Leadership in ministry to people with cognitive disabilities

Who should be in leadership of Sunday School classes or groups for individuals with developmental disabilities? Typically it is people without disabilities although there may be a few leaders among those with disabilities in the group. Perhaps someone in your group witha cognitive disability immediately comes to mind. Perhaps we have people on the leadership team, some with specific roles. Others participate in leadership meetings because their input is valued, but one could ask why they are participants any more than anyone else. I think we need to be sure that leaders are in leadership positions. I am also confident that we could hurt feelings if someone was not invited to be involved in leadership because we felt they were not leaders. For example, there are those who would feel that they should be at any and every meeting and that her comments are essential to the functioning of the group. Others, might feel they are just missing out on a good time. But if the meetings are for purposes of discussing the future of the group, truly leadership meetings and not just social outings, there will be exclusion.


Because some of our group at my church have cognitive disabilities, and I am in a position of leadership in that group, I do not have a problem excluding them from the leadership meetings, as their disability on some level limits their contribution there. That is a judgment on their leadership skills, and their cognitive abilities which would imply that they are not gifted for participation in leadership, or teaching, for example (Ephesians 4:11). Obviously, I do not say there was no place for those people, only that their options could be limited by their disabilities and that would be a determination made by people with and without disabilities. I for one, have never been asked to sing before the church, or to have involvement in financial matters of the church. I have no problem with someone telling me that I am not gifted for those activities of the church because it is true, I am not. I also do not feel the need to have people with cognitive disabilities present in leadership meetings simply for reasons of political correctness. There are those with cognitive disabilities that I love dearly, and that I enjoy long conversations with, however, they will not be holding a position of leadership in our group. People with cognitive disabilities have very much to offer the church, but because of their cognitive or other disabilities aspects of their service may be limited.

Another basic aspect of the disabled/nondisabled dynamic is that people with cognitive disabilities cannot help but look to people without cognitive disabilities for leadership. Every cognitively disabled member of the group at my church looks to a non-cognitively disabled person for leadership in areas such as finances, travel, work, relationships, spiritual issues, etc. I have no problem with that as well. That is our responsibility as those without cognitive disabilities toward our brothers and sisters in Christ who experience cognitive disabilities. It is, however, a fine line to try to walk.

In our group, we have in the past and will do a better job in the future, communicated that all of those without cognitive disabilities are in leadership, if only informally. We need to note that, support that and praise that. That aspect has been one of the greatest points of growth in our group, for example, over the past year. I want people to be considered leaders in the class because of the positive impact their informal leadership has on members of the group. Others have a very quiet role in the group, but are leaders nonetheless through the way they come alongside of many people to talk and encourage them, love and support them. Those without disabilities are often totally invested in the group, and I think would do just about anything we could ask for the group. In that way they are an important part of the leadership. We, as those without cognitive disabilities, are responsible to help those who are cognitively disabled. Those without, or with less severe disabilities enjoy the group for themselves, but they also see it as a ministry role in a much different way than those with more severe disabilities typically see their involvement. I want to encourage the ministry view without disparaging the attendance view. I mean, I participate in groups where I am largely the recipient of ministry and that is fine. The key is that all should have the opportunity to be on both sides of the ministry equation (givers and recipients) although leadership in ministry might not be available to all.

McNair

Sin and social skills

So, a person with a cognitive or emotional or mental disability approaches you. He stands too close to your face. He asks you questions that you think are inappropriate. He touches you too much. He doesn't get your hint that you are feeling uncomfortable. He doesn't understand your language indicating that you want to end the conversation. He will not let the conversation end. Finally you break away. When you get with a friend, you comment, "That guy is weird. He's a mess. He doesn't get it at all, he was like standing too close and touching me and couldn't take a hint."

The question is...who just committed the sin?

He doesn't get it, you do.
He is kinda flailing around in attempting to be loving and friendly. You aren't nor do you want to be loving or friendly.
He will talk about you as his friend. You talk about him as weird and how he doesn't get it.
He will look forward to a chance to talk with you again. You will avoid him in the future.
He will give you all the time he has. You will give time only out of some feeling of guilt.

So who is committing the sin?

It is amazing what we, what I will do or think about a person just because their social skills are not all they should be. The person is not being evil, the person is not doing wrong, the person just doesn't understand many of what are truly the subtleties of social skills. My response is to reject him and 90% of my friends and 90% of the church would probably agree with my rejection of him. We as the Church of the Lord Jesus Christ, condone, understand, accept, advocate, discuss, follow through on rejection of people with various disabilities because of their social skills.

