "Ginny." 
"What do you and Ginny like to do together?" I then responded.
"We like to watch movies, drink coffee and just hang out." was a typical response.
I then wondered aloud, "Why must a friendship with a person with a severe disability have a utilitarian component when your friendship with your other friends is just based upon being together drinking coffee or watching movies?"

I admit I didn't plan on the discussion, it kind of just happened, but as I thought out loud, I recognized that the criteria for friendship for some reason seemed to be different for typical friends in comparison to potential friends with severe disabilities.  It was like the same criteria would not work for a person with a severe disability that might work for someone without that characteristic.  For me to have a friendship with a person with a severe disability, I must identify something that you have to give to me (utilitarianism) as a reason for the friendship.  Perhaps because I have bought the lie that a person with that characteristic has nothing to offer me, so I have to find something that they may have to offer in order to justify friendship.

I thought of my friend, Doug, a neighbor who will just stop by my house unannounced.  For some reason, I never expect him to show up.  He drives up on his 4 wheeler (I live in the country) comes in, we have a cup of coffee or dinner if he hasn't eaten yet.  We talk about what he is doing or what I am doing or maybe just sit and watch whatever Kathi and I happen to have on the TV.  I love it when Doug stops by unannounced.  Sure he has helped me do things at times and I him, but 90% of our time together is just typical hanging out that friends do.  I am not his friend because of how much I can learn from him, or how much he has to give, or how his life impacts those around him.  We just enjoy hanging out together.

One of my best friends was a man with severe intellectual disabilities.  It was funny that I just started visiting his group home because I wanted to do something nice for the men who lived there.  I would go by with a bottle of soda and something to munch on and hang out for an hour.  Increasingly I found that Thom and I connected.  He liked me and I liked him.  He would tell me about his day program, how he wanted to marry his teacher, about his brother in whom he was so proud and about the Angels, Dodgers or Lakers.  I would tell him about things I knew he would be interested in,. like my horses or that I had had a barbeque, or how he was my friend.  He would often say to me, "I am nice to you, Jeff." and he was!  He passed away about a year ago and it was interesting to me to find that I didn't have the same desire to visit the group home as I did before.  Why?  Because my friend no longer lived there!  I liked the other men and women who live there, but Thom was my friend.  He was my friend in the same way that Doug is my friend.  Not because of what he could do for me, but because we enjoyed hanging out together.

No real friendship is truly utilitarian.  If you are looking for utilitarian relationships, you are probably not looking for friendships.  As you consider befriending those with the characteristic of severe impairment, do not attempt to make the relationship anything different than the relationship you have with other friends.


Wednesday, July 17, 2013

A "form" of physical integration

A student of mine was recently writing about opportunities for persons with intellectual disabilities to be integrated into the community.  He describes a scene where people are in the community but are largely being "protected" from the community.  The presence of "care providers" both facilitates isolation while communicating that the care providers are care providers and not people with impairments like those they are providing care for.  In discussing this with another friend, he reminded me of how in most any food court in America, you can sit and watch people with disabilities being brought into the setting, as a group, with their care provider/protector, being physically present but without any possible opportunity for social integration with the community.

I made the point with my student that he must be clear in speaking about forms of physical integration...being present physically but not present socially.  Perhaps the requirement of the agency for whom the care providers work is that people have the opportunity to physically be in the community.  Their assumption, I would assume, is that because there is physical proximity, there is also social integration going on.  This is a very foolish assumption.  Now obviously it is difficult to be socially integrated with someone if you are not in the same enviornment with them, but physical integration is completely different from social integration.  Some groups make no effort to physically integrate people because of the way they perceive those with disabilities, all but indicating that there is something about them that makes them unworthy or at best ineligible to be socially integrated.  These people are fools who should not be given any responsibility relative to the support of persons with disabilities.  Unfortunately, our secular models for the delivery of human services seeks people who see persons with disabilities as unintegratable which makes the segregationist models for human services more administratively convenient.

I mean imagine care providers truly taking people to the food court such that they will meet and integrate with others in the community.  As soon as unregulated, community members have access to persons with disabilities, there is the risk that relationships might be built.  Once you have a relationship with me as a state regulated person with an impairment, you might become concerned about the treatment I am receiving.  You might show up at my group home or my sheltered workshop, or even at the food court where I am eating.  You will see those managing me frustrating any efforts on my part at social integration, and you might start to complain.  How much better if you would not care about people with impairments, leave their care up to those who are "trained" and go about your business.  That is the form of physical integration which is most likely desired by those providing services.  The involvement of community members in the lives of people who are regulated is simply too messy to manage.

