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


Wednesday, July 18, 2007

Learned helplessness and learned unhelpfulness

Learned helplessness results from period in which someone encounters failure and as a result just gives up. It is a motivational problem. People will say, "I'm tired of fighting" or something to that effect.
Learned unhelpfulness is the result of someone being taught that all they need to do to help their neighbor is to pay their taxes, or contribute some money to a group that is doing something. People will say, to use the words of Ebenezer Scrooge in Dicken's A Christmas Carol (see A nation of Scrooges? ),
“Are there no prisons? . . .And the Union workhouses?” demanded Scrooge . .
.”Are they still in operation? . . .The Treadmill and the Poor Law are in full
vigor, then?” . . . “Oh! I was afraid, from what you said at first, that
something had occurred to stop them in their useful course,” . . .”I wish to be
left alone” . . . “since you asked me what I wish, gentlemen, that is my answer”
. . . “I help support the establishments I have mentioned – they cost enough:
and those who are badly off must go there.”

Those having the potential to help, instead look to the government because they pay taxes, or look to some organization because they give money. As a result then are unhelpful on a personal level.

In the end there is a confluence of learned helplessness and learned unhelpfulness. Those needing assistance may be totally frustrated with government and other beauracratic structures from whom they have been endeavoring to receive help resulting in their feeling helpless and wanting to give up, while those who could help have learned to lean on beauracratic structures to help those in need, thinking they need to do little or nothing other than that, resulting in their becoming unhelpful.

As Christians, we should know better than to rely on the government to help people in need. Sure we can support and/or advocate for government programs, however, we recognize that services are rendered when caring is needed. As Christians, we should also know better than to assume that all we need to do is to send a check to someone and we are then relieved of our responsibility towards others. Statistics indicate that the majority of Christians do not even tithe their financial resources, so that we are giving too little financially to charitable and church organizations, and expecting others to also do the grunt work of helping others, whether it is through governmental programs or relief organizations.

Its like the perfect storm of uncaring coupled with deep need. Perhaps the only way it could get worse would be for the government to cut programs as then the learned unhelpful would be relying on governmental programs that were not in existence, and the learned helpless would experience a further loss of motivation to attempt to fight for limited governmental resources.

To my mind, the answer is for me to get involved with my neighbor. I must tell you that that involvement is not often clean and easy either. I have a friend I am trying to encourage and support who looks to me for solutions and I have none. I sit with him and talk through the issues, I am his friend, I try to encourage him in the midst of the frustrations with the system, but I don't have the answers. What I do have for him is encouragement and friendship. He knows that when we get together for coffee, that he will be meeting with someone who cares about him, who listens to him and will try to help him if we can arrive at a course of action. Will I be able to help him to move forward, I hope so, but I make no promises. However, I also do not wash my hands of him in the assumption that the government or other agencies are taking care of him. I know better. I cannot do everything, but I can do something and what I can do I try to do and I think that is encouraging to him. It helps him to continue to battle the helplessness that the system is unconsciously trying to teach him. It also helps me through my friends encouragement to battle the unhelpfulness that the system is unconsciously trying to teach me.

Human service is always messy and not easy. The degree to which human service becomes regimented and easy is the degree to which it is excluding helpers, removing freedoms, and teaching helplessness. To paraphrase Dr. Julian Rappaport, when I use convergent thinking to solve human service problems I prove that I do not understand the problem.

So find those around you who are being devalued and encourage them. Then look in the mirror and ask yourself if you have bought the lie that helping is the government's or some agency's responsibility. Have you been programmed to be unhelpful?

McNair

Monday, July 16, 2007

Inclusion and exclusion

I was struck the other day by something. It may be obvious to you, but the notion of inclusion is not really an outcome. Inclusion is more of a strategy that has been applied at schools, particularly public schools in order to attempt to facilitate social integration. Inclusion is not the outcome, inclusion is the intervention, the strategy I might use in order to facilitate integration. It's like phonics is a way to teach reading. Phonics is not reading, it is a way to teach reading. Many people learn to read via phonics, but others don't. As a strategy to teach reading, phonics is pretty good. I am unsure whether inclusion as a way to teach integration is very good at all.

It has at times made me uncomfortable to say that I am not a big inclusion fan. When you say that, people think you are discriminatory against people with differences, like you don't want them around or something. But you see I am a big integration fan, maybe even a zealot. I think people with and without disabilities, for example, should work to be integrated together. I believe in the outcome, I just don't necessarily believe in the strategy many have attempted to use to facilitate integration, that being inclusion. Maybe it is just inclusion in its current form that I don't particularly like, but I must say that my perspective is supported by the lion's share of the empirical research. Inclusion as practiced by public schools does not really lead to integration. That is the reason I am not a supporter.

What might be some of the major reasons why inclusion is not working in schools? Could it be that...
Inclusion is something I expect students to do that will lead to integration.
Inclusion is something I expect others to do that will lead to integration.
Inclusion is something I do not do in my own live that will lead to integration.
Inclusion is something I do not do because I really do not want integration in my personal life.

You see we think it wonderful when children with and without disabilities are integrated, but we are unwilling to do it in our own lives as adults.

Once again, however, it is important to make the distinction that inclusion is just a strategy to achieve integration, it is not the outcome.

In a related way, I have been thinking about exclusion. Exclusion is also a strategy that people use deliberately or otherwise to teach, or to achieve an end. I have most often seen exclusion employed as a strategy to keep a group from changing. "If we integrate you, we will not be able to do things in the manner in which we have become accustomed to doing things. If we do not integrate you, we can keep doing things the way we always have done them." I think that is a reason why there aren't more people with various disabilities in local churches.
So in the same way that inclusion is a questionably successful strategy for facilitating integration, exclusion is a means which is a very successful for facilitating segregation.

The one thing I can say for those attempting inclusion, is that they are at least trying to get others to believe in inclusion and hopefully integration. But it is too often a do as I say not as I do kind of proposition, so no wonder it doesn't work very well.

But whatever we do, we should not practice exclusion because whether we know it or not, it is probably a more powerful form of instructional strategy, a more powerful intervention than inclusion. If we see someone being disruptive or having a seizure in a social setting, our response should not necessarily be to remove them from the setting. That is exclusion. Perhaps we might first think of what is best for the individual, at least for a moment. Might we stop for a moment, to determine whether there are flaws with the setting? Disruptions are not always bad. Disruptions can cause us to evaluate the way we do things. Disruptions can cause us to ask, "Is this the best way of doing things?" "Is exclusion of this indiviudal the only response we can offer?" Are we excluding because we just don't want to be confronted with the need for change? Are we so brittle that we cannot accommodate?

Disruptions can introduce us to people and ways of looking at people which we might not have considered before.

McNair

Saturday, July 14, 2007

Write love

My son, Josh, turned me on to an cool story of love, acceptance and forgiveness. Check it out. TO WRITE LOVE ON HER ARMS by Jamie Tworkowski

In the story it states,

We often ask God to show up. We pray prayers of rescue. Perhaps God would
ask us to be that rescue, to be His body, to move for things that matter. He is
not invisible when we come alive. I might be simple but more and more, I believe
God works in love, speaks in love, is revealed in our love. I have seen that
this week and honestly, it has been simple: Take a broken girl, treat her like a
famous princess, give her the best seats in the house. Buy her coffee and
cigarettes for the coming down, books and bathroom things for the days ahead.
Tell her something true when all she's known are lies. Tell her God loves her.
Tell her about forgiveness, the possibility of freedom, tell her she was made to
dance in white dresses. All these things are true.

Why is this interaction with the girl in the story, the love showed, the kindnesses expressed, the forgiveness of God explained, all of these acts of love, why are they important?
Are they important because of who the girl is or who she might be?
If she were to become a great poet, would those acts be now justified?
If she was to be saved from her addictions would those acts be justified?
If she were to become a loving mother, would the acts be justified?
If she were to become a Christian, would the acts be justified?
OR
If she were to be unable to escape her addictions would those acts be unjustified?
If she remained an addict for the remainder of her life, would those acts be unjustified?
If she were never to become a Christian, would those acts be unjustified?

Can you see acts of love and kindness and forgiveness are of value within themselves? The recipient of those acts is largely irrelevant. Sure our heart goes out to a woman who condemns herself in profane terms, writing her indictments with a razor on her skin. But what of a woman who has been socialized to believe that she is worthless, or would be better off dead, or should have been the focus of an abortion to prevent her life? Does our compassion change if the woman has down's syndrome, or a birth defect of some kind?

I believe the story shared at the website is a true story, and may God help that woman to escape her addiction and her self abusive behaviors and find forgiveness. But may God also help His church to escape her addiction to comfort that leads to exclusion, exclusion which is really a form of self abuse through the exclusion of people God loves and wants in his church, and may He through the church's repentence provide forgiveness leading to repentence.

In the story, the girl condemns herself by writing f*** off on her arm. What is the church writing on the arms of persons with down's syndrome or mental retardation or mental illness? I pray that as the website says, we are writing love on those people for the sake of writing love on those people. That is the end. For the benefit we receive when we show love to another without any expectations or for no other reason than the showing of love.

