Joni and Friends "Through the roof" conference 2006

This past weekend was the Joni and Friends "Through the roof" conference. There were 2 excellent keynote presentations as well as 3 breakout sessions across the day
Saturday. But for me, the highlight was Joni's presentation on Friday night. I have had the opportunity to hear her on several occasions and she is always great. However, this past Friday night, she was simply amazing. She riveted me as she spoke about ministry to persons with disabilities as being or becoming a "life and death" matter. She cited efforts at prenatal diagnosis and abortion, infanticide and euthanasia. She was very powerful as she informed her position with life experiences from her own life as well as those to whom she has ministered over the years. Anyway, I am hoping that either a recording or the actual text of the presentation will be made available. I actually felt as if the presentation had significance historically, particularily if it is made available to a larger audience.

It was reported that there were over 300 attendees from 21 states and even a few foriegn countries. It could actually be that the Church is waking up to the needs of persons with disabilities although there is still a very long way to go. I always feel encouraged after attending the conference both in that there are co-workers in attempting to open the church, and that people are experiencing the same frustration that I sometimes experience.

If you are a regular reader of this blog, you should consider attending the Through the Roof conference when it comes to your area of the world. Check out the Joni and Friends organization website http://www.joniandfriends.org/ to find more information or to contact them.

McNair

"It was easy to see us as people that Jesus loved then and loves now"

I have a good friend named Toby (visit his weblog). He is a man who has significant physical disabilities as a result of being attacked several years ago. He sends emails to a group of people several times a week which are very encouraging, and reflect his thinking about God, Christianity, disability, among other issues. Yesterday he sent out the following email, which I have reproduced here with his permission.

Monday, October 9, 2006 Addition
I think my desire for friends and people that I can identify with has come to a wonderful end. Yesterday, with my Sunday school class of handicapped adults, we got together and went to Huntington Beach and spent the WHOLE DAY at the beach. None of us is perfect, in the normal human sense, but each of us was good company.

I simply cannot understand what people are saying, so I often sit quietly for hours at a time but that’s OK. I don’t even notice when a long period goes by.

There were a number of other adults there who could do other things like get my food for me, get my pills, take me to the restroom, barbecue hot dogs, make smores, put sunblock on me, etc.. I watched them and none of them seemed to think less of us. So it was easy to see us as people that Jesus loved then and loves now.

So you bet your life, I felt at HOME.

A Servant for Christ,
Toby

This is the face the church needs to have towards all people, including persons with disabilities. Toby states, "It was easy to see us as people that Jesus loved then and loves now." One might conclude it was easy for him to see, but hopefully it was also easy for those around he and his friends at the beach to see as well. Matthew 9:2 says, "And seeing their faith..." he then goes heal the paralytic on the mat.

Is it easy to see that Jesus loved all people then and loves all people now at your church, at my church? What would it take for that to characterize the captial C church?

McNair

Disability studies from a Christian perspective

There is 20 year old academic discipline (it has been developing over the past 20 years) called Disability Studies. For those who might not be familiar with disability studies, the following is Society for Disability Studies mission statement:

The Society for Disability Studies (SDS) is an international non-profit organization that promotes the exploration of disability through research, artistic production, and teaching. Disability Studies encourages perspectives that place disability in social, cultural, and political contexts. Through our work we seek to augment understanding of disability in all cultures and historical periods, to promote greater awareness of the experiences of disabled people, and to contribute to social change.

I am asking any readers of this blog to please share with me places and programs where disability studies is considered from a Christian perspective. I honestly believe that the Christian perspective has much to offer form a positive perspective on the understanding of disability. I am aware of websites like the following which list disability study programs across the country. However, I am particularly interested in programs from a Christian perspective.
http://isc.temple.edu/neighbor/ds/dsprograms.htm

Finally, it is sometimes a criticism of disability studies that it doesn't address or include people with cognitive disabilities/mental retardation. So I would also be interested in disability studies from that perspective.

Thanks for your help

McNair

More from the Aberdeen conference

As I related, I recently attended a conference at the University of Aberdeen. There were two featured presenters, Dr. Jean Vanier and Dr. Stanley Hauerwas. Both of these men are professional heroes of mine. I could not believe that I would have the opportunity to meet them both at the same conference, particularly as the second day of the conference was with an intimate group of about 30 people with Vanier and Hauerwas.

Much of the focus of the conference was on the work of Vanier, particularly through the L'Arche communities. The second day of the conference was specifically dedicated to what the L'Arche communities have to say to the church. Dr. Hauerwas gave a presentation that day, in which he lauded Vanier's work, and the example of L'Arche as in many ways prophetic, as prophesy to the church. Allusions were made to L'Arche as in some ways being similar to a kind of monastic community. A question from the group of 30 particularly made that connection, which Dr. Hauerwas affirmed had occurred to him.

I then asked a question which I will have difficulty repeating here exactly, although Dr. Hauerwas' response will be much easier to reproduce. I asked something to the effect, "Although I have tremendous respect for Dr. Vanier and the work of the L'Arche communities around the world, don't you think the manner in which people in these communities interact with persons with disabilities should be like the "normal Christian life", the way in which we all should interact with such people? I mean, to set this community up as approximating a monastic model, only implies that it is not for everyone, as I for one will not be joining a monastery. Most people will not. Shouldn't this be the way we all should be interacting with persons with disabilities, within the churhc?" I actually thought I was asking a kind of a "soft ball" question, but his response shocked me. He said something to the effect, "I don't know, you have to ask Dr. Vanier." I can only assume I was misunderstood. I hope I was misunderstood. Otherwise, the love and compassion evidenced by people at L'Arche towards persons with disabilities, causes a world renown theologian and philosopher to reply basically that he doesn't know if that is the way Christians, or the church are to act towards people with disabilities.

A light came on for me.

This was a perfect example of what is wrong with the Church today. A brilliant man, one of the few theologians who has taken on disability and has written pretty powerfully about it, didn't know whether we as Christians, within the church, should be showing the love and caring demonstrated in L'Arche communities towards persons with disabilities. Maybe he was thinking of people living together in the manner of L'Arche, I don't know. But his answer was almost breath taking for me in illustrating how disconnected the church is about people with disability and who they are. Perhaps he needs to know more people with disabilities, perhaps he is afraid of people with disabilities. Clearly he holds those like Dr. Vanier who have done incredible work in this area in high esteem, but that can be a big part of the problem.

I have shared with the classes I teach that I have been told many times by a variety of people how wonderful I am because I work with persons with severe disabilities. I am a bit sick of that praise, however. I am at the point where I am going to respond, "If it is so wonderful, why don't you do it too!" Don't praise me and dismiss yourself. I wish you wouldn't praise me at all. Just you do what you can, so that all of us loving and supporting people with disabilities will become the normal Christian life.

And theologians will not be stymied by the question of whether I should love my disabled neighbor.

McNair

The ALL principle

It is funny how our human vanity impacts our theology. I look in the mirror and have little difficulty understanding that I (in my vanity) am "fearfully and wonderfully made" (Psalm 139:14). Or I look in the same mirror and with little difficulty affirm that I (in my vanity) am created in the "image of God" (Genesis 1:27). Or I look in the mirror, and think about the delight that God must have experienced when he, "knit me together in my mother's womb" (Psalm 139:13). I mean, c'mon, look at me, isn't it obvious?

But then I look at someone born with a severe physical or cognitive disability and all of a sudden I am unsure about the whole fearfully and wonderfully made stuff, which never occurred to me when I was looking at myself. I wonder about the knitting together as clearly God would not knit like that (thinking about people born with disabilities). I may think like that, but God has something to say to me as well. "Don't think more highly of yourself than you ought to think" (Rom. 12:3).

I wonder about the impact of vanity on theology, in terms of 1)thinking I am a day at the beach and 2)in thinking that people with disabilities are a NOT a day at the beach. There are so many scriptural principles which include the word "all" but I have missed what I call the "ALL PRINCIPLE" as I am typically focussed on persons without disabilities, people like me.

Scripture doesn't say, using the examples above,

"some of us are fearfully and wonderfully made"
"some of us are created in the image of God"
"some of us God knit together in our mother's womb"

Scripture also doesn't say,

"some of us have sinned and fallen short of the Glory of God"
"some of us are loved by God"
"we are to love some of the people around us"

All the teachings, all the promises, all of the scriptures, the reasons for Jesus' sacrifice, the whole thing is for all of us. Actually, it is for all of us or it is for none of us.

I honestly think that the church does not believe in the ALL PRINCIPLE. It takes most of what is in me to believe in the ALL PRINCIPLE. I have been socialized by society and by the Christian church to believe otherwise. It takes courage, because disability has been constructed by society and the Church to be something other than it is. I recognize that I am stepping out in faith when I believe in the ALL PRINCIPLE. I will meet with opposition whenever and wherever I stand up for the ALL PRINCIPLE.