May God forgive us.

Yet as I approach the Lord, of course my behavior is obviously perfect and my social skills are flawless. I have nothing to hide, and to the Lord, interacting with me is no doubt "a day at the beach!" How fortunate for him that he is able to be in my presence (being the Lord, and being omnipresent, he kinda doesn't have a choice but to be in my presence). I am confident that the three persons of the trinity do not huddle together and say to each other, "McNair is weird." Surely they talk about how fortunate they are to have McNair on their side. But you know, in reality God's interactions with me, and my prayers to Him are "a day at the beach" because the Lord loves me. He loves me not because I am "a day at the beach" but because out of his love he has chosen to make interactions with me "a day at the beach." He has chosen to make me feel like I am "a day at the beach! " In spite of all my problems, my sins, my poor social skills, my pride, the crap that is in me and circles me like flies because of the choices I have made, HE LOVES ME! You see that is the example he provides. He shows me, ME, as the example of loving someone who is difficult to love, and then He loves me.

Do you think he cares about the social skills of the person who bothers you? Please! No, he treats him like he is "a day at the beach" just as much as he does to me.

So do you get it? Social skills deficits are not sin. If I reject another on the basis of social skills, that is sin and I am the sinner. We, I, need to learn about love. True love is not easy. It is messy and inconvenient. It makes you feel uncomfortable. It makes demands on you. I pray that when I am put to the test, when God asks me to show real love to another human being, I will not be worrying about that person's social skills. I hope my concern will be whether I am reflecting the kind of Love that God shows to me. I pray that I will be worried about the sin I am tempted to commit by rejecting another person who God truly loves.

McNair

People with down's syndrome and Arthur Miller

A friend of mine sent me a fascinating link to an article in the Vanity Fair magazine. It is about the famous playwright, Arthur Miller (Death of a Salesman, The Crucible) and his inability to accept, come to grips with, the birth of a son named Daniel who had down's syndrome. This was apparently a particular surprise to many because of Miller's voice of morality. As Vanity Fair states,

The Denver Post called him "the moralist of the past American century," and The
New York Times extolled his "fierce belief in man's responsibility to his fellow
man—and [in] the self-destruction that followed on his betrayal of that
responsibility."

Yet, he struggled with the acceptance of his son.

The article is excellent reading. It is fair to Miller, I felt, yet still wonders at the decisions he made about his son and the relationship he had with his son. Clearly we are looking at the situation through 2007 eyes which are very different from those of the 60's and 70's. We must hedge in casting judgement at Miller's decisions, at least some of them, which reflected the recommendations of professionals at the time. Yet as the article tells, Daniel's mother, was qouted as saying about her visits to Southbury Training School,

Inge said, "'You know, I go in there and it's like a Hieronymus Bosch painting.'
That was the image she gave."

This is a good description of the institutions at the time.

God bless the older couple who took Daniel under their arms and loved and supported him. Apparently he now has a wing built onto their home where he lives.

The article ends with the following

Some wonder why Arthur Miller, with all his wealth, waited until death to share
it with his son. Had he done so sooner, Daniel could have afforded private care
and a good education. But those who know Daniel say that this is not how he
would feel. "He doesn't have a bitter bone in his body," says Bowen. The
important part of the story, she says, is that Danny transcended his father's
failures: "He's made a life for himself; he is deeply valued and very, very
loved. What a loss for Arthur Miller that he couldn't see how extraordinary his
son is." It was a loss that Arthur Miller may have understood better than he let
on. "A character," he wrote in Timebends, "is defined by the kinds of challenges
he cannot walk away from. And by those he has walked away from that cause him
remorse." (emphasis added)

Daniel, who "suffers" from down's syndrome as the story relates, "doesn't have a bitter bone in his body...he is deeply valued and very, very loved." How very sad for Arthur Miller. The lost relationship, the communication of no value to Daniel. God bless Daniel for his heart of forgiveness, and apparently irrepressible love for his father. As the article relates, who knows what plays were not written by a man the article states could be the greatest American playwright of the last 100 years. What great good he might have done in his own life, the life of his son and the life of his family. The article also gave me a new appreciation of Daniel Day-Lewis (I hated him in Gangs of New York, or I should say his excellent acting made me hate him!), who married into the Miller family and as the article relates is the "most compassionate about Daniel. He always visited him."