McNair

Thursday, July 12, 2007

Church as community recreation

Teaching Exceptional Children is a kind of a research magazine put out by the Council for Exceptional Children (CEC), perhaps the largest special education professional organization in the United States. In the July/August 2007 edition, there was an article entitled, "Including students with moderate and severe disabilities in extracurricular and community recreation activities: Steps to success." The article by Kleinert, Miracle and Sheppard-Jones briefly describes a survey of special education teachers that the authors completed. They found the following:

The five most frequently noted community activities in which at least one
of their students participated included church social activities (65.5% of the
teachers responding to tht question indicated that at least one student
participated); peer social activities not related to schools, such as going to
the movies or shopping (58.7%); church youth groups (56.3%); community sports
teams (25.0%); and church clubs (21.4%).

This is not totally surprising as other researchers have pointed out the involvement of persons with disabilities in religious groups. This is just some of the latest information. Later in the article, the authors make the following statement.

Several findings were somewhat surprising. First, the high rates of
reported participation in such activities as church youth groups suggest that
teachers of students with significant intellectual disabilities may want to
encourage their students to become involved in these opportunities if the
students and their families are members of local congregations. The high
rates of participation also suggest that teachers should assist families in
ensuring that their sons or daughters are meaningfully included in youth
activities for their church, synagogue, or faith based organization...

I have been speaking about and writing about this potential for community integration for many years now. I have always thought it would be ironic if secular groups were the ones who ultimately encouaged faith groups to be more involved in the lives of persons with disabilities. I will never forget a presentation I once made at a national conference of a secular special education organization. I presented on the potential of faith groups to be the answer for community integration of adults with cognitive disabilities. At the close of my presentation, one attendee raised her hand and said, "This is so obvious. Why haven't I ever heard about this before?" It is obvious, and there are many reasons one might not have heard of it ranging from secular bias to church inaction. As this article illustrates, however, secular organizations such as CEC might be recognizing the potential of the church. Let us pray for more research from a secular perspective which would help secularists.

This article discusses what is already occurring in the lives of children with moderate to severe disabilities. It is wonderful when the church surprises secularists with their inclusive practices. Both because it causes them to second guess the negativity sometimes evidenced toward churches in general, and because churches are making a difference in the lives of people in a significant way. A difference in which no other group has greater potential.



McNair

Wednesday, July 11, 2007

Divorce and children with down's syndrome

In the recent American Journal on Mental Retardation, there is an article entitled, "Divorce in families of children with down syndrome: A population-based study" by Urbano and Hodapp (vol. 112, number 4, 261-274, July 2007). The abstract states the following...
In this study we examined the nature, timing and correlates of divorce in
families or children with Down syndrome (647), other birth defects (10,283) and
no identified disability (361,154). Divorce rates among families of
children with Down syndrome were lower than the other groups. When divorce
did occur in the Down syndrome group, hoever, a higher proportion occurred
within the first 2 years after the child's birth.
The article goes on to mention the "Down syndrome advantage" that being that "families of children with Down syndrome cope better than do parents and familes of children with other disabilities." Over the 12 year period studied (1990-2002) the divorce rate was 7.6% in families with children with down's syndrome, 10.8% in the comparison group (not identified disability) and 11.2% in the other birth defects group. The one caviat finding relative to down's syndrome, was, "Of families who divorce after the birth of the index child, families of children with Down syndrome were almost twice as likely to divorce during the first two years of the child's life."

Finally, the authors make the following statement in the discussion section of the article.
Taken together, the results of this study have important practical and
theoretical implications. Practically, parents of newborns can be
counseled about the risks and timing of possible marital discord. For many
families, especially those steeped in the still commonly heard notion that
"divorce is rampant" among families of children with disabilities, it may be
comforting to know that divorce is neither a necessary nor a common outcome of
having a child with Down syndrome.
They go on to say,

...social workers and early interventionists can educate parents about
common stresses that arise during the earliest years. Those parents with
less education can be especially targeted, as can those parents-especially
fathers-who are both less educated and who live in rural areas...neither of the
United States' two main parent groups in Down syndrome currently feature special
programs designed for outreach to rural families.

What wonderful opportunities for the church. Counseling early on in the life of a family with a child with Down's syndrome and outreach to rural families in particular. There are a lot of Chrisitan churches in rural settings. How about stepping up to the challenge.

McNair

Tuesday, July 10, 2007

Community integration through the public schools

The following is the abstract from a study published in Exceptional Children, a journal of the Council on Exceptional Children, entitled "A National Study of Youth Attitudes Toward the Inclusion of Students with Intellectual Disabilities" by Siperstein, Parker, Bardon and Widaman (2007, Vol. 73, No. 4, 435-455).

The authors surveyed a national random sample of 5,837 middle school students on
their attitudes toward the inclusion of peers with intellectual disabilities
(ID). The national sample provided results that were accurate, with a margin of
error of +/- 1.4%. Findings indicated that youth (a) have limited contact with
students with ID in their classrooms and school; (b) perceive students with ID
as moderately impaired rather than mildly impaired; (c) believe that students
with ID can participate in nonacademic classes, but not in academic classes; (d)
view inclusion as having both positive and negative effects; and (e) do not want
to interact socially with a peer with ID, particularly outside school.
Structured equation modeling showed that youth's perceptions of the competence
of students with ID significantly influence their willingness to interact with
these students and their support of inclusion.

Those of us in special education, know that inclusion has been the perspective of many in education for the past 15-20 years. You must understand that there are many perspectives on inclusion in the public schools. There are those who are total zealots who feel that the only place for any child, independent of their disability is the "regular classroom with their age peers." There are others who feel that children with disabilities should be segregated into separate schools where they can receive "intensive therapy." Others hold differing positions somewhere in the middle, although the politically correct position is much more toward the inclusion in the regular class over the segregation position. There have been many studies, largely anecdotal that speak of the trememdous benefits to children with and without disabilities as a result of inclusion. There have not been many empirical studies supporting the inclusion position in terms of long term integration benefits.
Now one cannot take a position on the basis of one study, but I must admit that I find this study quite sad. You see, at least in regard to the children who participated in this study and the larger group they may represent, inclusion is not working very well.
We see that in the summary results,
limited contact in classrooms and school,
students perceived as more impaired than they are,
inclusion has both positive and negative effects, and
typical children do not want to interact socially with a peer with ID, particularly outside school.
The question remains in my mind as to whether or not the school, in particular the general education classroom, is the best place for integration. The assumption from some researchers and inclusion zealots is that it is the best place. The authors of the article conclude that their research might demonstrate that, "inclusion is not working; that the policies and practices put in place have not reduced or eliminated the social barriers to inclusion for students with ID; and thus, that the social goals of including students with ID in general education enviornments may not be attainable or even realistic" or contrarily perhaps "we have not yet done enough to promote inclusion and that we cannot rely on physical inclusion by itself to foster positive attitudes." What the authors do conclude is, "What the results of this survey do indicate is that finding ways for youth to witness the competence of people with ID would go a long way toward fostering positive attitudes." How many opportunities are provided in schools for children with intellectual disabilities, with mental retardation to demonstrate competence when the point of integration is the cognitively oriented, regular class curricula? We set them up for failure in many ways and then are surprised when they are seen as less than competent.
The saddest of the findings, however, was that typical children do not want to interact socially with a peer with ID, particularly outside school. That is probably one of the reasons why thsy see their peers as more disabled than they actually are...they don't know them. The study implies that peer pressure would cause the lack of interaction outside of school, which I don't quite get. I could see peer pressure in school, but outside of school there would be more opportunity for privacy in ones social interactions. But what type of setting would allow a person with an intellectual disablity to be seen as competent outside of school for the purposes of social integration. Many settings might be imagined, however, as this is "disabled Christianity" you know my obvious suggestion is the church. Schools cannot find the key to helping persons with disability to demonstrate competence so that positive attitudes might be developed. The Christian church has the potential to provide myriad opportunities for people with various diabilities to be seen in a competent, positive light, which the authors of the article contend would lead to community integration.
Schools have set the tone for integration through special education programs and efforts at inclusion, but they are failing at long term community integration I would suspect. Once again, can you see that the schools are not the answer to the integration question? Once again the answer for integration falls squarely at the feet of the church.
McNair

Thursday, June 28, 2007

Kindly patitudes versus the truth

I read a story the other day sent out by a person in the disability community whom I respect. I won't share the story here, but the jist of it was that a religious leader said something that was encouraging when others were being discouraging about this leader's child with a cognitive disability's presence in the worship service. Obviously the words that were shared made the parent feel good, good enough to share the story with others. Some of the reaction from others, also leaders in the disability community was also positive. I just kept silent.

You see, it doesn't help if we share platitudes, no matter how kindly they sound or how kind our intentions are if they aren't the truth. I have been in settings were a severely disabled person was screaming or making very loud noises while someone was trying to teach a class. Kind people around will say, "He's praying" or something to that effect. Well I have been around a lot of people with severe to profound disabilities, and I will tell you that many do not have the cognitive ability to pray, or to talk or to understand a great deal of what is going on around them. Some scream for a particular reason and some just scream. For me to even say they are praying when they are screaming is really to demean them, to treat them like some kind of a child or something because if I was screaming you wouldn't think I was praying. The point is, if someone is screaming, they are screaming they are not praying. If someone is swearing, they are swearing they are not praying or something else. The question is, how do we make places for people who because of the severity of their disability will scream or swear or do whatever it is that they do?