It is crazy but it is true.

McNair

Men and women

This past week I was speaking to one of the classes I teach about the way people with disabilities are percieved, often negatively, by those around them. This is in spite of the fact that they think they are doing fine. Their only experience is their life experience and as far as they are concerned they are ok. I thinking through that, I came up with a metaphor, which might be helpful to some people in terms of understanding the point I was trying to make.

Now, I am a man. I was born a boy, and have grown up male. All I know is what it is like to be a male. Of course I love people of the opposite gender. I first loved my mother, then loved my wife and for the last 19 years have loved my daughter. I love those women, but I have no idea of what it is like to be a woman. I have no idea of what it is like to be three of the closest people to me in my life. I have some ideas of what it might be like to have me as a son, or as a husband or as a father, but I really don't know. Women tell me what they are thinking sometimes, but I really don't know what it is like to be one. Obviously, they don't know what it is like to be a man either. My mother, wife and daughter only know my thoughts to the extent to which I share them with them, and I have been told by them at times that I don't understand (ostensibly their women's perspective). I am sure that that is the truth.

However, imagine that I decided that because women are not men, their lives are in some way diminished, disabled. They think they are just fine as women, however, I think I know better. I therefore impose my beliefs on them. I think I know what it would be like to be a woman, and if I were a woman, I would be upset that I am not a man. I convince them that they have a poor quality of life, or get them to believe that their physical womanness is an impairment of which they should be ashamed. Perhaps I conclude that their differentness from me is not a difference, it is an impairment to which discrimination is attached (some of you may argue that this actually occurs, and I would be hard pressed to disagree). But to continue to press this metaphor, instead of me as a man seeing women as part of the natural diversity of humanity, as my equal yet in some ways different from me, imagine that I see them as "other," as very different from me. Not only that, imagine that I think they are dissatisfied with their lives as females and that they would choose death over being a woman, so deep is their wish they could be a male like me.

Can you catch where I am going with this metaphor? I think there is a lot overlap with the way in which people with impairments are percieved, particularly those with disabilities that they are born with. I only know what it is like to have my level of cognitive ability. So I assume those with a lower cognitive ability level would wish to be me. I only know what it is like to have my other characteristics, good vision, healthy, etc. And because I am satisfied with my life having my characteristics, I assume that those who don't have my characteristics are dissatisfied with their lives. That because they are not me, that they are in some way suffering, or depressed, or something else negative in character.

You might say that this sounds foolish, however, this perception drives the movement to prenatally diagnose and abort babies with disabilities. Take down syndrome for instance. We are told by the medical profession that obviously, people with down syndrome suffer, are dissatisfied with their lives because they don't have normal intelligence, or other characteristics that we (people without down syndrome) have. At least that is what people think who are behind the prenatal diagnosis and abortion movement. They take the lives of infants with down syndrome out of "compassion" for what the persons with disabilities are not.

But just as certainly as I don't know what it is like to be a woman and a woman doesn't know what it is like to be a man, I dont' know what it is like to be a person born with down syndrome. All I do know about that life experience is what they tell me about that experience. And what do they tell me? They tell me that they are happy with their lives. Many would say that they don't think they even have a disability (something they perceive negatively, probably through their socialization). Yet I believe my daughter when she says she is happy (even though I don't know what it is like to be a woman) but I don't believe the person with down syndrome when he or she tells me she is happy because I say that I would not want to live with that disability if I had it.

In the same way that I don't know what it is like to be a woman, I don't know what it is like to be a person with a disability. In the same way that a woman does not know what is like to be a man, a woman without a disability does not know what it is like to be a person with a disability.

May God forgive our society for projecting its negative perceptions on people with disabilities and then killing them on the basis of our negative perceptions through abortion, infanticide and other approaches. May God stop us as well.

McNair

The gift of time

As I mentioned, I just got back from a wonderful conference at the University of Aberdeen in Scotland, hosted by Dr. John Swinton, which featured Dr. Jean Vanier and Dr. Stanley Hauerwas.

One of the ideas which came through at the conference was the notion of being a "friend of time" or giving "the gift of time" to persons with cognitive disabilities in particular, but to persons with disabilities in general. I believe it was Vanier who spoke about how those who are well connected in society have little time while those who are not well connected have a great deal of time available to them. The question is how to bring these two groups together. One way is for the well connected to slow down. To become a friend of time rather than a slave to time. It requires serious life changes on their part to make this happen.

Coincidentally, as Kathi and I were hurrying from flight to flight on the way home, at one point I exited the plane behind a man who appeared to either have hemiplegia or who had had a stroke. His slow movement caused the line to slow down quite a bit. It struck me even in that situation, that I needed only to slow down a bit to his walking pace to still get where I wanted to go. I was literally physically slowed down, and for a moment experienced "exiting from an airplane" from his perspective in terms of the time it took.

The conference conversation also talked about taking the time to just have fun together with others. Vanier spoke of how most of the time he spends with his friends with cognitive disabilities is spent "fooling around" with them. I was encouraged by this from such a respected man as that is how I spend much of the time when I am with my friends with cognitive disabilities. He said there is also lots of celebrating of little things in life, taking time to celebrate those things.

For about 5 months of this year, I was spending one evening a week (for about an hour or so) at a group home on my way home from work. We would talk, eat some ice cream, have a catch with a baseball, or they would encourage me as I try to learn to play the guitar. They are always there, ostensibly waiting for me as I hurry from place to place. Being with them was a chance for me to slow down and try to be a friend of time with them. I the connected one, being with those who are less or not connected.

Luke 12:48 says, "every one to whom much is given, of him much will be required..." Much will be required of the well placed in society, not the least of which is their time. I am well placed, but even the well placed know that they have time if they make it. Please don't tell me you are too busy, because I am too busy too. But I have the ability, partly because I am well placed, to become a friend of time, and give of my time to those who would enjoy my company. It is a choice I have to make. It begins with me being realistic with myself, and calling myself into account for the choices I make.

McNair (fcbu)

The rectitude of doctrine vs. the rectitide of love

I had the pleasure of attending a conference last week at the University of Aberdeen in Scotland. The conference was hosted by Dr. John Swinton, and featured Dr. Stanley Hauerwas, a theologian/philosopher and Dr. Jean Vanier, writer and founder of the L'Arche communities.

I asked Dr. Vanier why he thought it was that the church has not been as responsive to persons with disabilities as L'Arche as endeavored to model. His response was that we as a church are focussed on "the rectitude of doctrine" when we should be focussed on "the rectitude of love." The rectitude of doctrine vs. the rectitude of love is something worth thinking about. No one is implying that doctrine is unimportant. Rather, doctrine can be dry and harsh. Love by comparison can be soft and accepting. In the case of persons with disabilities, we need love and doctrine to be as correct as possible.

May God open our eyes to the rectitude of love.
McNair

Assisting to gain independence

I have a friend experiencing a severe physical disability. He became disabled later in his life. He was already established with a job, family, etc. Most of those aspects of his life have been lost or significantly changed as a result of his disability. However, there are are positives and negatives in those changes he himself has reported to me.

As he has recovered somewhat from the original insult which caused his disabling condition, it has been interesting to see the interaction between him and his family. They have done just about everything for him for several years, and have mostly done those things joyfully. Interesting, however, that as he begins to get some of his abilities back (taking care of his own toileting needs, making various decisions about his life, etc.) there seems to be an almost resentment and resistance on the part of his family towards those changes. They are used to him being dependent upon them and as he gains in independence, they kind of resent it. I would have thought they might welcome the independence as it would free them up somewhat, and they could celebrate the growth he is showing.

It reminded me of the parent who struggles with their teen who chafes against the restrictions of the household. I have never really had experience in this area with my own grown up children. We have always gotten along famously. I have been blessed in that I can't even remember a real argument with either of them. But is it still somewhat disorienting for them to become as independent as they are. As a parent you live your life caring for the little ones you love so very dearly, and because you have done a good job in their upbringing, they become self-confident and independent, heading off to live their lives. But because independence is all so new to you as a parent(even though you see it coming) it does kind of disorient you.

It is my prayer that my friend's family will see my friend's growth as an occasion of celebration and joy, and will increasingly turn over the decisions of his life to him. I hope this not only for my friend, but also for the family.

McNair

The "embarrassment" of disability

In the book Defiant birth: Women who resist medical eugenics the author Melinda Tankard Reist takes on the notion of prenatal diagnosis leading to abortion through the stories of women who having received the diagnosis that the child they were carrying was determined to be disabled, but chose to have the child anyway. Of course she relates stories of those who were misdiagnosed, however, the thrust of the story is the experience of women who gave birth to children who were born with various disabilities. These disabilities include anencephaly (a disability which typically takes the life of the newborn within hours or days) and of course down syndrome. There are many amazing lessons to be gained. One, for instance relates to carrying a baby with anencephaly to term. Overwhelmingly, doctors would advocate for abortion of such children as they will die soon after birth anyway. Tankard Reist, however, says that if you knew your child would die in an hour or a day, would you choose to kill your child or would you enjoy the hour or day you had remaining with your child? Mothers spoke of their child living his entire life in their arms, of celebrating the 1 day birthday, or the trip home from the hospital. The also spoke of the impact for good the birth of the child had on their lives.