The Arthur Miller family is a famous family in America, but they are just another family in Daniel (their son's) mind. A family who he loves although he lives with a couple who loved him for who he was. A family like many families whose patriarch feared down's syndrome, probably would have aborted the child had the option been provided to the father. A family probably coming to grips with their legacy, informed, yet misinformed.

Why is it that we look back on situations such as the one with Daniel Miller, the son of Arthur Miller we look back with regret for what might have been. We judge Arthur Miller for not being a father to his son because his son had down's syndrome. We praise the family who came alongside of Daniel and took him in. But I suspect the Vanity Fairs of the world will also support abortion of persons like Daniel. They will blindly talk about choice, or those who "suffer" with down's syndrome, not knowing about what they speak. People who know other people who have down's syndrome tend to like them, tend to think they are nice people, tend to think they are loving people, tend to think they are friendly people. But in the future we may never know this because of our efforts to wipe out people with down's syndrome.

The article ends once again with the statement, "A character," he (Arthur Miller) wrote in Timebends, "is defined by the kinds of challenges he cannot walk away from. And by those he has walked away from that cause him remorse." Will the Christian Church walk away from the challenge of down's syndrome, the challenge of disability or with integrity will we say that we cannot walk away? If Arthur Miller committed a "crime" in his relationship with his son, it was a crime of reflecting society. Perhaps he went where the rest of society is going now. What is Vanity Fair's response for his taking this path? It is probably our response. It is lamentation, shaking our heads in sadness, and perhaps judgement. I doubt Mr. Miller had any notion that his relationship with his son would be the subject of a Vanity Fair article, or discussed by an obscure Christian blogger.

May Arthur Miller's name forever be linked with the term down's syndrome and the name Daniel Miller.

It seems that Daniel Miller was born and Arthur Miller saw down's syndrome not Daniel Miller. This should be a warning to me, a warning to all of us, lest we make the same error.

In our world today, Daniel Miller is anticipated. Daniel Miller is conceived, Eighty percent of Daniel Millers will be aborted. Down's syndrome was the challenge Arthur Miller walked away from, hopefully with remorse. Our society is running headlong toward the elimination of people with down's syndrome.

Lamentation, sadness and judgement will be the response of those in the future to what we are doing to people with down's syndrome now.

McNair

Wyatt, Doc and difficult friendships

I like to wake up on Saturday mornings and watch old cowboy movies. This past week Wyatt Earp was on. There are two scenes that struck me. One, is when Wyatt and Doc Holiday meet for the first time. Doc asks Wyatt, "Do you believe in friendship?" He responds, "Yes" and their friendship begins. The movie portrays scenes from that friendship over the years. At one point, Doc and his girlfriend Big Nose, get in one of their typical drunken fights where they try to kill each other. Wyatt breaks the fight up and and attempts to sober Doc up. As he begins to regain his senses, Doc says, "Its not easy to be my friend, but I will be there for you when you need me" or something to that effect.

Do you have friends like that? Friends it is not easy to be friends with? Some of my cognitively disabled friends are like that (I have a greater tendency to not work on relationships with nondisabled people if they are hard to be friends with for some reason). Sometimes helping my friends with mental retardation, being friends with them is "messy." They have problems that I can't solve, and they impolitely do not keep their problems to themselves. They tell me their problems, make demands on me, and expect me to help them or solve their problems. Even keeping in contact with them is difficult because they don't follow the social etiquette I am used to. They will call me at 11:30 at night or 6:30 in the morning. They will call me 7 times a day or everyday of the week. My response has been to tell them "Please don't call me after 10 or before 7 unless it is an emergency. I will also tell them, "Please just call me once a week just to talk." I have gotten to the point that I will tell them, "You have already called me once this week. Unless this is an emergency, I will talk to you later." I may even have to hang up after ensuring there isn't an emergency. It might seem unkind, and perhaps it is, but it is what I have come to. But I like the fact that others in my church are facing the same challenges in their friendships with the people with cognitive disabilities who attend our church. These individuals are now on their radar screen. They are also someone else who can be called once a week just to talk for a few minutes.

Some of the messiness of the friendship comes from the social skill differences of my friends with cognitive disabilities. Some of the messiness comes from differences in my friends' life experiences that I may not be not used to. My friends with disabilities have to deal with...