Could I be in a worship service where someone in the audience was screaming? Not if I am supposed to sit quietly and listen to someone teaching me. Worship would have to change, or the teaching would have to change, or the person would have to get quieter or be removed. As a church, our response has been that the person has to be removed or get quiet. My response is not to say they are praying and should stay when they are screaming. My response is that the way we do worship needs to change, or if it is a teaching situation, the teaching situation would need to change such that a person who is screaming would be able to be a part of the teaching situation. Now not everyone should be a part of every teaching situation. I have trouble enough with teaching or taking college classes when the students are quiet. There are settings where screaming people are not welcome because of the situation. Unfortunately, church worship services as designed, are such places. There is a problem with that. The one time during the week when we gather as Christians, the church service, is the most socially restricted of any of the times we gather as Christians. Worship has largely become a time where I sing, or sit or stand, but otherwise I am to be absolutely silent (I recognize that is not the case for all Christian worship gatherings, however, largely it is).

It would seem that the largest gathering would be the time when there would be the MOST latitude in behavior, or openness in what is accepted socially. So if I attempt to be a part of the larger gathering but can't because of my disability, I would have to argue that it is the Church's fault. Particularly when as a person with a cognitive disability, there is literally no other place for me to go, no place for me if I am a screamer, or whaever my social difference is. My best hope is to be where the most people are, and unfortunately that is where the most restrictions on behavior are present.

We have got it entirely backward. Sunday morning worship should be the most wide open time. It should be noisy and joyful. Maybe there is some instruction, but it is understood that there is going to be a lot of activity in the midst of the instruction. People might be walking around, or talking to each other, or even interrupting the speaker with questions. But it is a jubilant time where we celebrate our gathering together as all Gods children with our slight or significant differences. Then if you want to parse out the scriptures in a quiet place, we go to a classroom, and that is were particular behaviors are required. You might have to know Greek for a class or you might have to be a parent or have some other characteristic. That is the place for discrimination, not the greater group gathering of the church. And there should be a place for everyone in one of those smaller classes or groups. Literally, anyone who would come to church should have a place where he can be himself (in terms of differences of disability) and be accepted. That is were we need to go in terms of changed structures.

It does no good and it is untrue to say people with mental retardation who are screaming are praying. Don't offer platitudes no matter how kind, about who they are. Rather, make a place for them and open things up a bit. Worship settings should not be the most brittle, the most socially restrictive of all church settings.

McNair
(fcbu)

Thursday, June 21, 2007

"Church asks mom, disabled child to leave"

The following is a link to an article forwarded to me by a colleague, Kara, available on Unionleader.com entitled "Church asks mom, disabled child to leave." Please read the article and the comments.

The first question you must ask, is why this would be considered newsworthy? I think it's the old dog bites man is not a story, man bites dog is a story. Church is kind to the disabled would not be a story (that is what would be expected) but "church asks mom, disabled child to leave" is a story even to secular people, because it is not what you would expect from a church. Even a secular newspaper/website has sufficient understanding of the Christian faith to know that that shouldn't happen. Why are Christians themselves so slow to understand? Why are church leaders so slow to understand?

But I would refer you to the comments made by people in response to the article and there are many. Interesting to see the defensiveness at times and the outrage at what is deemed unChrisitan behavior.

If they only knew...
McNair

Articles by Jeff McNair

If any of you who visit this blog would like to receive a small packet of articles I have written on disability/disability ministry, email me with you regular address and I would be happy to send them to you.

You can email me at jmcnair@calbaptist.edu

Thank you for your interest.
McNair

Wednesday, June 20, 2007

Article link from ESA online.

An article I wrote a couple of years back is part of a features section of ESA (Evangelicals for Social Action) online. You can view the article here There are no retarded people in St. Louis

Let me know what you think?
McNair
(fcbu)

Wednesday, June 06, 2007

The Institute on Disability Studies at California Baptist University

I am excited to share that this past week, California Baptist University approved The Institute on Disability Studies. Although we plan to work in a wide variety of areas related to disability, one of the distinctives of The Institute will be that it will look at disability/disability studies from a Christian perspective. I am unsure if there are other (if any) similar institutes at other Christian universities. If we are one of the first to develop such a program, it is our goal to be the first of many in the future.

The foci of The Institute will be faciliting disability studies research, facilitating graduate programs in disability studies at CBU, development of research materials and facilities, various training opportunities, and providing outlets for research in disabilty studies.

We are currently seeking funding for The Institute, and hope to very soon have further announcements to make concerning partners/collaborators in our Institute work. If you represent a funding organization and would like to work with us, we would be pleased to dialogue with you. The Disability Studies Institute at California Baptist University is truly a new and unique funding opportunity, heretofore largely unavailable anywhere. As we develop, website information will be provided at this blog and elsewhere. You can also contact me at jmcnair@calbaptist.edu

May God bless our efforts!

McNair
(fcbu)

How to ask the questions?

Michael Oliver is an author in disability who I really enjoy reading. He makes me think. In his book with Bob Sapey, Social Work with Disabled People (2006, third edition) he relates two sets of questions asked of persons with disabilities. One set from a 1986 disability survey and the other a set of alternative questions he (Oliver) developed in 1990. He makes the point that respondents are influenced by the way surveys ask questions. In particular, he relates that the particular survey done in 1986 causes respondents to think of themselves as inadequate by the way questions were asked. I want to juxtapose the two sets of questions so that you can see the difference clearly. These questions and the discussion surrounding them can be found on pages 60-61 of the book.

1986-What complaint causes your difficulty in holding, gripping or turning things?
1990-What defects in the design of everyday equipment like jars, bottles or tins causes you difficulty in holding, gripping or turning them.

1986-Are your difficulties in understanding people mainly due to a hearing problem?
1990-Are your difficulties in understanding people mainly due to their inabilities to communicate with you?

1986-Do you have a scar, blemish or deformity which limits your daily activities?
1990-Do other people's reactions to any scar, blemish or deformity you may have, limit your daily activities?

1986-Have you attended a special school because of long-term health problem or disability?
1990-Have you attended a special school because of your education authority's policy of sending people with your heal problem or disability to such places?

1986-Does your health problem/disability mean that you need to live with relatives or someone else who can look after you?
1990-Are community services so poor that you need to rely on relatives or someone else to provide you with the right level of personal assistance?

Oliver advocates for what he calls "the social model of disability". He states, "The argument for a social model of disability is that the causal relationship begins with the reactions of mainstream society to people with impairments that oppress and exclude them. Part of this oppression is the imposition of an understanding of disabiltiy that blames the individual" (p. 60).

I had the opportunity to address a small group of people this past week at Community Christian College in Redlands, California. During the question and answer time at the end, a gentleman asked an interesting question. "Why do you think people with disabilities don't go to church?" The question, although a good one, reminded me of some of the questions above.
What is it about people with disabilities that causes them to not be church goers?
What is it about being disabled that makes you not want to go to church?

The answers I provided seemed unsatisfactory to several in attendance. You see my answers related to church attitudes, or leadership attitudes, or changes which needed to occur within the church. Those unsatisfied wanted me to provide answers about the people with disabilities. The only answers I could provide were things like, people don't like to be around other people who are impatient with them, people don't like to be around other people who don't they are important, people don't like to be around other people who wish they weren't there, people don't like to be around other people who don't want to have to change the things they do in order to make a more accepting environment. Or even something as simple as people will not go places where they are not invited to go. The answers had little to do with the people with disabilities and much more to do with the unacepting environment. I could tell the questioners rejected my response saying they couldn't or wouldn't believe that churches were like that. Obviously churches are loving and caring and accepting places. Therefore if disabled people were not in churches in numbers reflecting the community, there was something wrong with the disabled people.

McNair
(fcbu)

Friday, May 25, 2007

God's works and God's grace

In the past I have commented on the John 9 passage about working the works of God. Click here to see the post. The implication is that we have the opportunity to "work the works of God" we have the opportunity to be his hands to people here on Earth. Recently I was thinking about that verse in combination with the 2 Corinthians 12:9 passage were Paul is told by God, "My grace is sufficient for you" when he asked to have the thorn in his flesh (some form of a disability) removed. If you put these two verses togethe, you come up with an interesting lesson.

One of the greatest works of God is the provision of His grace in a multitude of ways to people. It occurred to me that one of the implications of God's statement, "my grace is sufficient for you" could be that one of the ways in which God makes his grace sufficient is through the works of Christians, through the work of His people. God's grace goes way beyond those things that people do, and is not dependent only upon what people do. Yet there might be an aspect of this connection that people are or are not recipients of an aspect of God's grace because of what the Church does or does not do.