One story really touch me. Written by Elizabeth Schiltz about her experiences carrying, having prenatally diagnosed, giving birth and raising a child with down syndrome. She relates that when she took her baby out into the community there were actual comments made like "Why didn't you have prenatal diagnosis?" She said that many of the stares she received seemed to give the same message. There is a kind of embarrassment with goes with choosing to have a child with a disability, or simply having a child with a disability under any circumstances. Lets think this embarrassment through a bit.

Why would someone be embarrassed about anything in their lives? Perhaps I do something foolish and I don't want to be laughed at. Perhaps I do something wrong and I don't want to be found out. Other reasons could be thought of as well. The bottom line is that I am concerned about what those around me think about me, or my behavior, or my decisions. Teenagers in particular struggle with worries about the perceptions of their peers. As a parent I have often made a special effort with my kids to deliberately be goofy, or silly, or dress oddly in public so that when people look at me strange or if my children say, "People are looking at you" I can respond, "I could care less what people think of me. Am I doing anything wrong? (with my goofiness or whatever). If not I am not going to let them determine what I will do." They are on to me now, and know better, often saying themselves, "I don't care what people think about me." That is good, I think as it develops self confidence, but there is something even better that could happen. What if people would come up to me and say, "I like the way that you express your individuality." That would be an even more powerful witness to being a free spirit.

But that is what Christians, of all people, need to be doing. When we see a child with a disability, we should treat it like any other child we would meet. We should delight in her, play with him, tease with her. If I approach a family in my church or community who has just given birth to a child with down syndrome and say, "I am so sorry, I will pray for you." We don't bless that family, we embarass them when there is nothing to be embarrassed about. They have received the gift of a child that God has given them, often in the face of incredible pressure from the medical profession to abort the child, and our response is to embarass them for their heroic choice. Tankard Reist cites a statistic that 86% of babies prenatally diagnosed as having down syndrome are aborted by their parents. Do you, does the church add to the certainty that those children will be aborted by our embarrassment of parents, embarrassment of people with disability? As stated elsewhere in this blog, are we complicit in the abortion of babies with disabilities through our lack of caring or priority giving to the lives of persons with disabilties?

Those who would reject parents of persons with disabilities for choosing life or would reject people with disabilities themselves should be embarrassed, should be ashamed of themselves, not the other way around. We need to "not be conformed to the patterns of this world but be transformed by the renewing of our minds" ala Romans 12. What have you done in your life to contribute to 14% of families, moms and dads who chose to give life to a child with down syndrome?

McNair

Reflecting their surroundings

I was in a classroom this morning visiting a student teacher of 10 year old children with moderate to severe disabilities. Some of the children had autism, others cognitive disabilities. As I sat in the back of the room, there was suddenly a lot of screaming from the next room. Ultimately a student was placed in the little office which connected the two rooms. For the next 10 minutes you would hear a calm woman's voice followed with screams of "Shut up b**ch." Over and over again.

In another setting of children with severe disabilities of kindergarten age, there was a boy who didn't communicate other than to say "Hi" on occasion. However, as he moved through his day, he constantly repeated, "F***ing sh*t." That was his complete language repertiore. Knowing the number of times something has to be repeated in order to find its way into such a student's language repertiore, I couldn't help but wonder about the environment these students were living in.

Maybe people around them thought them cute in their nonsensical swearing. However, that kind of language is not thought of as funny in many, maybe most social settings. People who talk that way will never be able to have any job in which they work with customers. You need only tell your boss "Shut up b**ch" once before you will be fired (in case you didn't know).

We, however, in the church need have patience and acceptance for people who use such language while also trying to teach those individuals that such language is not appropriate. However, we must take the position that the swearing cannot be a reason for exclusion from a church setting.

I used to work with kids with serious emotional disturbance. I have been called many memorable things as has my mother, my wife, and anyone else they thought might cause me to get angry. In every case, I have had to repeat to myself, "This is the disability talking. This is the disability talking." Had I rejected them, I would have supported what they were trying to prove to me. That is, basically that they are worthless and that I would ultimately reject them. It is tough when you faced with such a barrage, however, in these cases it truly is the disability speaking.

In the case of the severely disabled children above, it isn't really the disability talking as in the second case, he was doing little more than making sounds that he had heard and had discovered would get a reaction positively or negatively from his environment. In the first case, he learned that that is how you interact with your environment by examples that had been provided to him. His particular choice of language he probably also discovered got the maximum reaction from his environment.

Is the church prepared to include people such as these or are we only willing to take those who act in a particular socially circumscribed manner? If these types of children and adults are in the congregation, how do we prepare congregational members for the things they might say or do? I think it begins by having those people present to begin the conversation. I think people have not been forced to come to grips with their faith in terms of having demands made on them in areas of acceptance and understanding of others. The church environment has in many ways become too sterile.

I need to begin with acceptance and then move to change. I don't begin with change and then move to acceptance.

McNair
(fcbu)

200 Posts

Today's entry is the 200th post to this weblog. So what have I learned over the past 2+ years?

I have learned that thare are many people across the country who resonate with the various quotes from authors I have provided here.
I have learned that there are too many people who are frustrated with the relationship they and their family member with disability have with their church.
I have learned that there are churches who do not have disability minstry on their radar screen.
I have learned that there are churches who not only do not have disability minstry on their radar screen they refuse on many levels to add it to their radar screens.
I have learned that what is really needed is quite simple, largely being about relationships.
I have learned that I have a lot more to learn.

As I have been writing a book I am hoping to have published that will probably also have the title disabled Christianity, perhaps the greatest benefit to me in writing is that I am pulling together the various topics of the last 2 years. I ask for your prayers as I move forward on that project.

This summer I have been very busy with a variety of project, however, I hope to get back to more regular postings shortly.

Thank you for your readership!
McNair

Its about relationships

Kathi and I had a great time yesterday. We had lunch with one of the pastors and his wife from our church, and our PAID ministry support person and her husband. It was great time. The pastor, Kurt, asked me where I would like to see our church in 15 years. As I thought through that question, and listened to the discussion that ensued, I was once again impressed with the fact that what are needed are not programs but relationships. It is not about building programs that include people, it is breaking down the barriers that exclude people from existing programs. Ben (the husband of our ministry support person, Rachel) talked about how he wished that people with disabilities were just known by others in the church, to the point that needs would be met on a simple intepersonal level.

We all talked about the distancing that can come from programatic approaches to helping persons with disabilities. That whole question is something that I have thought about a great deal and I have come to the conclusion that we need both. We need to be people who introduce those with disabilities to those who haven't experienced them yet in order to break down the "otherness" feeling that many nondisabled persons have about those who are experiencing disability. That is all about relationships and experience and personal interactions. Those types of engagement will lead to experiential knowledge which will break down many of the barriers which have been constructed. Why do I not feel uncomfortable with people who act atypically? Probably more than any other reason is because I have been around many people over my lifetime who have been atypical actors. I have know people whose behaviors range from those with very minor social skill deficits where you just notice a very subtle difference, to those who smear feces or publicly masterbate, or violently punch themselves in the face. Through experience, I have learned to redirect them, or try to give them alternatives to their current behavior when asked to do so. But largely, I have learned to accept them. Sure, I get mad at people and enjoy the company of some over others. But the opportunities I have been provided through my experience have allowed me to see the person behind the atypical behaviors. By seeing the person, the otherness starts to fade. But these changes that have been wrought in my perspective came over time through personal interactions.

There is still a place for programs that focus on inclusiveness of persons with say, cognitive disabilities. Places where they can have the scriptures explained to them in a clear but not demeaning manner. Where they are treated as adults, but given information at a slower pace. But I think I would even sacrafice those types of settings (as useful as they are in building spiritual knowledge and understanding in persons with cognitive challenges) for simple ongoing interactions with other people. Many of the lessons we teach in our Light and Power class, for example, could be facilitated by friends explaining the sermon to friends. Additionally, as people experience more severe forms of mental retardation, their church involvement does not revolve around some sort of spiritual formation. It relates to them coming to a place where they are loved and accepted. Where they feel a part of something while they have a donut and coffee (see Fowler's "Stages of Faith").