As the church and Christian community awaken to persons with disabilities in the community, they will experience significant push back from those who manage their lives.  Push back will come in the form of prohibiting things that they really don't have the right to prohibit.  Limiting choices about choices that shouldn't be limited (my daughter told me of a man consistently given a cheese sandwich for lunch when he wanted waffles, which of course was quite unreasonable untill a lawyer showed up).  Limiting relationships through the desire to regulate everyone in the life of someone with an impairment.  These are the kinds of behaviors which influence the experience of physical integration of persons with disabilities.  It is not in the best interest of the state, of agencies, of care providers for people with disabilities to be truly physically integrated leading to true social integration.


Monday, July 15, 2013

Wading into messy lives

There is a degree to which in a situation where everyone has largely perfect social skills and where few people look to us to solve their problems, we are able to do our programs in our own strength.  As we increasingly involve ourselves in the messiness of people’s lives, whether due to their choices, impairments, etc., we have less confidence about what we should do and therefore are driven to rely on the Lord for assistance.  This, in the end, is good for both those with difficult lives and others around them.  As we wade into their difficult lives in order serve them, 1) we share in the suffering of others in their messy lives, 2)  we learn service and 3)  we learn a reliance on the Lord in the midst of these extreme difficulties as neither we nor they are able to solve the complex difficulties of the lives of others.  We are compelled to dive into the scriptures to understand God’s mind and also end up in desperate prayer to seek God’s wisdom, God's direction and even God's direct intervention.  Someone very dear to me has told me that when he has cried in recent years, it has been because of the pain of others that he has sought to support.  He truly has suffered with other parts of the Body of Christ.

Although I experience this at times, I do not experience it sufficiently enough in my life.  This reveals to me the types of people I have in my life.  As I read one of my favorite passages in the Bible, 1 Corinthians 12.  Verse 26 says, "If one part suffers, every part suffers with it..." and I think to myself, "I don't think so."  To me that seems more like an aspiration for the Body of Christ.  Maybe in some existential manner we all suffer together, but I don't sufficiently and the Church doesn't sufficiently feel the suffering of those in the community who suffer, in particular those who may be suffering with aspects of their experience with disability.  Obviously, not all people with impairments suffer, however, the social isolation, the comments that "I have no friends" and even the dealing with pain or other aspects of impairment, these things the church is not sufficiently aware of.  In fact a statement often given by pastors or others within the church when confronted with the reality of this experience is that "I didn't know."  How can I suffer with those who suffer if I don't even know who they are?

Our American society allows us to make a lot of assumptions about the experience of people in life.  We are aware of the presence of various human services and assume that they are sufficient to meet ALL the needs of those who use them.  As I have referred to a hundred times, we are like Scrooge replying that we pay our taxes, implying that I have no further responsibility for my neighbor because I have had money taken out of my paycheck against my will to support them through government programs. 
I would argue that not only are these government programs insufficient, the models they are based upon are so wrong that the exacerbate many of the problems they claim to be addressing. 
But I will never know that unless I wade into the lives of those who are living on what appears to be a different side of the sovereignty of God than I am.

When I wade into the problems of others, and feel overwhelmed like they do, and feel hopeless like they do, and feel alone like they do, their experience guides ME to total reliance on God and perhaps through my reliance on God, guides them to reliance on God.  We should suffer with those who suffer so that we can become the Body of Christ described in 1 Corinthians 12.

May God give us the desire us to become his body.

Saturday, June 22, 2013

Disability Studies at California Baptist University

California Baptist University invites you to consider our MA degree in Disability Studies. The degree is entirely online.

We are one of the few if not the only Christian university offering an MA in Disability Studies nationally, and perhaps the only university in the world offering a MA degree in disability ministry. 
We are focussed on developing leaders in the field.  Nearly 50% of our first cohort of graduates (2012) have had their MA research published in a professional journal.  Students have come to us from the fields of policy, nonprofit management, ministry, and human services among others.  Graduates are working as teachers of children and adults, government agency workers, directors of nonprofits, vendors of human services, directors of parachurch organizations, working in disability ministry and as pastors among other pursuits. 

We are accepting applications for the fourth cohort now through August. Classes are taught by Dr. Jeff McNair and a faculty of experts in aspects of disability studies. For more information, check out the website, Disability Studies at CBU  or you can contact Dr. McNair directly at jmcnair@calbaptist.edu  or our dean of admissions Ted Meyer at tmeyer@calbaptist.edu

This program received WASC accreditation Summer of 2008 and has received significant input and support from the Joni and Friends organization whom we consider our partners.