The Joni and Friends organization has reported the statistic that 95% of people with disabilities are unchurched. That implies that in as much as 95% of the disabled population, the Church is not taking advantage of the opportunity to work the works of God, to be agents of His grace, to be sufficient to people with disabilities. It is a very sad statement. We have the potential to be agents of God's grace and we choose not to be. We have the potential to have the "works of God" manifested through us and we say, "Nevermind."

McNair

Tuesday, May 22, 2007

The Kingdom of God in your neighborhood

I had the distinct priveledge this past week of speaking briefly at the Amos Fellowship in Riverside, California. Pastor Julio Andujo was interested in ways in which the church could engage the community, so I was invited. I must admit I was exhortive in my comments but the church was open and receptive. Pastor Andujo compared my comments to someone telling you you have crumbs on your face or that your clothing doesn't match...that is caring enough to point out ways you might improve what you are doing. Several congregational members approached me between services to tell of their experiences with persons with disabilities, some of whom were actually parents of children with disabilities. Many expressed appreciation that the issue of disability was raised in their church.

Paston Andujo's sermon had to be one of the most powerful presentations of God's word that I have heard in recent years. He spoke about the Kingdom of God, specifically referring to it as a place where we level the playing field. We provide access to God's saving grace through our leveling of the playing field. Although he was not speaking specifically to issues of persons with disabilities in the church, his comments were obviously applicable.

He then challenged the congregation with the question, How is the Kingdom of God doing where you are? How is the Kingdom of God in your neighborhood? How is the Kingdom of God in your home? How is the Kingdom of God in your school? Great questions!

As we level the playing field so people can have access (not just physical access) we give people access to God's word, to God's people, to the church. As a point of evaluation, we can then ask ourselves, How is the Kingdom of God doing for people with disabilities in our sphere of influence. I would ask you, how is God's grace begin shown, being demonstrated in your sphere of influence?

McNair

Monday, May 21, 2007

Genetic Information Nondiscrimination

It is called The Genetic Information Nondiscrimination Act of 2007, and begins with the heading, "To prohibit discrimination on the basis of genetic information with respect to health insurance and employment." The full text of the bill is available here
http://www.govtrack.us/congress/billtext.xpd?bill=h110-493
You can also get other information regarding the bill here
http://www.govtrack.us/congress/bill.xpd?bill=h110-493
The President apparently supports the bill as evidenced by the following statement
http://www.whitehouse.gov/omb/legislative/sap/110-1/hr493sap-h.pdf A critical aspect of the statement says, "The Administration appreciates that the House Bill clarifies that the bill's protections cover unborn children."

As I have reviewed the bill, there are many aspects which are very encouraging. However, there is one aspect that is not explicitly stated in the bill which causes concern to me. That is, in searching the bill there is no mention of "prenatal diagnosis" or "unborn children" that I could see relative to genetic information and its effect particularly on insurance benefits.

The bill has passed the House and is now headed for the Senate. I found out about it through World magazine which had a brief mention in the "Making the rounds" section.

In his book "The future of the disabled in a liberal society" Hans Reinders raises the spectre of parents going ahead with the birth of a child who has been prenatally diagnosed as having some disability, and as a result being denied insurance benefits for that child. I wish that aspect of the use of genetic information in regards to insurance were spelled out more clearly in the bill. It would close the door on practices which would support the abortion of children with prenatally diagnosed disabilities.

McNair

Friday, May 11, 2007

"Don't hate the player, hate the game"

"Don't hate the player hate the game" is a saying that you will sometimes hear people say. The idea is, for example, good looking guys tend to date good looking girls. That is just the way it is. So I shouldn't hate a good looking guy (the player) because the good looking girls like him. I might hate the fact, however, that good looking girls and good looking guys like each other (the game).

So what could this possibly have to do with disability... bear with me.

It seems in society today people with disabilities are ostracized, and misunderstood, and just generally not treated very well. At least not as well as those without disabilities (the game). I hate the game. I hate the fact that that is the way of the world. But should I not also hate the player?

My faith is clear that I shouldn't hate anybody, so I do my best not to. But if the player says that I treat people the way I do without thinking, because that is the way I have been socialized he is worthy of disdain.

At the recent Social Role Valorization training I attended, Dr. Wolfensberger stated the following:
Collective unconsciousness can be so vast that even the most global
societal policies may be undeclared, unexplicated, unacknowledged, and even
denied. Thus for many people to all work toward a bad thing requires no
deliberate or conscious conspiracy. While this is well-known by social
scientists, most citizens are not aware of how they themselves can be totally
unconsciously acting out undeclared, large-scale, societal policies in their own
daily lives (from "A leadership-oriented introductory social role valorization
(SRV) workshop, February 27, 2007)

It is one thing to recognize the game and just shrug your shoulders and say, don't hate the player, hate the game. It is quite another to be a player in the game and be so unaware that you are working toward a bad thing. To be unaware and yet working on the side of the bad thing. Churches need to wake up to their participation in the bad thing. Discrimination is the way things are, it is the game, but players have a choice to play or not in the discrimination game.

Changing the game begins when you wake up as a player.

McNair
(fcbu)

Wednesday, May 09, 2007

Pillow angel surgery broke the law

So it turns out that the procedure to keep Ashley as a child was illegal, because she was sterilized without court approval. CNN.com reports,

The Washington Protection and Advocacy System, a private group vested with
federal investigative authority for people with disabilities, found that Seattle
Children's Hospital and Regional Medical Center violated the constitutional and
common law rights of a girl identified only as Ashley by performing a
hysterectomy without a court order from the state.
"Washington law specifically prohibits the sterilization of minors with developmental
disabilities without zealous advocacy on their behalf and court approval," said
Mark Stroh, WPAS executive director, in a statement.


The article at CNN.com gives the impression that although they regret not following the law, they in no way regret the procedure. In a later quote from the article,
It was like seeing a baby in a much larger body," said Dr. Douglas Diekema,
director of education at Treuman Katz Center for Pediatric Bioethics in Seattle
and chairman of the bioethics committee of the American Academy of Pediatrics,
who was brought in to consult on this case.
"She would never talk, never walk, and was dependent on her parents to meet all her needs. Her cognitive function was the equivalent of that of an infant, unlikely to ever change." Family members call her their "pillow angel."

So the chairman of the bioethics committee of the American Academy of Pediatrics comes down on the side of the surgery. How many times have you heard stories about doctors telling someone they will never walk, or never run, or never talk or never do whatever the doctor thinks they won't do. If nothing else, this should tell you that

THE MEDICAL PROFESSION CANNOT BE TRUSTED WHEN IT COMES TO DECISIONS ABOUT PEOPLE WITH DISABILITIES

Understand me that I have dear friends and family members who are medical professionals. They are incredible people who do wonderful things. But as a group, doctors just don't get it about disability. To Dr. Diekema, the sterilization of the little girl was not a problem of ethics it was a problem of legality. Its like, you didn't get a permit before you built the addition on your house. You didn't really do anything wrong, you just didn't follow the letter of the law.

Later in the CNN.com article,

Writing on their blog, her parents said, "Ashley's smaller and lighter size
makes it more possible to include her in the typical family life and activities
that provide her with needed comfort, closeness, security and love: meal time,
car trips, touch, snuggles, etc."

So closeness, security, love, touch, and snuggles are dependent upon a person's size.

"Sterilization is not the intent of the 'Ashley Treatment,' but a byproduct of
it," they wrote, adding that while they support laws protecting against
involuntary sterilization, they believe the law is "too broadly based" to
"distinguish between people who are or can become capable of decision-making and
those who have a grave and unchanging medical condition such as Ashley."

So, removing one's uterus causing sterilization is a by product of the procedure. Also, people who are perfectly healthy but have severe mental retardation now are characterized as having "a grave and unchanging medical condition." To label a person as having "a grave and unchanging medical condition" only sets us up for the next step of taking them out of their misery via euthanasia. After all, as Dr. Diekema (quoted above) said, "disabled children (who) are traumatized by menstruation." So if you are traumatized by a normal aspect of being a human being, we don't help you to work through that trauma. We sterilize you. We take our your uterus. Also, don't you think it is odd that this little girl who is apparently so disabled, so mentally handicapped with her "grave and unchanging medical condition" would even know she was menstruating?

Do you see how these people speak out of both sides of their mouths? She will be traumatized, but she is too disabled to understand the ramifications. Either she isn't traumatized and doesn't understand or she is traumatized and does understand. However, in spite of her understanding of what is done to her, I understand what was done to her and therefore I need to speak up, speak out against it. I hope you will as well.

As Mark Stroh of Washington Protection and Advocacy System stated in the article.

"The implementation of the 'Ashley treatment' raises serious concerns about
the continuing discrimination faced by people with disabilities --
discrimination which is often based in stereotypes about their potential and
value as individuals"

For the complete text of the article, visit the following website.

http://www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html?eref=rss_topstories

McNair

Thursday, May 03, 2007

Impaired people

At the disability Sunday program at my church mentioned in the previous two entries, I was one of the speakers. At one point in the service, I asked all of the people in the room who had some kind of mental or physical impairment to raise their hand. I don't know what I thought about the numbers of people in a room who would have an impairment, but it appeared to be well over 50% of the group in each of the three services. I was surprised. I then talked about the teasing kids get as kids about wearing glasses, or any other difference they might experience. It seemed to me that really connected with the audience as they were finally seeing what the experience might be like to be teased, or even devalued by a society that doesn't tolerate differences. They don't tolerate difference even though (judging by my church, and the average types of people who attend there and extrapolating to the larger population) they themselves have impairments, have disabilities. It was very eye opening to me.