So I think where I would like to see my church in say 15 years, is a place where there are many relationships between people independent of their differences. Where differences perhaps cause you to do a little planning (assisting a person who uses a wheelchair, for example) but doesn't in any way stifle relationships. Yes, there are structural changes which need to occur in the church, but rather than just prescribe structural changes from the outside, people will desire to see changes when they see their friend Sally excluded from opportunities for service or whatever within the church. Their righteous indignation would fuel the desire open things up. But as Kurt (the pastor at our lunch) said, it has to get into the DNA of the church. DNA is very difficult to change.

McNair

Religious liberty in group homes

I am in the process of researching issues related to the religious liberty of persons with cognitive disabilities who are living in group homes in the community. I would appreciate any input that those of you who visit this blog might be able to provide. Specifically, I am looking for
-literature/references
-other resources
-stories of your experiences

You can provide any input via this weblog, or you can email me at mail@jeffmcnair.com

Thank you for your assistance.
McNair

Choosing disability

I met a woman yesterday for whom I have a lot of respect. She is a friend of my Mother-in-law whom I met at a party. She related the following story.

She and her husband had two young boys, once 10 and one 12. She had had some experience volunteering to work with at risk children, but thought that she would like to do more. She decided to be a foster parent for a couple of the children. However, there wasn't a need at the particular time that she was interested for the type of children she had been working with. Undeterred, she decided to adopt two children with developmental disabilities. One had down syndrome, and the other some very rare syndrome that she related had hardly been described at the time. It ispowerful to note that she had never known a person with down syndrome before. The two girls lived with her family for about 11 years. Ultimately, one of the girl's father moved out of state, and the regulations stated that a family member needed to live in state for a child to remain in the foster care situation. The other girl moved out of the home to a group home. Apparently and sadly, one of the conditions of her foster care arrangement was that she could not contact them once they left her. It has been nearly 20 years now and she hasn't heard from either of them. She suspects one of the girls probably has died because she had severe medical problems at the time she was their parent.

Upon hearing her story, my only response was, "God bless you for taking those girls into your home!" She related that she had received tremendous benefits to her family as a result of having the girls. Effects, positive effects, on her and her husband as well as on her two boys were lifelong.

McNair

Bruce and Cam (aka Martha and Mary)

I had the privilege of presenting to a group of Christian medical students at a meeting on the University of Redlands (Ca) campus last night. What a great group of future doctors they were. Our program was comprised of myself talking about impairment vs. disability, Kathi (my wife) intereviewing 3 adult friends with cognitive disabilities, Alice a friend and medical student and her son Josh sharing about their experiences with the medical world and another friend and university colleague, Bruce sharing about his experience as a parent of a child with a disability.

I got a bit choked up at one point, when Joyce, one of my friends experiencing disability shouted to me, "Spit it out" which shook me right out of it! Kathi asked great questions and Alice provided wonderful pointers, mostly about treating people with even the most severe disabilities as people, with respect. This seems so obvious, however, if you have any experience with persons with severe cognitive disabilities, you know that it is not at all obvious.

In the midst of the evening, Bruce shared the story of how he was keeping an eye on his son, Cam a preteen with autism while he was doing yard work. As he was working, trying not to be distracted by his son, an older gentleman walked on the sidewalk past them. His son ran up and positioned himself in front of the older man and began a conversation. "What do you have in the McDonalds bag you are carrying" it started after name introductions. The man stood there and kindly interacted with the boy for several minutes. Finally the man said it was time for him to leave. As Bruce stood there, he kind of shook his head to himself, wishing that his son would leave the man alone as he got back to his pruning. The man began to walk away when his son called out to him again. "George!" he said. "Do you know Jesus as your savior?" the autistic boy called out. Bruce said he was moved and really convicted. He was the Martha to his son's Mary (to use the Biblical story). At that moment Bruce said that he learned a great deal about himself in relation to his son, and also about his son.

It was a wonderful evening. I was very impressed by the students and the program (put on by Campus Crusade).

(fcbu)
McNair

Biblical language

Dr. Stanley Hauerwas writes of how groups define themselves by their narrative. The Bible is obviously the narrative for Christians and in the Bible, one can hardly read the Gospels in particular without bumping into people with disabilities. In many occasions, Jesus heals them. Dr. Bob Pietsch has written how the Jewish leaders needed only have a man with a “withered hand” in a room of people to “trip up” Jesus. That is, they knew He would see the man and then that He would heal him. Jesus on another occasion sends out his disciples, and later the 70, with the power to heal people with all types of infirmities (Luke 9). When in prison, John is told that the proof that Jesus is the Messiah is that the sick and disabled are healed (Luke 7:23).

Jesus and other biblical writers change how we think about things. They redefine words as illustrated by the following.

Foolish – one who hears words but doesn’t put them into practice (Matthew 7:26)
Good – one who bears fruit (Matthew 7:17)
Servant – we are all to be servants of all (Mark 9:35)
Wisdom – the fear of the Lord (Psalm 111:10)
Strength – is Christ (1 Corinthians 1:30)
Poor – poor in the eyes of the world but rich in faith (James 5)
Humble – those who are lifted up (Luke 1:52)

We are also instructed to, give to the needy (Matthew 6:1-4), now worry about our lives (Matthew 6:25), and seek first the kingdom and righteousness (Matthew 6:33).

Each of the above establish criteria for followers that nearly all may participate in. These radical definitions provide access for the inclusion of nearly all people. In an effort to include all, Paul goes through a list of persons who would typically be excluded, ultimately going so far as to state that God chooses, “the things that are not” (1 Corinthians 1:26-31). Interestingly, this perspective and the above definitions benefit persons with disabilities.

In spite of this language, this narrative, such perspective changes are not reflected in many churches. These environments can have an effect positively or negatively on God’s ability to minister within their midst. For example, in Matthew 13:58, it states that Jesus was unable to do miracles among them due to their lack of faith. While on the contrary, when the paralytic is lowered through the roof for Jesus to heal in Luke 5:17, the Bible says that when Jesus saw “their” faith, including the faith of those who lowered the man, he replied “Friend, your sins are forgiven.”

McNair

Religious liberty

On the Fourth of July, it makes sense to talk about liberty. In this case religious liberty. Let me share a brief experience and then tell you what I have been doing to better understand the situation and its potential ramifications.

There were about 8 residents of two group homes for adults with cognitive disabities who were attending my church. Specifically there were 3 women and 5 men along with a group home worker who were attending. We were enjoying getting to know each other through the activities of the church on Sunday mornings. Somewhat suddenly, they stopped attending the church. After making several attempts to contact the group home which received no response, we finally got into contact with the woman who had been bringing the adults to church. She related that she had been fired for very non serious infractions (according to her telling) and that the folks were no longer permitted to go to church. We got the impression that they were no longer permitted to attend because of the nonreligious proclivities of the group home owner.

Since then, I have been in contact with a variety of people/agencies to get an understanding of the religious rights of persons with cognitive disabilities living in group homes. Several experts in religious/disability although helpful, didn't have a lot to offer in terms of resources. The Dept. of Justice wrote me a letter which implied that rights might be curtailed depending upon who funds the group home. A legal aid group indicated that parents or conservators might restrict the religious liberty of these adults. In California, religious liberty is guaranteed under Title 17 of the California code of regulations which states, (4) A right to religious freedom and practice, including the right to attend services or to refuse attendance, to participate in worship or not to participate in worship.
In speaking with a client advocacy group, I was informed that no one can refuse religious liberty whether conservator, parent, etc.

The critical factor then becomes access. How does one determine the choice of a cognitively disabled adult living in a group home? Group home providers may restrict access on the basis of their own attitudes toward religious activity. The rights of others living in the home might also come into play. I am confident that those who are funded by the state are very gun shy when it comes to anything related to church and state, and have perhaps overly restricted access in some cases. I continue to try to do research in this area.

There is case law related to group home owners attempting to proselytize those living in the homes which says that such pressure is inappropriate. I would suspect it is illegal to proselytize for or against religious faith. One must wonder, however, about the procedures necessary to provide choice to someone in this area.

As discussed elsewhere in this blog and on my website (see, A Discussion of Networks Supporting Adults with Disabilities in the Community on my website) I am confident that the local church is the answer to community integration of persons with cognitive disabilities and will one day prove to be so. However, an important step in the mean time is access to persons living in group homes, and assisting adults with cognitive disabilities to express choice in this area.

I would appreciate any insight, ideas, resouces readers of this blog may have come across relative to this issue. Please send them along to me at mail@jeffmcnair.com
Thanks,

McNair

Swearing at the people

About a year ago, I was just coming out of a Mexican restaurant with my family when I heard this guy standing by the restaurant's dumpster, swearing loudly at people passing by. His language was such that you could tell that he was someone with mental illness. I went over to him and asked him gently, "What's the matter?" Through a lot of jibberish sprinkled with references to me as "Officer" he related that he could really use a pack of cigarettes. I told him to wait there a minute as I went across the parking lot to a convenience store where I bought the cigarettes and came back to him with them. He was very grateful, saying over and over, "Thank you officer!" I left him by saying, "Please don't swear at the people. Please say after me, 'I won't swear at the people.'" After several more "Thank you officer" I left him sadly.