So please do not hesitate to contact Dr. McNair with questions or to request an application or you can visit the website above for more information.

Friday, June 21, 2013

Pride, sin and depression

Had a conversation with a man the other day who shared with me that he suffers from periods of depression.  He actually lives with a manic/depression form of mental illness and although through medication he has it somewhat under control, he will sometimes still deal with depression. 

He shared how when he has shared his disability with pastors or teachers (he hesitates to bring it up anymore), he is often told that his problem is "unconfessed sin in your life."  Now my sin can definitely cause me to be depressed, however, if I have clinical depression based upon a form of mental illness, my depression is not due to unconfessed sin.  That is the first lession.  Second, if you tell me that the reason I experience depression is because I have unconfessed sin in my life, you are basically saying that you think you are better than me because you, as an idyllic, humble example of righteousness have confessed your sin so you do not experience depression.  While I have such an obstinate attitude that I will refuse to confess my sins and thus I experience my depression.

This response is not only simply wrong, it is so prideful in judging one's neighbor when you may have no idea of what the person with the mental illness is experiencing.  Need I even mention the book of Job?  You experience no impairment, no disability, no mental illness because of your righteousness, while I experience impairment, disability, mental illness because of my sinful condition that you claim I refuse to confess.

This perspective is referred to as the moral model of disability.  I basically states that impairment/disability is due to what I have done, or my parents have done or my family has done.  You see I/we are bad people and we are just getting what is coming to us.  But if we were more like you who does not experience impairment/disability then we would not experience impairment/disability too.

When I have the opportunity to speak to groups, I often ask whether sin is the cause of disability.  Not from the perspective of the "original sin of Adam" but just more related to my personal sin.  Now I can do things of a sinful nature that can cause disability in others.  If I act violently towards another person I can cause disability.  But does the fact that I am a thief or a liar, or do not honor my parents, etc., basically that I am as Paul referred to himself  the worst of all sinners (1 Timothy 1:15), should I expect that my children will as a result be disabled?  In reality if sin were the cause of disability and I truly understood the sinful condition of people, then I should expect that ALL of our children would be disabled.  In my personal life, I know that sin is not the cause of disability because neither of my children are disabled.  I know myself, and trust me if sin were the cause of disability my children would be disabled.

But back to the conversation I had with my friend.  He may do things in his life of a sinful nature that can cause him to feel depressed, but his experience of mental illness is not due to unconfessed sin in his life any more than the lack of mental illness is caused by the confessed sin in the life of his detractors.  We need to understand human impairments for what they are.  We need to understand the pervasiveness of sin in all of us.  Recognize that it is the pride in me that causes me to see myself as somehow perfection in my spiritual astuteness to confess my sin, while simultaneously seeing someone who experiences impairment/mental illness as other and imperfect and unrepentant.

Get the log out of your own eye before you point out the splinter in someone else's eye (Matthew 7:5).


Thursday, June 20, 2013

The power of the victim in the Good Samaritan

Following up on the last post about power, it occurred to me that in the story of the Good Samaritan (Luke 10:25-37), power can be seen.  That is, in the story one man is beaten and left for dead.  Three others come by.  First was a priest, second was a Levite (apparently a kind of assistant priest) who both passed by and didn't help the man disabled by the beating.  But a Samaritan stopped, helped the man and took him to a hotel where he could be cared for.

The new point for me was that the man who was disabled by the beating did nothing but lay there.  His only role in the story was that he was present.  When those who were arguably more "powerful" in that they were able to get up, move, do the things they wanted to do like travel came into his presence, his presence alone revealed their character.  They were much more powerful by comparison, he had no power by comparison (1 Corinthians 12:22 again, "seem weaker") but his presence alone was either hugely affirming or quite damning of the character of those who came in contact with him.  I mean think about it!  For centuries since, the Samaritan and his response has become a part of western (at least) language.  We all recognize that the Samaritan's character was revealed in this exchange (well it wasn't really an exchange because one person did nothing), in this encounter (a better word).  The priest and the Levite probably thought themselves good guys, regular temple attenders, respected in the community and so forth.  But the presence of a person with a disability revealed at least to some extant who they actually were.

And who were the priest and the Levite?