Mark Brown, talked about the image of God in a way that really connected as well. He spoke in reference to Toby Hoff, who had presented earlier in the program and who uses a wheelchair. He said, you might see him as a man in a wheelchair, but God sees him as one created in the image of God and crowned with the honor and glory that comes with representing that image.

The service ended with Mark inviting people to identify with those with disabilities and to evidence their solidarity by coming forward and standing around a table set with bread and a glass of juice where individuals with disabilities were already sitting. Just about the whole congregation came forward and joined at the table, spilling down onto the floor just before the stage. It was very powerful as many among those who came forward were weeping or very emotional. I felt as if the connection had been successfully made between people with and without impairments and people with various disabilities. It was very powerful. I was surprised as the wonderful response from the congregation.

Our question, is what to do next with this outpouring of love and support from our congregation. First of all I think God will bless them for their response, He is working in their hearts. But where to we go next, what do we do with this outpouring as a church. I am looking forward with anticipation to see where our leaders will take us. Please keep our church in your prayers.

McNair

Tuesday, May 01, 2007

Video of Disability Sunday at Trinity Church 4/29/07

In the previous post, I shared my notes for the portion of the sermon I was to give for our disability awareness Sunday, at my church, Trinity Church in Redlands, California. The program was a great success and I think the Lord was honored. If you would like to view a video of a portion of the program, you can visit the following web page. http://trinityonline.org/cgi-bin/MediaList.cgi?section
Click on the link to the sermon entitled, "A place at the table."

The video begins with an interview with Toby Hoff. Toby hosts a weblog that you can visit at http://amanforchrist.blogspot.com/ Toby is interviewed by Rachel Watters.

After Toby, Mark Brown speaks about the story of Mephibosheth from the book of Samuel. I am up next talking about treating people with disabilities with dignity. Mark is then on again with more about the Mephibosheth story, I provide more on what to do to help and include people with disabilities, and then Mark brings things to a close.

Anyway, check it out if you are interested.

McNair

Friday, April 27, 2007

Disability Sunday 4/29/07

Here basically are the notes for comments I plan to make this Sunday at my church. We are celebrating our second Disability Awareness Sunday. I am sharing the pulpit with Pastor Mark Borwn, our great college pastor, an all around good guy. He will be talking about the story of Mephibosheth (check it our if you haven't read it before...use your concordance or look online). I will give a couple of brief parts of the larger sermon. Anyway, this is the gist of what I plan to say.

Viewing the disabled with dignity/Seeing people as like me
I have an impairment, I wear glasses. Without my glasses, I would not be permitted to drive a car, and many of you would look much better to me.

How many of you have some mental or physical impairment? We have got a lot of impaired people in here.

Impairments vary, and their seriousness to your life is a matter of degree. A matter of
-what it is
-when it occurred

But the impact on your life is much more related to how society perceives the impairment than it is to the actual impairment

For many of us, glasses have made our vision problems pretty much irrelevant to our lives. Yet we probably grew up with taunts of 4 eyes, or egghead, or were made to feel we were either not entirely a man, or an unattractive woman. These experiences are a simple example of how society dictates the experience of impairment. Now, if this is the experience with wearing glasses, imagine the experience of using a wheelchair, or being blind, or having cerebral palsy, or autism or mental retardation. People can do fine with these impairments if society will allow them to. People can do fine if the church will support them.

These types perceptions taught by society are the kind that make Mephibisheth, grandson of the King, refer to himself as a “dead dog” (1 Samuel 24:14)

We compare ourselves with others like children, “Who do you love the best?” “Who is your priority?” We judge people on the basis of their social skills. But God cuts us to the quick
-I love you all (Revelation 1:6)
-You are all created in my image (Genesis 1:26) We look in the mirror, that is obvious…but we look at the person with a disability and wonder
-Who made your mouth? (Exodus 4:11)
-My grace is sufficient for you (2 Corinthians 12:9)

One of my friends in the Light and Power class is a man named Eddie. When we are together, Eddie has complete access to me any time. As a result, just about every week, in the midst of our lesson, Eddie will come up to me, put his face forehead to forehead with mine and together we talk about hot dogs, or pizza or toys or Christmas. I stand there as a university professor with a Ph.D. from a prestigious university. Eddie stands there as a man who has experienced severe mental retardation all of his life. As we stand there together...
-We are both loved exactly the same by God
-We are both equally created in the image of God
-We were both made by God
-God’s grace is sufficient for us both.

In my mind, if I am uncomfortable with him, it is MY problem. I need to change to see him as God sees him.

The more time you spend with people with disabilities, the more you see them as the same as you.


Treating the disabled with dignity
In thinking through how we treat people with dignity, a good verse to reflect on is Micah 6:8. The verse says, "He has shown you, O man what is good and what the Lord requires of you. But to do justly, and to love mercy and to walk humbly with your God."

Micah 6:8
1. Do justice
Here is a quote from Paul Longmore's essay, "Why I burned my book." He states,

I-and most disabled Americans-have been exhorted that if we work hard and
"overcome" our disabilities, we can achieve our dreams. We have heard that
pledge repeatedly from counselors and educators and "experts," and from our
government too. We have seen it incarnated by disabled heroes on television,
those plucky "overcomers" who supposedly inspire us with their refusal to let
their disabilities limit them. We are instructed that if we too adopt that
indomitable spirit and a cheerful attitude, we can transcend our disabilities
and fulfill our dreams.
It is a lie. The truth is that the major obstacles
we must overcome are pervasive social prejudice, systematic segregation, and
institutionalized discrimination. Government social-service policies, in
particular, have forced millions of us to the margins of society.
The church has tremendous opportunities which have been laid before it to do justice and facilitate justice for persons with various disabilities. We need to work to part of the justice doers, not a contributor to the injustice.

2. Love mercy If mercy has been done to you, you will love mercy. If you love mercy, you should also do mercy. Matthew 25, tells you the kind of things that mercy does.

It gives a drink, or something to eat.
It provides clothing.
It visits those who are alone or invites strangers in.

These are not difficult things to do.

My son Josh has developed a friendship with a man named Mark. Although Josh lives in a different city, Mark always talks about Josh as his Chipotle buddy because they go to Chipotle together. Josh is able to take Mark out probably once a month or so. Yet Josh must be the topic of a third of Mark's conversation. Do you see how important such a small thing as taking somebody out for a burrito can be? The burritos are great, but it is the friendship, it is the nickname, it is knowing that you are thought about and remembered, it is the caring that comes with one meal a month that brightens the live of another human being.

People with disabilities often as a result of society's treatment of their impairments, live in poverty. They may be the poorest people in your church. Does the Bible encourage us to help the poor?

It is also a Biblical principle to do mercy particularly to those who cannot do mercy back to you.

Joni and Friends estimates that 95% of persons with disabilities are unchurched.

3. Walk humbly with God

Once again, God tells us that people with and without disabilities...
-are both loved the same by God
-are both equally created in the image of God
-were both made by God
-grace is sufficient for us both.

John 9:3-5 says,"

Neither this man or his parents sinned" said Jesus, "but this happened so that
the work of God might be displayed in his life. As long as it is day, we must do
the work of him who sent me. Night is coming when no one can work (NIV).

Jesus said this in response to his disciples asking about a blind man they encountered, "Who sinned, this man or his parents?" The disciples were wondering who's sin caused the blindness. Merril C. Tenney, the Bible scholar wrote that this passage might be translated in a different way. Here is Tenney's translation.


Neither did this man sin, nor his parents" said Jesus. "But that the works of
God should be made manifest in him, we must work the works of him that sent me,
while it is still day; the night cometh when no man can work.

We show grace to people when we give them our time. We honor people when we give them our time. We say, "You are important to me."

Jean Vanier says valued people hardly have any time while devalued people have lots of time. We are God's hands in giving grace to people who need it through what we do with our time, although small.

We have generated a list of small things you might do to help a devalued person that is available outside at the table.

SMALL THINGS…But look again at Matthew 25, as apparently it is these small things that God appears particularly interested in.

McNair

Tuesday, April 24, 2007

being certified as a volunteer

Over the past year or so, I have been trying to consistently visit a group home for adult friends with cognitive disabilities in my community. Most Monday nights, I show up with a couple bottles of coke and some kind of snack (ice cream, crackers or whatever) and just hang out with the folks for an hour. We will play a board game, or have a catch with a baseball, or sometimes I will bring my guitar (I have just started to learn to play at my advanced age). The people who run the group home are great! They are wonderful people, and Christians at that.

It was interesting, however, that last night I was asked to be fingerprinted. No rush, or no questions about my motivations or anything, just the protocol of the group home's certifying body. I mean it is no problem for me to get fingerprinted, and I will get it done right away, but as with a lot of procedural things, it caused me to pause a bit.