I have often thought about that interaction. The fact that he was standing by the dumpster like so much human garbage. That he called me "Officer" perhaps because most of the people he interacted with in the community were police officers responding to a complaint. The fact that he interacted with people by swearing at them, perhaps out of frustration with people. Interestingly, he placed himself where there would be people as he obviously wanted some human contact if only to be told to stop swearing or to get the cigarettes he ultimately got for me. What a difficult life he appeared to be living. And as I always ask myself in these types of situations, I wondered "Where is the church?"

Why did I not feel uncomfortable with the man when many others might? True I am a large man, but I think my lack of fear is more related to the fact that I have spoken to many people like that man before. I have experience with people like him. I definately did not get that experience at church which is a problem. I mean Jesus went out of his way to talk to people like that man (see the Gereseen demoniac story). But I don't see people like him at my church, or pretty much any church for that matter. From a strictly humanistic perspective, imagine the good it would do for a man like the one I met to find himself in a church where people loved him and talked to him and listened to him.

One of my favorite people in my life was my wife's grandfather, Russel Searer. He was a kind gentle man who loved God deeply,and had a great wit. Toward the end of his life, however, he developed alzheimer's disease. I think it would embarass his wife that I would sit and talk with him whenever we were together. He would repeat things over and over and over and over. He would talk about nonsensical things. I enjoyed being with him because I knew I was learning about people like him; I had a professional interest. But I also knew that I was in a very small way contributing to his self esteem, his feeling that someone loved and cared for him. That was very important to me. That is the kind of ministry that the church should be about. If I am present with people like Russel, I protect him from those who would do evil to him. By spending my "valuable time" I say that I think he has value to me and ultimately value as a human being. I choose to be with him. I want to be with him.

It seems the church doesn't want to be with people with mental illness unless a person's mental illness is under control to the point that it is hardly recognizable. It doesn't want to be with mentally retarded people, and I am not sure why. If we spent time with them, they wouldn't be the crazy person outside of Walgreens, they would be a person who has been rejected by society but who God says he loves as much as he loves you or me.

When will we as individuals and the church reflect this aspect of the character of God?

McNair

Disability awareness Sunday

This past Sunday, my church held what was called "Disability awareness Sunday" which largely highlighted two ministries of our church. The one is called the Light and Power Company, with is a group that includes adults with developmental disabilities, and the other is called King's Kids which helps to integrate children with various disabilities into the regular programs of the church.

The service started with worship/music. Four individuals with cognitive disabilities assisted in leading the singing. Our worship director had provided them with cds with the songs they would be singing, and they all apeared to have listened to them as they were singing along with the band and having a great time. Next up was a video I did with my video expert extrodinaire and son, Josh (http://punkvideoguys.org) which was interviews and some video of people just living their lives. I hope to have a link to the video from this website eventually. After the video was an interview with three people from our group. I always like th ask the question in front of a group, "Do you have a disability?" as the answers really open people's eyes. Typically the response is "I don't know." I then comment that people without disabilities often think that disability is the defining characteristice of a a person with disability's life when they may not even recognize that they have a disability.
After the interview, there was more singing and then a faith story shared by the parents of a great young guy who attends our church who also has cerebral palsy. They told of their life in Virginia at the birth of their son. Basically, they were pretty much rejected by their church and after much searching at the churches in the city where they lived in Virginia, they found that the churches were basically discriminatory against children with disabilities. Ultimately, through the wife's mother, they came to California, specifically because of our church and it's desire to include all the people in God's family. Our pastor then did a great job going through sections of Romans 15. It was interesting and he made some great connections with disability ministry.

The highlight for me, however, was the second service of the morning (we have 3 every Sunday morning). During the second service there must have been 35-40 people with mental retardation in attendance in an audience of perhaps 600. There was something about that gathering which gave you the feeling that that was the way church was supposed to be. Some folks were a little noisy, not bad, and perhaps there was a little more activity than usual, but the fact that so many were there was cool. There were actually about 10 people with severe mental retardation in attendance. I wondered to one of the pastors whether that had ever happened before at our church (I am sure it hadn't). It was great.

I also was aware of how the presence of all the folks with disabilities kinda softened people, from the pastors to those in the congregation. The pastor had several moments where he was overcome by emotion during the services. Congregational members responded to the the over the top desire to shake hands that some people evidence and were patient with noise and atypical church behavior. It was awesome. The church would be changed if that type of attencance occurred every week.

McNair

Jean Vanier quote

The following is from the RELIGION & ETHICS NEWSWEEKLY regarding an interview to be on a future PBS program about Jean Vanier. Pay particular attention to the quote at the end.

Jean Vanier is the founder of L'Arche, an international organization that creates communities for people with developmental disabilities -- people who were in institutions, on the streets, or in families who couldn't care for them or didn't want them. The son of a French-Canadian diplomat, Vanier served in the British Royal Navy during World War II, then he taught philosophy in France.

While never marrying, he considered the priesthood. But in 1964, he found his calling, opening the first L'Arche home in a small village south of Paris. Judy Valente visits L'Arche in Chicago and talks with Vanier about how the members of this establishment have transformed Vanier by allowing him into their world and watching their self-esteem grow as they give back
the love that they have received.

Vanier says, "My life is to live with them -- to be with those who are fragile, vulnerable and weak. I'm not sure that we can really understand the message of Jesus if we haven't listened to the weak...we can love people who have been pushed aside, humiliated, seen as having no value. And then we see that they are changed. And at the same time, we discover that we too are broken, that we have our handicaps. And our handicaps are around about elitism, about power, around feeling that value is just to have power."

To truly be able to take the perspective that Vanier describes, I must work on developing a Romans 12:2 kind of perspective. How could I learn to live the message of Jesus unless I seek to, "be not conformed to this age but be transformed by the renewing of your mind, in order to prove by you what is the good and pleasing and perfect will of God."

We cannot really understand the message of Jesus if we haven't listened to the weak, those who are seen as having no value. Useless eaters as the Nazi's called them. but I am steeped in elitism and power and the feeling that value is to have power. I am entangled and ensnared in those values that I have been socialized into believing. I, we need to ask God for the transforming of our minds in order to reflect Vainer's vision of being like Jesus.

McNair
(fcbu)

Inclusion vs. nonexclusion

I had the pleasure of having lunch with a friend of mine, Arthur Seale. In the midst of our discussion, Arthur made the comment something to the effect that rather than working on inclusion, we should be working on preventing exclusion. He and I then went off on a variety of ideas about how in a variety of places (the church in particular in our discussion) develops places of inclusion instead of preventing exclusion. So for example, we say, "Disabled person, you can be participate by being involved in this program created for you, or you can participate in this program where the people will not exclude you." Such statements are a far cry from inviting someone to full participation in the church. Imagine if you were joining a church and the places in which you might participate were described in such a circumscribed manner.

"You can be a member of this group because it was designed for people with your personal characteristics. This is the place for disabled people. However, you cannot be involved in this other group because the people either
1) will not accept you because of their prejudiced notion of who you are,
2) are not willing to alter the way they do things, their structures, in order to accept you,
3) are not willing to do anything extra to facilitate your participation,
4) are uncomfortable with your personal hygiene, your appearance, your manner of dress, etc."

Now obviously we wouldn't expect men to be members of the women's group or vice versa. Nor would we expect children to attend the high school group.

Our efforts should be at carefully looking at the structures of our church and remove those things which would exclude people who should be a part of whatever group they would typically be a part of. So I would expect all of the men with cognitive disabilities to be a part of the church's men's group. There is no reason for them not to be involved. And if we truly do believe that we are all equal in God's sight, we should be making the same efforts to involve them that we would for men who are not experiencing disability. It is not like they are damaged goods or something, so we should not treat them as if they are...and we do treat them like they are.

I was reading the John account of the last supper. In the midst of arguing over who was the greatest (something that I have never heard adults with cognitive disabilities do, but have heard from state university professors) Jesus strips to his underwear and washes his disciples feet. Upon finishing, he says that if your Master would do that for you, what should you do for each other? That is the interesting thing about true service, it is fully inclusive and not at all exclusive. I don't need to set up a separate room for washing the feet of the disabled people because their presence bothers those currently not experiencing disability. If we are all trying to be modeling the behavior of our master, we would be vigilant to look for ways in which those who might be served are getting access to being served, and/or serving them ourselves. The last thing we would do would be to construct obstacles to people finding their way to the Lord, and our having the opportunity to serve. I think we have gotten to the point that we think service is about being served, not about serving. If the capital C church truly believed in service, there would be more people needing service there. The presence of persons with disabilities would be one great evidence that that particular church was one that fought exclusion and worked at serving.