Jesus tells us.  They were people who were not a neighbor, who did not love their neighbor.  So who are we as a church?  We are people in the words of Jesus who do not "Go and do likewise."  We are the ones who pass by on the other side.  We are the ones who are unwilling to be changed by the presence of people who simply by their presence have the power to either reveal our character or potentially change us through the insight we get into who we are.  They are once again, "indispensable" because they will show us, all of us, independent of where each of stands on the disability/impairment continuum, who we are relative to the second greatest commandment of loving our neighbor as ourselves.

But people need to be present among us for that power to be weilded.  We need to stop the "passed by on the other side" kind of behavior which is little more than deliberately ignoring our neighbor.  The sad part is that both the priest and the Levite "saw the man" which resulted in the behavior of passing by on the other side.  When people tell me they just didn't know about people with disabilities in the community, I don't believe them.  Church leaders know there are people with disabilities in the community.  Although they may not actually put themselves in a place where they see them, they are still passing by on the other side.

Why is the inclusion of persons with disabilities so foundational?  Jesus shows us that if we do not love them, we do not love our neighbor.  What could be more basically wrong with us than if we don't love our neighbor.  The image of a man "left for dead" is a perfect illustration.  How often does the church, knowing people with disabilities are in need and in the community, attitudinally leave them for dead.  Everyone around the beaten man in the story allowed him to be "left for dead."  The social isolation and lives being filled with "almost friends" (Baca & McNair, 2013) people who are exclusively paid to be with a person with a disability, is how we leave people for dead today.  We must be like the Good Samaritan, love our neighbor, and reflect Jesus' directive to "Go and do as he did."


Baca, J. & McNair, J. (2013).  Almost friends.  Journal of the Christian Institute on Disability, 2(1).

Wednesday, June 12, 2013

Power and 1 Corinthians 12:22

1 Corinthians 12:22 "the parts of the body that seem weaker are indispensable."

I always pray for new insights regarding things related to the church and persons with disabilities.

The insight that recently came to me, was related to the part of the verse that says "seems weaker."  The rest of the passage indicates that persons who seem weaker are indispensable, but it doesn't address why they only seem weaker when in reality they are not. This is the new insight I received this morning.  People with disabilities have the potential to cause wholesale change the church and the traditions of the church with their presence.  So they may seem weak but the power of their presence is actually so powerful that if embraced it will change everything within the church. They are therefore, both indispensable and incredibly powerful to change the church...though seemingly weaker.

1 Corinthians1:27-29, particularly verse 27  says "God chose what is weak in the world to shame the wise."  When one is shamed, one is expected to do something in response to the shaming, perhaps a change in one's behavior, apologizes, etc.  Coupled with 1 Corinthians 12:22 the seemingly weaker will shame the wiser, potentially to bring change.

1 Corinthians 1:27-29 says, God chose what is
   -low and despised in the world
   -even things that are not
   -to bring to nothing things that are
   -so that no human being might boast in the presence of God

It involves the bringing of change
   -via shame
   -bringing to nothing things that are (perhaps traditions)

God is strong in weakness.  If we allow God to use our weakness, he will act powerfully.  People seem weaker because we don't see their weakness in concert with God's power.  Using the understanding of weakness/power given us by the world, we see people as weak because in part we see them, in themselves, and don't understand God's purposes, particularly in weakness.  They therefore seem weaker.

Now power can be displayed in at least two ways.  Power can come from being over others.
Power can come from being necessary to others, in being indispensable to others.

Arguably, the power of those who seem weaker (they seem so but actually are not) is the second type in that they are powerful in what their presence allows or causes the whole body to become.  However, I can see what I might become with their presence, decide I don't want to become that thing, nullify their actual power, and relegate them to being perceived as weak.  But I might also be blinded to the changes their power exercised would bring and so do not find out what the change would be.  I probably  need to first include them and then see where I would be taken in terms of change.

Powerful people may exert their power over others and cause some type of change.  But the type of change we are discussing is not that exerted by the powerful, but rather the relinquishing of power to the "weak" by allowing the changes they bring.  Power is being transferred to them in the changes they bring.  They will enjoy the changes they bring, but they are not changes they in any way actively sought (particularly those with more severe disabilities).

Foucault would say that when people resist, it is evidence that power is being exerted.  The resistance of churches and church leaders could therefore be evidence of the unintentional exercise of the power of the week, simply by their presence.  The rejection by the church of this power to change (acquiesce to change by the church) might thus be the reason why those who are indispensable, seem weaker.