-Access (busses they reserve to take them places), and
-conservators (who may or may not be very interested in them, but
nontheless have control over their lives),
-unscrupulous people who sell them things (cell phones can be the biggest
pain)
-being alone except for people who are paid to be with them
-dealing with human services and human service rules (in other words, the
government)
-a lack of friends
-too much time and too few things to do
-and so on

In attempting to be a friend to some people, I find myself in the position of negotiating, or being in the middle, or whatever. They are not friends who I can call to come over, or meet for a ball game, who then go home and solve their own problems. They can be high maintenance.

The whole social skills thing is another aspect of the difficulty of some friendships. Some of my friends I am sure impact the potential of friendships with others. People I love have told me that friends of mine are "wierd." Those who are not afraid to be politically incorrect and tell me what they really think will sometimes say that, which makes me think that others with whom I am not as close probably think that as well, but just don't say it to me.

So as Christians, what do we do about this? Are we called to befriend those who are more difficult to befriend than the average person? Are friendships about us only? Do we befriend others to benefit them? Is friendship something that is easy? I must admit that I have at times asked myself Doc Holiday's question. I have wondered if I believe in friendship, or just friendship that is easy for me.



McNair

Website changes

Hello,
Well as you can see, I have been busily making changes to the website. I think this will in some ways be easier to negotiate than the old format. Hopefully you will feel the same way.

One cool change is that I am going to gradually upload a variety of video. Currently there is one about the ministry to persons with disabilities at Trinity Church in Redlands where I attend. This was just a kind of awareness video that was shown to the congregation. Enjoy. Others to come!
McNair

Description of a nightmare

A friend of mine is a man who attends my church. He is a big guy, about 6'1" and wide as well. He likes to work out. He has been attending the church for about 7 years. Yesterday at church he pulled me aside (true story).

"I had this terrible dream last night...it was a nightmare!" he said.
"What happened?" I asked.
"Well I dreamed that nobody in the church loved me anymore."
"Well, you know that isn't true" I quickly replied.
"Oh sure, I know that. Everybody loves me down here. It was
just a dream. It was just a nightmare."

I have had that nightmare, most often when I am awake, and it doesn't have to do with me personally per se. I am glad that for my friend it is only a dream and when he awakes he knows that it was just a dream. For too many people, however, the dream is that they have a place in church and are loved. The nightmare is when they are awake, when the reality of their situation where they are isolated and in need of love and companionship visits them again.

McNair

Call for papers: Inclusive Christian Religious Education

The following is provided FYI. the Journal of Religion, Disability and Health is putting together a special issue on Inclusive Christian Religious Education.

Call for Papers:
Thematic Double Issue Inclusive Christian Religious Education Among the many important aspects of congregational life are the opportunities designed to foster people’s spiritual growth; learn the teachings, practices, and expectations of the Christian faith; deepen their relationships with others traveling along the same journey of faith, and grow in their relationship with God. Indeed, most congregations strive to provide an array of quality religious education offerings to their members, including Sunday school classes, programs for children and youth, men’s and women’s groups, preparation classes (e.g., confirmation, membership), and small group activities. Yet, most congregations struggle with exactly what it looks like to meaningfully welcome and weave children and adults with developmental disabilities into these core aspects of congregational life. The largely cognitive orientation of most religious education activities can leave people with intellectual and other developmental disabilities participating only at the margins or excluded altogether. This special issue of the Journal of Religion, Disability, and Health will be devoted to the topic of religious education, exploring the myriad ways that congregations can thoughtfully support the full participation of children and adults with developmental disabilities (e.g., intellectual disabilities, autism, multiple disabilities) in the life of their faith community.
We are seeking to capture the innovative work being done in this area, to challenge congregations to see people with developmental and other disabilities as an integral part of their communities, and to articulate a vision of what their programs could and ought to be for all participants. To this end, we encourage submissions addressing, but not limited to, the following topics:
• New and innovative models for inclusive religious education
• Program approaches focused on specific age groups: Early childhood and elementary programs Youth ministry and youth groups o Adult programs and small group activities
• Curricular and pedagogical approaches that promote learning, growth, and belonging for everyone
• Analysis of the fit in using traditional educational approaches to providing religious education involving persons with or without various disabilities
• Strategies for designing and implementing religious/educational support
• Expanding participation in ‘rites of passage’ and other preparation programs
• Supporting the participation of children and adults with challenging behaviors, emotional disabilities and/or mental illness
• Empirical studies exploring factors that support and/or hinder the meaningful participation of children and adults with developmental disabilities in religious education programs
• Perspectives of people with developmental disabilities and/or their families on the importance and impact of inclusive religious education in their lives
• Effective partnerships among congregation leaders, lay volunteers, and the disability service system
• Approaches for preparing teachers and other lay volunteers for inclusive religious education
• Contributions and barriers of church “structures” to the inclusion of individuals with disabilities in religious education
• Exploration of the relationship between education and “faith development,” particularly for individuals who may not evidence “spiritual growth” in the same ways as other congregational members
• Examination and evaluation of the goals of religious education for persons with and without disabilities
Our desire is that this issue will reflect the range of pioneering ideas, creative approaches, and progressive responses taking place across diverse traditions within the Christian faith.