McNair

Montreal summit 2006

I was very excited to attend the recent Montreal summit, and continue to reflect on my first experience at a truly international conference. It was delightful in very many ways.

I recognize that I see the world through glasses colored by my perception of what the church might be in supporting people who are disenfranchised in various ways, particularly persons with disabilities, however, I came away from the conference amazed at the various presentations about community integration and inclusiveness which were friendly toward the role of religious groups. Several presentations specifically mentioned the benefits of religious group involvement (including my own). Others spoke about linking persons with disabilties to existing community networks as means toward community integration. Oftentimes I felt as if the next words out of a presenter's mouth would be "you should introduce your friends with disabilities to the benefits of church membership."

In my own presentation, I spoke of how supported employment has become the obvious answer to the question of how to facilitate employment for persons with cognitive and other disabilities. I then went on to say that I believe that church involvement will ultimately be just as obvious a solution to community integration of persons with cognitive and other disabilities. I honestly do believe that. And it will be a great boon for the church! The community will see the church working the works and will be drawn to it. It is tough to argue with people who are reaching out to those that society has overlooked. People who would typically never set foot in a church will come because they will see the church as a place where their child with disabiltiy is wanted, is accepted and integrated. The witness of a church which goes into the community to serve those who have been ignored in the past would be appealing and irrestible. But not just to serve them, but to enter into a relationship with them. Who desires to be with them. Who wants to be in their presence and wants them to be a part of the group: membership, not just service or charity. Funny how obedience does that. The community is ready, persons experiencing disabilities are ready ...

McNair
(fcbu)

The why of disability

In the last week, I have had 2 separate discussions with friends about the question of why people have disabilities (particularly congenital disabilities). The one setting was at an international conference in Montreal. There were professors from Belgium, Netherlands, and several important people from the disability world in the United States in that group. The second group was with some close friends of mine with whom I meet regularly, one a psychiatrist, the other a professor and philosopher.

In the first setting I asked whether they felt disability was the result of the Fall, or was just a part of the natural range of human diversity, or something other that hadn't occurred to me. I was chided for even asking the question in the first place. "Who are we to questions God" was the response from one member of the group. I feel like I can ask questions of God about anything. Particularly because my question is one of trying to find understanding, not trying to question God's wisdom (although I would ask those questions as well if I had them). God is big enough to take our questions and either answer them or guide us through the process of further trust in him without a specific response. I left that discussion thinking that surely these people had thought about this question even though the weren't very interested in discussing the possibilties.

In the second group, the answer given to me was more of a "what difference does it make" kind of response. Now as far as I am concerned, it makes no difference in my day to day interactions with people with disabilities. However, there are many spurious notions of the why of disability floating around out there and there are people who ask the question for a wide variety of reasons. If I say that disability is not the result of the parent's or the person with disabilities' sin (see John 9) to use a reason sometimes provided in Christian circles then I must look to other reasons. Is the reason the syrupy sentimentality about specialness? Are people with disabilities actually angels who are unaware? Are they there to teach us something, i.e. living object lessons? If I am going to refute these ideas, do I simply say "I don't know what the reason is but it not what you say it is?" I can test some ideas against the truth of scripture (eg. the result of sin notion) which can support or refute an idea.

One of my friends in the second group said that it is not the event in itself that is important but the fact that God is with us through the event. He cited stories about the twin towers incident on 9-11 and how God's presence was made real to the fire fighters through prayer and encouragement when they took brief breaks from their heroic efforts. I heartily agree that God is with us through all the circumstances of our lives. That is not an issue for me.

I guess the reason why this question is important to me is that if I am to say that your reason for the why of disability is not biblically sound, I need to also say this is what the biblically sound reason is. I also do recognize that we are to trust in the Lord and not lean on our own understanding (Proverbs 3:5). If we do that, God will indeed be with us and as the verse says will make our paths straight.

So this is not a point of faith for me; my faith is not tied up in whether I get an answer to this question. But it is a point of understanding. An understanding largely of who God is through the work of his creation.

McNair

Community Integration

This week I am headed up to Montreal for a conference on social inclusion of persons with disabilities, particularly those experiencing mental retardation. As I plan to attend the conference I am increasingly more confident about the role the Church has to play in the community integration of persons with disabilities and their families. It is pretty easy to make the case for Christian churches (and most other religious groups for that matter) as the place where disenfranchised, devalued individuals can find integration into the community.

If you think about the Church, it exists to worship and serve God, to do what is right as well as it can understand it, and to support its membership. We have also received a call to go out into the world and make disciples of all nations, so there is an outward focus as well. In each of these areas, the inclusion of persons with disabilties makes perfect sense. They worship God, they try to do what is right, and are quick to help others if given the opportunity. I have found that they also do what they can to speak to others about God, or at least have a positive witness. Through simple efforts on the part of the Church, community integration might also be facilitated.

The secular human service world is pretty much desperate to find ways in which persons with mental retardation can be integrated into the community. All the while, there is the ubiquitous presence of churches. Those in human services, particularly those in academia who prepare human service workers are often unchurched or have a negative perspective towards all things religious. On the other side, the Church is blind to persons with disabilities, quite often, and is blind toward things related to disability. Over the years, I have been trying to help the secular see the potential of things religious and the church to see the potential in things "disabled." God willing, one day, the two will come together and the outcome will be beneficial for all three. The secular will see the benefit of integration through the church, the church will see the benefit of being obedient to God in including persons with disability in the church and the persons experiencing disability will have the benefit of knowing what it is to be integrated into the community rather than being ignored or discriminated against. As I have said elsewhere, one day the involvement of persons with mental retardation in churches, their referral to a church by a secular agent of the state may become as obvious as taking an aspirin for a headache.

McNair

"The ministry is already full"

I heard an interesting, true story the other day. A person was being interviewed for a position as an assistant to a ministry to persons with disabilities at a local church. In the midst of the interview, the person from the church doing the interview asked something to the effect, "Why does that ministry need to grow. The ministry is already full."

Now this comment is interesting and appalling from a variety of perspectives. How does one know when one's ministry is full? A room might be full or a theatre might be full, but what constitutes a full ministry? Are all the people who might be served already being served? That would be great if it were true. What if we were talking about children. "Don't bring your children to church, our ministry is full." Or High School students..."We will no longer be allowing you to bring visitors to the High School program because that ministry is full." Can you imagine, if the church was doing a ministry to a particular ethnic group, and the comment was made, "That ministry is full." In other words, we have enough of those people down here. "Our ministry to white Irish people is full (I'm Irish)." "We don't need anymore Irish people down here." I would never be allowed to get away with such a statement. However, because we are talking about people with disabilties, I as a person of authority in a church can say with confidence, "We have enough disabled people here. No need to bring in any more. The ministry is already full."

This is the discrimination which periodically rears its ugly head in the church and could easily be passed over if someone wasn't sensitive to the issue. The fact that someone could say such a thing is amazing.

One note, this blog starts my 3rd year of blogging at this website. I have seen some significant changes nationally and in my own church. I think this is truly an idea whose time has come. There appears to be greater interest and receptivity. I also wanted to mention that I am working on putting many of the ideas together into a book form which I hope to have published at some point. Should things progress in that area, I will let you all know via this website.

Thank you for your interest over the past 2 years.

McNair
(fcbu)

Removing the feeding tube

I just heard that a lifetime friend of mine who had fallen into Alzheimers disease has possibly had her feeding tube removed. Both she and her family are absolutely wonderful people. They have been a model for me of love and caring in an extremely difficult situation. But apparently the disease has progressed to the point that the decision to remove the feeding tube has been made.

I must admit that I am very conflicted on this whole issue. Knowing these friends the way I do, only adds to my conflicted feelings.

On the one hand this is the active taking of a life. There is no way to remove food from a person without having the effect of taking his life. So this is a conscious decision to take a life, to kill someone to put it bluntly. When I state it in this manner it seems obvious that to remove the feeding tube is wrong.

Yet, if a person is at the end of her life as my friend is, is it humane to deliberately take her life? The fact that I would even entertain such a question makes me wonder about the degree to which I have bought a secular, liberal society's understanding of the value of life in its various forms and its various stages. Clearly my friend is not suffering by any measure that can be made. So the suffering that is being alleviated is not hers. Who knows where her mind is at this point in time? Is she better off dead? The death process will be made "easier" through the delivery of pain medication. The apostle Paul when confronted with the choice between life and death says that he doesn't know what he should choose. He says to die is gain. Should I usher others into death because I believe to die is gain? I hardly think so.

For myself, I would of course hate to be a burden to my family. Particulary me as a large person would be difficult to care for, to move around. However, I also would not want the taking of my life to be at the hands of my family. Because society would allow my wife to remove the feeding tube from my body, does not mean that I would want my wife to have my death on her hands no matter how humanitarian she might think she was being. You see it is one thing to remove various life supports from me such as medicines or other dramatic measures to keep me alive. It is quite another thing to stop feeding me. If food is keeping me alive than I am no different than anyone else. I am no different from children with severe disabilities. Your decision to stop feeding me now becomes based upon your judgement of the value of my life.