On the one hand, I am happy that those who oversee the lives of persons with disabilities are cognizant of the potential of abuse by people in the community. I am confident that there have been those who have abused the trust given to them and have done evil things to vulnerable people. On the other hand, however, it bothered me that to be a friend who is involved in the life of a person with mental retardation, I can't just be a friend. I have to be "certified" by an agency as a "volunteer." Maybe I should be honored that I have spent sufficient time to be designated as a volunteer. I guess I will now be an official volunteer. At the same time, it concerns me that I cannot have a relationship with people who I see as friends without some form of government regulation, even if it is a simple fingerprinting. What does this imply?

Does it imply that someone who wants to be the friend of an adult with
severe mental retardation is so unusual that they are suspect?
Must the lives of adults with severe mental retardation be so regulated
that friends from the community must be fingerprinted to be their friends?
What would I think as a resident of the group home if I understood that
fingerprinting was a requirement for long term friendship and interaction with
me?

These and other questions flooded my mind as I thought about the request.

As I said, I will happily be fingerprinted and will continue to visit my friends at the home. But I feel almost like I have been sullied or dirtied by the state. I am no longer just a friend who visits friends who live at a particular address. I will now be listed somewhere as a certified volunteer, who has been fingerprinted and that upsets me. I refuse to allow the process to change my relationship with my friends, but the state has changed me from a friend to a volunteer and I am not happy about that.

When a "volunteer" visits persons with disabilities, it implies a distance from the residents that is not felt and nor wanted. I understand the why of the process. But it is important to recognize that it takes the natural, people and their friends enjoying being together, and regulates it.

Without concentrated effort regulation cannot help but change relationships in some way. There is research that actually indicates that when the state gets involved in the natural, the natural either is changed or dies. The natural hardly ever remains the same.

McNair
(fcbu)

Monday, April 23, 2007

April 23, 2007

It has now been three years since the birth of this blog. I have made 256 entries (not as much as I would have thought in three years) and much has happened over the three years.
-We have seen the taking of the life of a person with a severe disability by starvation and dehydration in our own country. We have come to the point where we now call giving someone something to drink and something to eat "medical procedures." We have done that so that we can talk about removing medical procedures from a person. Our language is not to say we are going to "starve this person to death" we say we are "removing medical procedures." That is evil. In the United States of America, a defenseless person can be starved to death and people will argue, "that is what she would have wanted." I know of no one who wants to be starved to death. Perhaps they do not want to be kept alive artificially, but is giving someone food and drink keeping them alive artificially? If so, I and you are being kept alive artificially.
-We have seen a young woman have her growth and development stunted via surgery so that she will be easier to care for. If I were to do this to anyone other than a person with a severe cognitive disability, with mental retardation, I would find myself in jail. But because the person has a severe disability, I can change the rules and do unusual things to the person for my own convenience.
-The Supreme Court of the United States upholds the partial birth abortion ban. If you are unsure of whether or not this is a good thing, you should get a medical textbook and just read a description of the procedure. No politics. No agenda. In response to the stopping of this evil, we have politicians who group the upholding of this ban with the murder of 32 people at Virginia Tech.
-The Joni and Friends organization founded by Joni Eareckson-Tada build and now occupy an international center on disability as a launching point for ministry and programs of inclusion. This is another exciting next step.
-I think we are beginning to see the Christian church moving a bit as it awakens from its slumber over inclusion of persons with disabilities. I hear some pastors speaking about it, and little things are beginning to happen. I could be that three years from now, there is an even greater awareness and response. That is my prayer.

In my own little world...
-My own church will celebrate its second disability awareness Sunday! It should be awesome with participation of people with various disabilities, parents and leaders. My church has made great strides, largely having nothing to do with me, but with people within the church catching the vision and running with it. I has been an interesting and exciting time. But there is still more to do. As we met to plan the service, I said, "This is what this service will look like in 5 years and this is what it will look like in 10 years." Yes we have made great strides but there is so much more to do.
-The National Association of Christians in Special Education conference (NACSPED) was held at Azusa Pacific university and 120 people attended! We hope to have the conference at Azusa again next year, and perhaps in San Diego the following year. Little NACSPED is growing and one of its major goals is that special educators would go to their churches and get them to include people with disabilities. This is very encouraging.
-California Baptist University will be offering an MA in disability studies from a Christian perspective. This is very exciting and quite novel, I believe. We hope to make further announcements about collaborations we are working on in the near future, which will be an incredible blessing should the Lord allow the collaboration.
-Opportunities for writing about persons with disabilities and churches are increasing. This implies to me that there is a growing interest. Even five years ago, there were limited opportunities for such writing.

There is so much more to do, so much further to go, but we are seeing change and growth. God is waking a slumbering church. Be a part of the change.

McNair

Tuesday, April 17, 2007

A confession

I have a friend named Thom who is a person who has a cognitive disability. You might even say it is a severe disability. I have known Thom for probably 8 years. He comes to my church and I visit his group home. Our interactions have largely revolved around him saying things like,
"I got paid this week. A hundred dollars!"
or
"You know that man on the radio? He sings good!"
or
"I was good this week, will you give me a hundred dollars?" (he means one dollar)

These phrases are repeated over and over and over. My interactions with him over the past years have revolved around him approaching me and repeating one of the above statements. I would respond, hopefully, in a friendly affirming manner, but no doubt distracted manner.

But a couple of weeks ago, I had him visit the campus at Cal Baptist with me. He had my undivided attention for several hours. The result was that I realized how I had never given this friend of mine sufficient time to express himself to me because he never had my undivided attention. I was impressed once again by this last evening when I visited him at his group home. We shared a bag of jelly belly jellybeans and discussed everything from changes in his room, to his friends at work, to clothing he liked to wear, to baseball, to the jellybean flavors we were sampling together. I left the group home in repentence over the fact that I had never given this person whom I referred to as my friend, the time I would have given other friends of mine. I am now committed to working on our friendship, by being the friend to him that he was trying to be to me. His repetitive statements were efforts for me to see him as a person, as a person who wanted to be my friend. However, with his limited intellect he could do little more than repeat phrases that he probably had learned would get a response from me. I enjoyed his statements about his paycheck or the music he listened to, and I often gave him a dollar.

A student of mine shared with me something I had shared with her and my class on many occasions. That is, that the more time you spend with people with mental retardation, the more "normal" they seem to you. The fact of the matter is that they ARE normal, just different than most everyone else who are all the same. It is true that I at times enjoy my friends with mental retardation more than my friends without. It is true that I am growing more impatient with people without disabilities as I grow in friendship with people with cognitive disabilities (probably not a good thing, but reality nonetheless). It is true that Thom seems more "normal" to me because I have been taking the time to talk with him and be with him and really get to know him. Untill I did that, he was always a little crazy. Now I recognize that I am too busy, he is not crazy.

Another friend of mine wondered about when we could get together. I responded I would love to (I really would) but at this particular moment in my life, I am very busy. His response, probably out of frustration with me and others like me was "Busy, busy, busy. Everybody is too busy." He cut me to the quick. I communicate to him how important I think he is by the amount of time I spend with him. It is almost like he is telling me, "I am a person worth getting to know, worth being your friend, worth your time. You are missing out on my friendship."

It is true that I am.

I have danced with the idea of buying a different home with many rooms so that people would be in more of a community together. But I have got to understand that I cannot do it all as much as I might want to. That is why there is a church. In the same manner that my church cannot meet the needs of all the people with disabilities in my region of the country, I cannot meet the needs for friendship of all the people in my community. The church needs to step up and do the simple thing of taking the time to make friends.

May God help us to do so.

McNair
(fcbu)

Tuesday, April 10, 2007

The servant and devaluing roles

I was thinking again about the training I received in social role valorization (see March 21, 2007 entry). As Christians we are called to be the servant of all. The servant role is, in our society, a devalued role. There is value in being served, not in serving. Serving implies that someone else is "better than me" where being served implies that I am "better than someone else." At least that is what I think our society might say. Politicians like to refer to themselves as public servants, but I think most would agree that is more rhetoric than truth.

Jesus, however, saw things differently. In John 13, he was interested in teaching a lesson to his followers when he washed their feet. "You do not realize now what I am doing, but later you will understand."
Peter understood the ramification of Jesus taking on a devalued role (at least he thought he did) and would have no part of it.
Jesus responded, "Unless I wash you, you have not part with me."

It is amazing, but Jesus forever changed the meaning of washing someone's feet (no doubt, a commmon although devalued role in his time, as once again evidenced by Peter's statement). I suppose in non-Christian societies, it would still be considered demeaning. In Christian societies, it has ever since been associated with servanthood and being like Jesus. The devalued role has now become associated with something beautiful, and it is an example. Jesus even labels is as such "Now that I, your Lord and Teacher, have washed your feet, you also should wash one another's feet. I have set you an example that you should do as I have done for you...Now that you know these things, you will be blessed if you do them."