This special issue of the Journal of Religion, Disability, and Health will be co-edited by Dr. Jeff McNair (California Baptist University) and Dr. Erik Carter (University of Wisconsin-Madison). If you are interested in submitting to this special issue, please contact the co-editors to discuss your proposed contribution. We encourage you to contact us with specific questions about this special issue. The deadline for submission is November 30, 2007. Please consult the author instructions located at the website of the Journal of Religion, Disability, and Heath (see http://www.haworthpress.com/).

Guest Editors Jeff McNair, Ph.D. Dr. Bonnie G. Metcalf School of Education California Baptist University 8432 Magnolia Avenue Riverside, CA 92504 (951) 343-4489 telephone jmcnair@calbaptist.edu
Erik W. Carter, Ph.D. Rehabilitation Psychology and Special Education University of Wisconsin-Madison 432 N. Murray Street Madison, WI 53706 (608) 263-5750 telephone ewcarter@wisc.edu

Less honorable need abundant honor

...And those members of the body which we think are less honorable, on those we
bestow abundant honor. (1 Corinthians 12: 23)

So, a man with mental retardation lives for 60 years. He gets up in the morning, goes to a job, comes home, and spends time with friends or family, and goes to bed. This scenario is somehow different from people without mental retardation who get up, perhaps go to a better job by comparison (more responsibility, more money, etc.) come home to family or friends and go to bed. How is the life of the person who is a waitress or a mechanic or a teacher or a professor or a doctor different? Is the difference based upon how much money they make or their contribution to others? Distinctions are artificial.

So we react when "stay at home mothers" are regarded as less than working mothers. Then we decry the effect on children of poor parenting. If some salary figure is our criteria for life well lived, stay at home mothers are criticized. If well adjusted children are our criteria, then working mothers are criticized. The critieria we set will determine whether we are successful in the evaluation. But I must look critically at those inside and outside of the group I am evaluating if I am being honest. For example, the need to be served might be a criteria to elevate someone to inclusion (special honor) not only a reason to exclude.

Self-sufficiency, the Bible would imply, causes people to not trust in God, to think they don't need God. Yet how do we convince self-sufficient people that they need God? Perhaps we put them in situations where their presumed self-sufficiency is inadequate. Put them in situations where they are once again forced to trust in God and not in their wealth (for example). People in need, people who need to be served have the potential on many levels to teach us about faith. Those we think are less honorable might actually be worthy of honor for a variety of reasons.

1) through their own faith
2)through the way they cause others to try to reconcile disability and faith theologically and philosophically
3) through the service they demand (causing one to decide whether or not he
will serve God)
4) what are the essential elements of being human or being made in the Image of God
5) what is is that makes a life valuable or well lived
6) why should I or my life be considered more valuable than that of a person with a disability
7) God's soverignity
8) support within/among the Body of Christ

The ability to teach lessons about faith might require special honor.

So the giving of honor might be less an artifact of our simply being obedient (although that is sufficient reason) but might actually be due to people if we use the correct criteria to do the evaluation. In thinking about having honor or giving honor, we might define honor in the following ways (the first five definitions from Webster's Third New International Dictionary, 1966):

1. good name or public esteem
- so people may have no good name or receive no public esteem, but we would give it to them
- we give them a good name through our social capital
- we recognize their contributions such that they receive public esteem

2. a special prerogative
- so we give them special prerogatives in overlooking social skill differences in the same manner we would overlook the social errors of our loved ones
- we facilitate the opportunity to provide honor by giving the opportunities to make decisions about their own lives, rather than approaching with a we know best attitude

3. person of superior standing or importance
- we begin by recognizing as a person as having equal standing and importance
- recognizing strengths we may begin to see superior standing
- through relationships we may begin to see importance