What criteria might you use to make a determination of the value of my life? Perhaps you might use a return on investment criteria, or my potential contribution, or something of that sort. The question is why would you enter into this discussion in the first place? Why would you enter into a discussion of how to determine whether someone's life is worth living? Particularly when you cannot get the perception of the person themselves who are living under that set of conditions. Additionally, as soon as we enter into the discussion, we affirm that there are some lives worth living and some which are not and those who would take life win the point. Perhaps a better position would be to simply say that I will not have this discussion because I know where it leads. Are we unwilling to say that all life is valuable and precious, or can we be brought to a point where we will say that a particular life no longer has value, based on a set of criteria which we would probably not be willing to see more broadly applied?

I have mentioned before that I am reading a book called "By trust betrayed" which is about the taking of the lives of persons with various disabilties during the time of the Nazis in Germany. Yes there was great evil involved in the practices which led to the deaths of hundreds of thousands of persons with disabilties. But there were also many who felt they were providing humanitarian aid to people they perceived as suffering. So there were those who honestly felt they were humanitarians of the highest order (the difficuly of their decisions only adding to there love for the people they chose to euthanize) when they sent people with epilepsy or schizophrenia or mental retardation to their deaths. It seems that there was also the proverbial "slippery slope" where the killing of the most severely disabled led to the killing of less disabled and less disabled, etc.

Are people better off dead? Would we be willing to have the process we moved through to make decisions to stop feeding someone be broadly applied? Are we willing to have death on our hands, independent of absolute love and desire for the best for a person that went into such a decision? Is it really heroic on our part to make a decision for death for a loved one who we perceive is living a life not worth living? Should I put such a decision on a loved one?

These are the questions that swirl through my mind as I think about such situations.

McNair

Crash again

In the previous post, I related the scene from the movie Crash about the white cop and the black hitchhiker. Please revisit that description.

Another aspect of that interaction intrigued me. I suspect that the hitchiker thought he was connecting with the cop, or at least thought he was attempting to connect with the cop. He talked about how he liked hockey, which he was socialized to think was a characteristic of white people. He also gave the impression he was developing an interest in country music. Once again, a good old white boy, driving an old car, the hitch hiker thought he was connecting with the cop when in reality he was illustrating his misperceptions about who white people are (true the cop was listening to country music on the radio).

We do the same thing with people with disabilities. We assume we know something about them because of the things we have been told, the way we have been socialized.

My daughter Amy and I love the film Good Will Hunting ("How do you like them apples!?). One of the scenes which we love is when Robin Williams' character confronts Matt Damon's character who has intimiated that he understands what it is like to have the life experience that Robin Williams has had. Williams' character asks whether Damon knows what the Sistine Chapel smells like because he has read about Michelangelo, or what it is like to hold a dying friend during a war because he has read War and Peace, or to go through the cancer of a loved one because he knows something about cancer. Williams also asks whether he (Williams) would know what it is like to grow up as an orphan (like Damon) because he has read Oliver Twist. The answer to all of these questions is obviously NO. Yet the Damon character acted as if he understood Williams without any life experience.

We do that. We do that all the time with people with disabilities. I must constantly remind myself that many of my friends experiencing cognitive disabilities see themselves as totally normal. My friends with down syndrome see themselves at TOTALLY NORMAL. They are living their lives and are pretty much happy with their lives. Others, however, think that they know what it is like to be disabled so they want to "alleviate their suffering" through abortion. They think they must be upset with their lot in life. They think that their disability consumes them. I don't know how to say this any more clearly.

THEY SEE THEMSELVES AS NORMAL.

There is nothing immoral about their disability or their perception of themselves in that way. It does no harm to me or anyone for them to see themselves as normal. It doesn't cost any more money for them to see themselves as normal. Yet we project our ideas on them and attempt to interact with them on the basis of our stereotypes and constructions of who we think they are.

What has the Church intimated about how it feels about people with cognitive disabilities? Do our actions indicate that we think they are just people? Does the Church's interactions in any way indicate that it sees people with disability in the way people experiencing disability see themselves? Or is the Church like the Matt Damon character, who having no experience, thinks he knows something? Matt Damon had an excuse as he was an impoverished orphan living in slums. What is the Church's excuse for not knowing or understanding?

What will it take for the rest of us to see people experiencing disability through their own eyes?

McNair
(fcbu)

Crash

I finally had the opportunity to view the movie Crash, recent winner of the Academy Award for best picture. I found the film very thought provoking on a variety of fronts, however, one scene in particular struck me.

Throughout the film, you get to know a character who is an reflective/thoughtful African-American man who is the brother of a city lawyer and a car thief. You also learn that he does 3 things which the film portrays as uncharacteristic of a black man 1) he loves hockey, 2) he has a developing interest in country music, and 3) either he is Catholic, or simply has an interest because he carries around a St. Christopher statue that he puts on the dashboard after he steals cars. Anyway, in the scene which interested me, an off duty white police officer, a young idealist who has recently raised complaints about racism on the LA police force, picks up the car thief who is hitch hiking. In the course of the conversation, the black guy mentions that he was in the area of the town ice skating because he had always wanted to be a goalie. The white idealist doesn't believe him. The black man says he is developing an interest in country music which once again the white guy doesn't believe. Then the black guy looks up at the dashboard, and there is the same statue that he always carries around. He just starts laughing. The white guy gets angry and tells him to get out of the car, he thinks he is being mocked as no black man, likes country music and wants to be a hockey goalie. The black guy says to hold on as he reaches into his pocket to get the statue that he always carries of St. Christopher. At that point, the white guys tells him to keep his hands where they can be seen, but he keeps digging in his pocket to get the statue. As he pulls it out of his pocket the white guy shoots and ultimately kills him. The statue falls out of the black guy's hand.

As an observer, you sit there stunned. How could this happen? The complete disconnection between two people is perfectly illustrated. It is as if each of them approached the other through the socially constructed stereotypes they had been socialized to believe and when the black man in particular, did not meet the stereotypes of the white man we end up on very uncomfortable ground, where we don't know how to act or relate. In spite of the evidence otherwise, we act on our stereotypes. In the off duty cop's mind, the black man was obviously in the area of town, not to ice skate, but to rob or be involved in some sort of criminal activity.

How do we see persons with disabilities? What stereotypes to we bring to our interactions with them? What do we do when they do not meet the stereotypes we have for them? For those of us who are working to change the Church, what negative stereotypes do churches and those in leadership bring which result in the demise of those they would claim to help. In reality, the white cop was apalled at racism when he saw it. In the same way, the Church speaks of all people being equal and loved by God. But ultimately, when confronted with a real person, the white cop's racism came through as well. He wasn't specifically harassing people, and was even trying to help people who had been victims of racism (another of the movie's powerful scenes). But inside, he was capable of killing another person largely on the basis of his racist stereotypes which were just below the surface. The church also has discriminatory stereotypes, particularly about people with disabilities, which are "killing" people through their exclusion.

In the same manner that Crash expertly puts the finger on racism and race relations, we must do the same with discrimination against persons with disability where ever it might appear, but particularly within the Church.

McNair (fcbu)

"Points of insubordination"

I have been reading some Michel Foucault (which may worry some of you). Actually, I am reading the writings of others who are translating Foucault for me, and I am not just talking about the French. One of the most interesting ideas shared is that of "bio-power." I quote an article from Tremain's book, Foucault and the government of disability where Martin Sullivan quotes Foucault,

In short, rehabilitative medicine fits Foucault's description of subjecting power insofar as rehabilitation is "a form of power...which categorizes the individual...attaches him to his own identity, imposes a law of truth on him which he must recognize and with others must recognize in him. It is a form of power which makes individuals subjects" (1982, 212).

Later in that same article, Sullivan mentions Foucault's idea of rebelling against subjecting power through acts which are called "points of insubordination...which are a means of escape." by virtue of their birth, individuals with various congenital disabilities fall under subjecting power which identifies them, ascribes an identity to them, imposes a "law of truth" on them which he and those around him must submit to. The problem with most of the evidences, the "behaviors, objects and language" (Berger & Luckman) of this subjecting power is that unfortunately, they are untrue. The only way to break out is through points of insubordination, by not going along with the program. The people with disability, particularly cognitive disability, haven't the ability to recognize their subjugation, and wouldn't know what to do if they did.

Burton Blatt wrote an interesting book many years back called "Revolt of the idiots" about a group of residents of an institution who revolted against those in charge of the institution. It was of course pure fiction but it resonated with me. In terms of changing things in their lives, persons with cognitive disabilities are rarely going to be able to be their own advocates. I recognize there are many excellent self-advocates in the disability movement, but such advocates are rare.
It is we who are the ones who must recognize the subjecting power being applied inappropriately to persons with disability and we who must engage in "acts of insubordination" on their behalf. Let me give you two examples of what I mean.