In our society, serving persons with severe disabilities might be considered a devalued role. Teachers of students with severe disabilities will have the experience of being told by their own families, "Why would you waste your time with those kids?" For that matter why would anyone "waste their time with such people?" If the church would embrace persons with severe disabilities (I mean SEVERE disabilities) we would change the meaning of such service. We would bring it honor in the same way that Jesus did via his example of service. We would be in the honorable position of setting an example such that others should do as we have done for others. So we would make the role valued by our desire to do it.

Jesus' washing of the disciples' feet also brought honor to them. Peter recognized that Jesus should not be washing his feet. However, by Jesus washing their feet, he not only taught a lesson to them about servanthood, he brought honor to them. Imagine being one of the 12 people who ever lived who had the Lord of the universe humble himself to wash your feet. Pretty elite group. The point, however, is that I bring honor to people when I serve them. Those I serve may be just as lacking in understanding as Peter was, but I understand what I am doing.
I understand that I am setting an example.
I understand that I am elevating that form of service.
I understand that I am demonstrating the worth of those I serve via my service.
I understand who I am in relation to the person whom I am serving. They are not above or below me, they are my equal.
If I allow myself to be inconvenienced, or better yet, choose to inconvenience myself in the name of service to another who society has devalued, I contribute to the valuing of that person. Particularly if I am a person of stature in the community.

It is amazing to think about the depth of meaning than can come from a valued person washing the feet of others. It is amazing to think of the depth of meaning I have the potential to bring to a situation when I as a person who has value in society's eyes, serve those who society has devalued. Perhaps I will bring value to them. Cool.

McNair
(fcbu)

Monday, April 09, 2007

Helping those who can't repay you

Luke 14:14 "Although they cannot repay you, you will be repaid at the
resurrection of the righteous."

When I am speaking to groups, I often ask the question, "When was the last time you did something for someone who was unable to pay you back?" I also always give the caviat that I am not talking about your elderly parents (whom you are paying back) or your infant children (who will hopefully pay you back). I am talking about strangers or strangers who have become friends over time. People with whom you would typically think you have no particular reason to develop a relationship...no reason other than Jesus' words in Luke 14 and elsewhere that your life as a person will be evaluated at leasted partially on what you did for those people. Well I guess I do have a reason if I am going to be evaluted on that basis. In fact that is probably the major basis for the evaluation of my deeds in life. In Matthew 24 the difference between people will be as obvious as the difference between sheep and goats, at least obvious to the Lord. If you look at the response of the sheep (the good guys, although I personally do have an affection for real goats, not the scriptural illustrative type) they appear to be somewhat oblivious to the fact that the people to whom they were showing kindness, ostensibly without repayment, were in fact Jesus in many different forms.

It is interesting that earlier in the Luke 14 passage, it even cautions you that the people you help might repay you or may be able to repay you and so you will be repaid. It is almost as if you should avoid helping those who can repay you (not really, but there is a priority on the nonrepayers). Wow, so we as Christians should be seeking those people out. I should be thinking, "Sweet! I got to help someone who has little ability to help me back!" It sure gives you a different perspective on helping.

I was talking one of the pastors at my church the other day, a really great guy. I think in the course of our discussion we both concluded that within the group of people with whom he works, it is not necessarily the superstars that he has helped who are the "jewels in his crown" so to speak. They were probably in pretty good shape anyway, on the fast track to successful lives. But rather it is the autistic man or the cognitively disabled woman that he has helped who are his glory, his claim to fame. He can proudly state, "I helped a man with mental retardation be a loved and respected member of a group of Christian peers. I helped an autistic woman feel like she had a place where people wanted to be with her, where she was accepted."

But I guess in the cosmic, kinda spiritual world of things, those people give us the greatest of all gifts. They allow us to please our Lord through our actions. But hear me clearly. The opportunity for service to another human being is what I am talking about. The Christian life is not about earning credits toward my salvation (which I already have through faith in Christ). It is not about pity or charity or whatever. It is about being like God in showing mercy and facilitating justice in the lives of the powerless. The ultimate result of being with devalued people is that I see myself for who I am. In a Micah 6:8 way, I learn to walk humbly with God and with my fellow human beings.

McNair

Sunday, April 08, 2007

Disability studies at CBU

California Baptist University in Riverside, California, has just had an MA degree approved by the university curriculum commitee. This is the first step forward in this direction and we are very excited. By its very nature, disability studies is an interdisciplinary/multidisciplinary program of study. This is reflected in the faculty who have participated in the development of the program, coming from political science, education, nursing, theology, law, and ministry areas. We hope to expand the various disciplines which will participate in the program as it develops. The MA degree will offer three foci for study: leadership, policy development, and ministry. Courses range from Intro to disability studies, to Biblical anthro with an emphasis on disability, to organizational leadership, to sociology of disability, to research methods. Within the concentrations courses are offered regarding Christian thinkers on disability, disability ministry, developing the disabled leader, policy development and social role valorization.

Pending accreditation approval, our hope is that the MA will begin to be offered in the Fall of 2008. There will also be a distance education option for people who are not in the immediate area of Southern California. Our goal is to have couses offered online as soon as possible in order for people across the country and around the world to participate. For more specific information, please contact me, Dr. Jeff McNair at jmcnair@calbaptist.edu

Please be watching for further announcements about this degree program as they occur at this blog. This degree program is particularly innovative as we will be one of the few if any Christian universities offering study in this area, and we will be unapologetically Christian in our approach. Exciting times are ahead. Please pray for God's guidance as we develop in this exciting area of study.

McNair

Wednesday, March 28, 2007

What is the standard?

I had an interesting interaction with a friend the other day. He is a man who uses a wheelchair who attends an adult Bible class I teach at my church. He was sharing some challenges he faces in his life with relationships with various people. In response I would tell him what I understood to Bible to prescribe. So if he is interacting with a person who is impatient, the Bible would say that as Christians we should be patient...we are the Christians in the situation. If another person who is a Christian acts in a nonChristian manner, we are responsible to still act as a Christians. Independent of what the other person does in a relationship, we are still responsible to act as Christians.
A couple of days later, we were having lunch when he asked, "Why is it always the diabled person who has to act like a Christian and not the nondisabled person?"
I thought it was an interesting question on a variety of levels. My immediate response was, "I am not speaking to you as a disabled person or as a disabled Christian, I am speaking to you as a Christian." I think that was enlightening to him (although disheartening to me in that I must project to him that I see him as a disabled person). But it is true that we expect more and better from people with disabilities I think. It is true in special education. When we write objectives we either pull criterion percentages out of the air, or we have too high or too low expectations for a person we are hoping to educate. I have always tried to tell the teachers I am working with to look at the environment that the person you are working with is going into. If it is time on task at work, how much time does the average worker spend on task. If it is accuracy, how accurate is the average worker at the task. There is also discrimination which must be taken into account, however.
There is the research study about the man with mental retardation who was about to loose his job. People from the agency facilitating employment asked why. The response was that he repeated topics at break too much (which is an indication of the discrimination of the workplace, not the skill deficits of the man). Anyway, the researchers determined how often the man's coworkers repeated topics, and worked with the man till he did not repeat topics any more than any of the coworkers. When he was repeating topics at the same level as coworkers, they asked the boss how he was doing. To their dismay, the boss said there had not been any significant change. You see it was a problem with the enviornment. The environment needed to be changed.
I think that is what my friend was getting at. It didn't matter how good he would get at being a Christian, he would always be expected to be better, and would be vilified for the smallest of infractions because of the difference he brought to any interaction, because he uses a wheelchair. So there is a sensitivity there that relates to the previous post about wounding. A sensitive individual who has acquired a disability will become even more sensitive because of the other wounds which are piled on the functional impairment. I compare how I would respond to a situation with how my friend who uses a wheelchair responds, and I say to him, "Lighten up!" A much better response would be for me to address the environment to soften it, to help it become more sensitive to devalued, wounded people. It would also be good to encourage the person experiencing the disability.
I think my words to my friend were encouraging to him. He was quiet for a minute after I told him how I see him, what I was thinking as I counseled him. But sentiments like, "I am not speaking to you as a disabled person or as a disabled Christian, I am speaking to you as a Christian" need to be repeated sufficiently often that both the person with the disability and I myself will come to believe and practice that sentiment.

McNair

Wednesday, March 21, 2007

Social Role valorization and wounding

At the end of February, I had the opportunity to attend a training in social role valorization offered by Training Institute for Human Serve Planning, Leadership & Change Agentry in Syracuse NY. For those of you familiar with the work of Dr. Wolf Wolfensberger, his thinking was first published in Normalization in the early 1970's. The book was foundational to much of what has happened in changing the manner in which persons with disabilities are treated. In the early 1980's, Dr. Wolfensberger built on his normalizaton ideas and developed what he calls social role valorization. As a result of his work, there are many articles and book which have been written as well as an International conference held every four years. I would highly recommend the training.

Social role valorization begins by recognizing that people are devalued and wounded. In fact, the SRV training lists 18 wounds.

Wound 1: Bodily impairment
Wound 2: Functional impairment
Wound 3: Relegation to low social status/deviancy
Wound 4: Attitude of rejection-disproportionately/relentlesly the more rejecting party has higher values and is more likely to...
1. Repress awareness out of consciousness "their faith tells them they shouldn't do it"
2. Harm is inflicted on the rejected party in unconscious, indirect and subtle forms
3. Negative behaviors are explained as having positive motives.
Wound 5: Cast into one or more historic deviancy roles...social status causes devalued roles or vice versa (we have touched on these roles in this weblog in the past)
So people can be considered...