4. one that is of intrinsic value
-we honor by fighting for the disabled person's intrinsic value, that is, value that is not determined by ability levels, etc.
-we honor by having a realistic picture of our own value, intrinsic or otherwise

5. an evidence or symbol of distinction
-we honor by giving the same symbols of distinction to those who are disabled that we would give to anyone
-we honor when relationships with persons with disabilities are no longer a symbol of distinction


Our society decides about what it will choose to honor and then honors it. We honor physical appearance and athletic or other abilities. The Bible calls upon us to think differently about what honor means. One distinction of being a Christian is that within the Body of Christ, we reject the worlds criteria for honor, and honor whom we choose to honor. Paul chides us to give special honor to those whom we would typically think are less honorable.

Perhaps there are things worthy of honor if we would see people through God's eyes, using God's evaluative criteria. Perhaps we are to treat those we think are less honorable with abundant or special honor because in the deliverance of that honor we will begin to see the honor we should have been giving but missed in the first place.

McNair

Disabled man / Christian man

As I have mentioned before, I have a friend, a man who uses a wheelchair who challenges me to think about many issues related to disability and Christianity. As he works through various issues in his personal life, he asks me what I might suggest, how I might counsel him regarding the various issues he is grappling with. On several occasions, he has asked me, "Why is it that the disabled person has to change and not the nondisabled person?" My response typically is "I am not speaking to you as a disabled man, I am speaking to you as a Christian man." I hope that is encouraging to him.

But I have been wondering lately, how does being a disabled man impact being a Christian man? Does being a disabled man change one's expectations regarding what that person might be able to be as a Christian man? Clearly if a person has a cognitive disability, has mental retardation, there will be some limits in terms of knowledge, or specific ability levels. However, I have known people with mental retardation who althought limited in some areas, were very gifted in areas of faith, forgiveness, loyalty, and love among other things. So on the one hand, to limit a person with a disability is wrong. I limit others at my peril, in terms of not being Christlike in my interactions with them. Because there is more to disability than just the outward signs of physical or mental disabilities, I must see those people as I see myself. I too have strengths and weaknesses, some related to differences in my abilities, some related to differences in my abilities, some related to my sinful condition. But overall, we are the same.

Now clearly, I cannot expect self-control from a person who is mentally ill, or emotionally disturbed. They may have the desire to be self controlled, but they lack the ability to be so. It is no different in a person with mental retardation wanting to read the Bible, but lacking the ability to learn to read. But I wonder whether there are other aspects of being a disabled man which may limit a person's particular abilities. Jean Vanier speaks of the wounds of persons with disabilities. Wounds which Wolf Wolfensberger expands upon, breaking them out into specific types of wounds. See the March 21, 2007 posting for more specifics on wounds. If I were to have a stab wound in the arm, you would hardly expect me to throw a baseball, or use a hammer. I might desire to do so, but I am unable because my wound has incapacitated me.

So thinking about the particular wounds faced by a person with a particular disability, I might find that that person would face limits due to his wounding. Wolfensberger talks about diminishing wounds, attempting to limit them to the degree possible. His goal generally is largely to simply limit the wounds a person has to face, out of caring, out of concern out of love. I, however, would also argue that as we work to diminish the wounds of our disabled brothers and sisters we empower them to grow in various aspects of their Christian faith. We enable them to forgive, we enable them to love, we enable them to do a myriad of things they would desire to do in order to be Christlike, but are unable to do because of the wounding they face.

In summary, we must work to diminish, to attend to, to love those who are wounded. In doing so, we literally heal the wounds that prohibit them from being all they can be as Christians.

McNair

Joni and Friends "Through the Roof" Summit

The Joni and friends organization are planning their series of 2007 (follow the link)
Joni and Friends "Through the Roof" Summit meetings to be held in Chicago in September and in Pasadena in October. These are great events that you should attend if you have any interest in disability ministry, or a Christian perspective on disability.

My wife Kathi and I will be speakers at the event in Pasadena along with many other excellent and informative sessions.

It is also obviously a great pleasure to hear Joni Eareckson-Tada speak. Last year she was absolutely amazing and powerful. I have had the priveledge to hear her on several occasions and of course on the radio. But she gave one of the most convicting and powerful presentations of issues related to culture, church and disability I think I have ever heard. Do not miss the opportunity to hear her and meet her.

McNair

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

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

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

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

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

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

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)

"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

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)

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)

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

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

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

"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)

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

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

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

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

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)