The pressure to love is another form of this power people exert over one another.  They may actually say, "You must love me!" but rarely so.  But with the Bible in one hand and the person needing some loving response from me present at the same time, the power of the Bible's command to love exercises power over those who would submit to becoming aware of it/the situation.  The responsibility to love is power over a person.  Think about this in reference to 1 Corinthians 13.


Thursday, May 23, 2013

Survey of Fathers of Children with Disabilities

A colleague of mine, Rev. Joe Butler, is conducting a survey of fathers of children with disabilities.
If you are a father or know a father of a child with a disability, would you please forward this link to him?
Thanks so much!  I am excited to learn what Joe will find from his research.

Tuesday, May 21, 2013

More honor to parts that didn't have any

1 Corinthians 12:24b-26 says,
But God has joined together all the parts of the body.  And he has given more honor to the parts that didn't have any.  In that way, the parts of the body will not take sides.  All of them will take care of each other.  If one part suffers, every part suffers with it.  If one part is honored, every part shares in its joy.

How does one give more honor to parts that didn't have any?  Could it be that we overlook the reasons that someone would not have honor.  We overlook things like social skills or the sounds made by someone with Tourettes syndrome, or odors which might accompany someone who does not have bowel control, or other aspects of disability over which someone has little control and an inability to change.  In this way, we give honor to those who "don't have any."  For some, we would expect certain behaviors or abilities, however, for those with forms of disability, we altogether honor those people by not separating them, by changing the way things are done such that they can be included down to social skill standards, personal comfort, or traditional ways of doing things.  In this way we honor people who by societal standards do not have honor.  As we understand the lives of people who are dis-honored, we begin to understand the suffering experienced by people.

When the verse says, "If one part suffers, every part suffers with it" I believe it, but I don't see it.  People in the body do not suffer because of the suffering of others whom they may not even be aware.  Perhaps this is a description of something that happens that I am unaware of.  I may suffer from the suffering of others in ways in which I am not aware.  I am experiencing a life that is not what it should be because of those who are suffering which once again I am unaware of.  So we together should be something that we are not because of the suffering of others.  Perhaps if I was truly aware of the suffering of others and suffered with them I would be something that I currently am not.

Wednesday, May 15, 2013

More on disability as commodity (commoditization of disabiltiy)

"The $5.7 billion United Nations Development Program, the U.N.’s flagship anti-poverty agency, is
poor at producing lasting results,
sets unrealistic or unfocused priorities and
often seems more interested in getting funding than in setting up programs that make the best sense,
according to an internal assessment that will be discussed at a top-level meeting next month." (emphasis added)

That is the way a Fox News article begins, entitled, "UN anti-poverty agency chases cash rather than results, study finds."  The article is available here.

I feel this is the same rebuke that might be laid at the feet of many school district programs, adult service agencies and university programs.  Particularly in relation to persons with disabilities, the services they receive cause them to become a commodity that is used to pay people's salaries, buy out their time and do a wide variety of other things unrelated the reason for the actual funding.  The article goes on to say that related to the goals for which money were given they have
"limited ability . . . to demonstrate whether its poverty reduction activities have contributed to any significant change in the lives of the people it is trying to help." 
So billions of dollars have been spent, with no accountability, "limited ability" to demonstrate whether the money did anything for those it was intended to assist or whether there was any significan change in people's lives.
I think we do many human services in the same manner.  We assume that the human services paid exhorbitant amounts of money to serve persons with disabilities are in some way making a big difference.  Perhaps they are on some level, but the life they provide is poorly evaluated in comparison to being the type of life the average citizen would desire.  When services are monitored, they are arguably monitored under the wrong type of models, the wrong philosophy.  The result are outcomes that if viewed by the average outsider would be considered undesirable.  The person viewing the services just perhaps shrugs and says, "I guess that is the best we can do."
But I don't believe it is.  Our basic models are wrong which is why those with a community presence aren't being recruited to the degree they might.  Instead, natural resources are shunned in preference of those who are paid.  And those paid services have produced questionable results.
I don't think we need more money in human services (education, adult services, etc.).  I think we need to be wiser about
  • how we spend the money,
  • the goals we develop,
  • the way we see the responsibilities of paid agents versus community members,
  • the way we see ourselves as community members
  • even the basic importance of integration which is comparable to the criticism of creating programs that do not make the best sense.
Change needs to happen, but will not happen till more people are aware of what the system is, how it makes disability a commodity, and finds ways to truly evaluate outcomes that would justify the spending of money on services.