1. Non human
a. pre human
b. no longer human
c. sub human (animal, vegetative/vegetable, insensate object
d. other "alien" non human but not sub human
2. A menace/object of dread
3. Waste material, garbage, discard, offal, excrement
4. Trivium
a. not to be taken seriously
b. object of ridicule
c. joculaor, jestor, clown, etc.
5. An object of pity - accompanied by desire to bestow happiness on people and associated with the victim role. Person is "suffering"
6. A charity recipient
a. ambiguous/borderline role of object of charity "nobility" in helping
b. burden of dutiful caring "cold charity" entitled to only the minimum/should be grateful takers-not givers
7. A child
a. eternally
b. once again
8. As a sick/diseased organism (leads to handicap) "medicalization of everyday life", "psychiatrization of deviance"
9. In death-related roles: dying, already dead, as good as dead, should be dead,
should never have lived



Wound 6: Symbilic stigmatizing, "marking", "deviancy imaging", "branding"
Wound 7: Being multiply jeopardized/scapegoated
Wound 8: Distanciation: usually via segregation and also congregation...major forms
Wound 9: Absence or loss of natural, freely given relationships & substitution with artificial/boughten ones
Wound 10: Loss of control, perhaps even autonomy & freedom
Wound 11: Discontinuity with the physical environment and objects "physical discontinuation"
Wound 12: social and relationshp discontinuity & even abandonement
Reasons for relationship discontinuity
Wound 13: Deindividualization, "mortification" reducing humaness
Wound 14: Involuntary material poverty, material/financial exploitation
-stripping what you have
-preventing people from acquiring things
Wound 15: Impoverishment of experience especially that of the typical valued world
Wound 16: Exclusion from knowledge and participation in higher-order value systems (eg. religion) that give meaning and direction to life and provide community
-lack moral guidance
-solace and comfort
-participation in community therefore reduced participation in society
Wound 17: Having one's life "wasted"...mindsets contributing to life wasting
Wound 18: Being the object of brutalization, killing thoughts & deathmaking

It was particularly interesting to see how these wounds tend to accumulate in the life of a person who simply has a bodily or functional impairment of some type. But the SRV folks would say that anyone who is devalued will experience these wounds to a greater or lesser degree whether your devaluing is due to impairment, or race or ethnicity, or religion or whatever.

The church needs to take the role of first of all recognizing the wounds of devalued people and then doing what it can to address the wounds in some way. I found it interesting that wound 16 is "Exclusion from knowledge and participation in higher-order value systems (eg. religion) that give meaning and direction to life and provide community." That is, Wolfensberger has identified the exclusion from religion or religious groups as a wound that is inflicted on persons who are devalued. The training is very careful to present the material in a very empirical fashion. That is, they do their best to just present the facts. They simply say, "If you do this, this will be the result." So if you exclude people with disabilities from participation in religious activities, in the church, you wound them.

It was also noted in the training that people who are already wounded will often feel wounds, be they slight more than those of us who are not devalued. I have noticed this fact with friends of mine whom I just suspected were very sensitive people. Yes they were sensitive, but I am coming to believe their sensitivity is due to their pain from being the brunt of so many of the wounds described above.

The church can do much to attenuate the wounding of persons who are devalued, particularly persons with disablities, particularly by just preventing wound #16. Just as there is a kind of a cascade effect with many of the wounds, there might be a positive cascade effect as we attempt to alleviate the wounds. Facilitating church participation might be a significant start in healing persons with impairments, and lead to a diminishing or total healing of the many wounds.

McNair

Thursday, March 15, 2007

NACSPED 2007

Last weekend was the third annual conference of the National Association of Christians in Special Education or NACSPED. The conference was held at Azusa Pacific University, and they could not have been better hosts. The conference met in the beautiful Wilden Center, with the keynotes being presented by Dr. Rick Eigenbrood of Seattle Pacific University, and Mr. Steve Bundy, Director of the International on Disability for the Joni and Friends organization. The confernce theme was "Looking beyond disability," the implication being to see the person and not just the disability the person is experiencing. We had a total of 35 breakout sessions which were very well received by the 120 attendees. I was also proud in that at least 4 of our presenters were persons with disabilities. All in all it was a great day.

If you would like to join NACSPED, visit our website above, and come join us at our next conference to be held again at Azusa Pacific University, March 8, 2008 (we have developed a pattern of holding our conferences for 2 years in the same place before moving on).

NACSPED's mission is to ...
...facilitate the integration and participation of people with disabilities into the Christian community.We accomplish this change by:
-challenging Special Education professionals to exemplify faith through vocation
-providing professional development opportunities based on best practices.
-challenging Christian Special Education professionals to use their experience and training in the church.
-advocating for access to a Christian school education, for students with disabilities

We are also endeavoring to begin a movement of lay professionals to work to change their own churches, and make them more open to people with disabilities.

McNair
(fcbu)

Monday, March 12, 2007

Traditions of the church

Mark 7 is the passage where the famous verse in Isaiah is quoted by Jesus. He says,
These people honor me with their lips but their hearts are far from me.
They worship me in vain; their teachings are but rules taught by men
(NIV)
That section has always grabbed me as I wondered how I am guilty of that indictment, and also about how the church is guilty of that indictment. However, as I read on in the passage, there are several other comments by Jesus that really grabbed me. He is talking about the practice of "corban" but I think the passages still apply. Think about these sections as they may relate to the church's ignoring of persons with disabilities, the exclusion of people with disabilities, the traditionally often heard perspective that people with disabilities are not a priority for ministry. In verse 8

You have let go of the commands of God and are holding on to the traditions of
men


And then in verse 13
Thus you nullify the word of God by your tradition, that you have handed
down. And you do many things like that.
Jesus confronted the theological experts over their tradition of corban. He says "you have left the commands of God and are holding onto the traditions of men." The Jews has fallen into generations of missing the point and doing the wrong thing. Sound familiar? What is the result? "...you nullify the word of God by your tradition that you have handed down."

The church has left the commands of God and are holding on to the traditions of men in regards to people with disabilities. In fact in some ways, the traditions of men have changed and the church remains entrenched in a past form of the traditions of men. And what is the result? We are nullifying the word of God. No wonder that when a friend from the East coast was asked to receive counseling from pastors at a particular church, he responded "They do nothing for people with disabilities. Why should I receive counseling from them?" It would be as if someone had recommended in Jesus' time that someone go to the Pharisees to receive counseling in the ppractice of corban. The leaders presented themselves as respresenting God, however, as Jesus says, "you have let go of the commands of God...you nullify the word of God by your tradition." We as the church, nullify the word of God through our discriminatory traditions. We nullify the word of God through our prioritizing traditions. We nullify the word of God by our distancing of persons with disabilities in our traditions. We nullify the word of God by making church membership only accessible to those who can meet criteria based upon intellect. I wonder how people ever evidenced a faith in Christ prior to our times of saying the right phrases. All people had to say to Jesus was I believe and he accepted them. Today you have to behave a certain way, have certain social skills, memorize certain statements, assent to certain theoligical positions, and so on and so on. Now understand, I am not saying we just become a place where people believe in anything. At the same time, however, if our traditions are contrary to the word of God, and are actually nullifying the word of God, we have got to scrap our traditions.

Our traditions are exclusionary, and discriminatory, and intollerant of people with individual differences. It makes for an interesting Bible lesson when you are teaching people who don't have the greatest of social skills or don't quite understand how the traditional dynamics of a class should be acted out. But it also is very refreshing to be in a place where you comments are valued, whether they be about the impact of the Bible verse you are teaching, or to ask you for a dollar, or to discuss hot dogs and pizza.

It is time, in my humble opinion, that we step back and examine our traditions within the church. Tradition is not always the best reason for doing something. Tradition may be the absolute wrong reason for doing something, particularly if it nullifies the word of God.

McNair

Thursday, March 08, 2007

40 years but no membership

I was having a conversation with a friend the other day who related an interesting yet sad story. Apparently, she had an uncle who was a pastor, who had a son with down's syndrome. Anyway, the man with down's syndrome was a regular attender of his father's church for nearly 40 years. My friend related how he loved the church and loved God. The man literally would sleep on his hymn book every night. The sad part of the story was that the man was never offered membership in the church. My friend's assumption was that he wasn't offered membership because he was unable to memorize the church's creed, or relate particular faith statements in a manner sufficient to justify his actual membership.

What does a person need to do to express faith in a way that will lead to acceptance in the Christian church? Is faith only expressed through achieving some level of cognitive knowledge? Or can I love God and love my church so much that I literally sleep on my hymnal, possibly as an act of worship?

Obviously we don't give away the farm to anyone who believes anything, but we can also be exclusive in the most negative of ways. I suspect that the man, now a resident of heaven, didn't have the same criteria applied to him there. So he could be a member of God's family in heaven, but not a member of his local church.

McNair
(fcbu)