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.

McNair

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.

McNair

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.
McNair

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.

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).

McNair

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."

McNair

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

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
WHY?
   -to bring to nothing things that are
WHY?
   -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.

McNair

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?
https://s.zoomerang.com/s/disabilitystudies
Thanks so much!  I am excited to learn what Joe will find from his research.
McNair

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.
McNair

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.

 

McNair

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.

 

McNair

Christian Institute on Disability, Beyond Suffering Curriculum for iBooks

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

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

The wrong models (commoditization of disability)

Some recent thoughts...

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

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

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

McNair

Fed in a particular way

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

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

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

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

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

McNair

Nate's story

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

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

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

Nate then said to the church leader,

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

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

McNair

Call for Papers Journal of the Christian Institute on Disability

CALL FOR PAPERS

 

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

 

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

 

Instructions for Authors

 

Submission of Manuscripts

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

 

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

 

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

 

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

Entering into the suffering of others

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

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

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

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

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

McNair

Cause for Life

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

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

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

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

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

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

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

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

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

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

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

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

McNair

"Rights without opportunity is meaningless"

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

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

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

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