Wednesday, May 08, 2013

Disability as impaired relationships

Disability as impaired relationships

Disability might be defined as a characteristic of individuals, something that impairs social relationships. Impaired relationships are possibly because a person may have an impairment in themselves that makes it difficult to form social relationships.  For example, someone might have autism.  Impaired relationships are also possibly because of discrimination by a society that does not want to develop a relationship with someone who has the characteristic called impairment.  This definition recognizes there are characteristics of individuals (impairments), and characteristics of environments, (discrimination or lack of caring or embracing the relegation of responsibility to governments, paid agents, etc.), which come together to define what disability is.

Because many people with disabilities have an impairment that impacts forming relationships (once again as above in that they have a personal impairment or experience discrimination because of their impairment), then the result is that society has to pay people to be in relationship with them because society will not choose to be in relationship with them otherwise.  These individuals are “paid relaters” or “almost friends" (Baca & McNair, 2013).  These individuals are potentially problematic in that they take the place of natural relaters or friends.

There's a degree to which the investment of society in making a bodily impairment something that does not impact function, will impact the opportunity that a person has to form relationships with others.  However, I might actually orchestrate a particular type of functional impairment and then design human services in a way that that would 1) provide control over the commodity of disability, and 2) maintain the particular form of functional impairment that needs me as the service provider.  I will not encourage community integration as that might reveal, that the separatist functional impairment that I have created is not real, and that people may actually be able to function in the community with much diminished supports being provided by the government (ie., they don't need me as a human service provider).

So the question is, to what extent have existing human services a been created by making disability a commodity?  To what extent is the creation of “paid relaters” or "almost friends" assent to the fact that disability is something that impairs social relationships?  That is, rather than working to address impaired social relationships by changing both the individual and society, I exclude people from community integration and pay workers to be in relationship with people with disabilities.  I would therefore monetarily benefit from my recognition that disability is impaired social relationships.  Human services would continue forever to be based on a medical model because a medical model both maximizes my extensive knowledge on how to evaluate individuals (whether or not I know what to do with that information in terms of interventions or actually care whether people are in natural relationships), and minimizes my lack of understanding of social environments in terms of facilitating changes in those environments such that they would lead to social relationship development (leading to interventions which could be counterproductive to my medical model of providing “paid relaters”).

“Paid relaters” are also a wide range of people.  They include every one from physicians to teachers, to social workers, to job coaches, instructional assistants or other entry level human service workers.  All of these faces in the human services crowd have at least one commonality: they need there to be something wrong with a person that “only they” can address.  Whether the thing that is wrong is real or fabricated is somewhat irrelevant.  Whether what is wrong can be attenuated by means other than what they can provide may also to some extant be irrelevant.  Whether their services make a difference is often irrelevant.  Oftentimes the services they provide are the only game in town so people can go to them or not receive services.  Are the services provided are what is best for the individuals being served?  The answer is arguable either way.  Services might be evaluated on the basis of criteria set by an agency or service provider, however, they are too frequently are not evaluated on the basis of what is best for the individual receiving the services.

Paid relaters are largely government agents from various agencies who appropriate relational positions which should be filled by community members.  Do human service agencies ever evaluate social environments to determine whether the “supports” they are providing might be filled by free agents in the community?  Do they exert any effort to facilitate the development of community relationships?  There is a huge literature on natural supports which seems to have been either lost or ignored, perhaps in part because such supports were not sought in the correct venues.

In times of fiscal restraints, the menu driven services may be attenuated, however, alternatives that would not require the services of those being paid to provide them are not explored.  We are probably not interested in cheaper services being provided by neighbors and community agents.  This is evidenced if only in the manner in which the community is not engaged when it might be.  For example, individuals with developmental disabilities living in group homes in the community are totally socially isolated from that same community in which they live.
If for the purposes of service provision, disability is defined medically, there is no real reason for community integration as disability is housed in the individual.  Expanding one’s mind to invite the community into the life of someone with a disability, only invites the discrimination which characterizes a social model of disability.  Apparently, the best thing to do, therefore, is to keep people away from a discriminating community and allow the “paid relaters” to rule their lives.

One means of intervention would be figure out how to address impaired relationships.  To what extent are impaired relationships due to characteristics of the individual in terms of their own impairment?  To what extent are impaired relationships due to a discriminatory environment?  To what extent are impaired relationships a natural outgrowth of the manner in which human services are designed, funded and provided?  Are existing services simply due to a lack of creativity?  If our definition of disability revolved around relationships, then we might evaluate the success of intervention programs on the basis of the presence of typical relationships with regular community members in the lives of people having the characteristic of impairment.