One happened many years ago. I approached a pasor at my church and told him that I wanted to begin a ministry to adults with disabilities. His response was that it is not a priority. In some ways, he was using subjecting power on both me (in my disire to do ministry) and persons with disability in categorizing them as not a priority. My response to this subjecting power was to engage in a point of insubordination. As Kathi and I left the meeting, I remarked to her, "It will become a priority when I start bringing adults with disabilities down here." Kathi didn't punch the pastor in the nose, but our attitude and ultimately behavior was insubordinate. I don't vilify that pastor anywhere, in fact he is a friend of mine, but I was not going to go along with the subjecting power that was weilded.

Then recently, I had the opportunity to speak in a chapel at a local Christian school. The focus of the week was on calling, so I was to tell them how I came upon the calling I believe I have. I briefly shared how I felt God had led me to the calling of including persons with disabilities in the Church and its agents. I then went off on how a person with disability could never attend that school. That although that school sets itself up as one which represents Jesus Christ to that community, in reality it doesn't because of its exclusion of persons with disability. Once again, an example of insubordination. I didn't burn the school down, I just wasn't totally obedient.

I believe we need to engage in these types of behaviors on occasion in order to get people's attention. As Christians, we can sometimes be so nice that no change will come. I would encourage you to be insubordinate if it opens your church to persons with disabilities. However, remember that as with the message of Christ, the message might be offensive but we are not to be. I confront, but not to ridicule or embarass. My attitude has to be one that calls the Church to obedience.

McNair

Secret Girl

I read a recent article in the January/February issue of the AARP newsletter (no cracks about my age please, my in laws graciously provided the article to me). Anyway, the magazine has an excerpt from a book entitled Secret Girl by Molly Bruce Jacobs, which is scheduled for release in March of this year (2006). I have not read the book, but would for the moment recommend the article. The book is about the placement of a girl in an institution by her family and her ultimate reuniting with her family through her sister, Molly. Here is a quote from the article/book.

The notion I'd conjured in my imagination decades ago-that Anne was my dark antithesis-faded rapidly. Instead I began to see her as my counterpart, one I'd lost touch with long ago. She had what the world I grew up in had supressed in me, what drinking had numbed. In spite of her disabilities, she was everything I wasn't, or what I'd imagined I wasn't allowed to be. She exuded the joie de vivre that dries up in you when you're raised to believe that the trophies and rewards you accumulate will make you happy, and that the pursuit of truth and beauty is only for dreamers and fools. Blue blooded manners had not made her self-conscious. The light in her eyes had not dimmed with complacency. Formality had not put a lid on her howls of laughter. If she felt like dancing, she danced-wherever she was. If she wanted to sing, she sang-whatever song happened to drift into her head. When she had an urge to smell your hair, your cheek, or a magazine, she leaned over and sniffed. She was in every sense of the term a free spirit.

You know that freedom that free spiritedness is something that persons with cognitive disabilities can bring to the church. The joy of life. The freedom of being unconcerned about the judgement of others.

In Becoming Human, Jean Vanier has a chapter called "The Path to Freedom." In it he writes,

We set out on the road to freedom when we no longer let our compulsions or passions govern us. We are freed when we begin to put justice, heartfelt relationships, and the service of others and the truth over and above our own needs for love and success or our fears of failure and of relationships.

The Church could learn these things if persons with cognitive disabilies were regularly in their midst. But in the same manner as Secret Girl, we have sent them away, at least in terms of not having them in our midst.

Molly Bruce Jacobs talks about how her sister asked her, "How was your vacation" because that is what her sister had been told as the reason no one had ever come to visit her. Your family is on vacation...for 30 years. Her response upon seeing her sister was not and angry "Where have you been for 30 years." It was a loving, and Jacobs argues, forgiving, "How was your vacation."

How was your vacation, Church?

(fcbu)
McNair

Proverbs and Jeremiah

Proverbs 3:5

Trust in the Lord with all your heart, don't lean on your own understanding. In all your ways acknowlege him and he'll make your paths straight.

Jeremiah 29:11

For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future.

Oliver (1990) states,

They also see themselves as pitiful because they are socialized into accepting disability as a tragedy personal to themselves.

There is a disconnect between the ideas presented above, at least there is for the Christian.

In all our life circumstances we are encouraged to trust in the Lord, because He can be trusted. He loves us and has a plan for our futures. However, disability seems to totally throw us into a tizzy. We loose our balance. We, due to our socialization, accept disability as a tragedy. Now clearly tragedy enters the lives of people. I just wonder sometimes about disability, as tragedy. Does tragedy happen which causes disability? Of course. There are car accidents, and violence against people. But for the moment, lets consider congenital disability. That is disability that people are born with. I am not naive enough to say that life with a child with a disability is always easy or even mostly easy. I just wonder about how I think about disability when the Bible which I claim to base my life upon tells me things like the above. I also wonder to what degree the socialization of disability as tragedy is reflected in the life of the Church which claims to be built upon those same verses listed above?

Disability brings challenges. We have translated challenges into tragedy. Because we have done that, they truly do become tragedy. Because the Church has not stepped forward to support all members, including persons experiencing disability and their families, the likelihood that disability will become tragedy is increased. If I can trust the Lord, and if my Church will support me as I move through the challenges of having a family member experiencing disability, then the works of God will be made manifest (in family members, the person experiencing disability, and the larger Church community) (see 4/1/05 blog entry). However, if I interpret disability as tragedy, what is there to do but mourn and try to make the best of things. Somehow I don't think that is our calling. It definately has become our behavior, our experience, but I don't think it is our calling.

There was this totally spurious method of working with persons with severe disabilities several years back. I don't want to give you the name of those who advocated it or the name of the procedure as I don't want to give it any support whatsoever. However, the upside of the approach was that it brought the community together to help the family to help the child with severe disability. That aspect of the program was truly inspiring and remarkable. Imagine a group of people coming together to support a family in the same manner, only their support was not based on some false approach to working with people with disability, it was based on God's word. The results would be amazing.

Once again, we need to not be conformed to the world, but be transformed by the renewing of our minds (see blog post 3/17/06). Interesting, isn't it, how what has become the "obvious" might fall away in the light of the truth of the Bible, if acted upon by the Church.

(fcbu)
McNair

"Don't be conformed to this world..."

Romans 12:2 says,

Don't be conformed to this world, but be transformed by the renewing of your mind, so that you may prove what is the good, well-pleasing, and perfect will of God.

It takes courage for pastors to embrace a ministry to persons with disabilities. I mean to REALLY embrace such a ministry. It causes ministry structures to change in order to be inclusive of all who might wan to participae in the programs of the church. It takes courage because there will be resistance to change generally, resistance to people who haven't yet and perhaps never will master social skills, and many congregational members may feel uncomfortable. At least they may at first. Some may complain and claim they are not "being fed" (meaning, I guess, that the bottle has fallen out of their mouths). The response is not to exclude, but to change the way that things are done such that more individuals can be involved. The fact that current ministry structures do not include persons with various disabilities implies that they were developed without the involvement of persons with disabilites in the first place.

For example, there is a church that I know of whose youth program is held on the second floor of a building with only stairs to the second floor. This is more than just an ADA issue. Clearly there are times when ministries will be designed for specific groups (recovering alcoholics, victims of various forms of abuse) but the more "generic" programs should be reflective of a perspective that errs on the side of being inclusive of all who would choose to attend.

People with disabilities, particularly those wih physically obvious differences (like down syndrome) are an easy target. I can see the outward evidence of their disability in their facial appearance. I can link their cognitive disability quickly to a physical appearance and dismiss them. It is harder to design ministry that aims at and forsters a wider range of "normal."

I have heard pastors wonder aloud, "What do you expect me to do?" Well, I expect you to speak about persons with disability from the pulpit, to advocate for their inclusion in the programs of the church. To encourage the congregation to get out there and bring them in. I first expect pastors to use their pulpit to develop awareness. I would then expect them to be involved in the ministry, if only making an occasionally appearance, or taking the time to interact with class members. I remember a pastor of mine, Dr. Paul Cedar, once chose a man with developmental disabilities to be his weekly prayer partner for midweek Bible studies. This was a year long committment. This spoke volumes to the congregation about who he felt persons with disabilities are. I expect pastors to not be conformed to the patterns of the world as they are reflected in the structures of the church, but to be transformed by the renewal of their minds. What would a church look like who truly included all individuals who would choose to paricipate? What demands would be placed on the congregation to ensure that persons who do not have a driver's license got to church? It is easy to say you will include me if I come when you know full well that I have no ability to get there other than perhaps hours on a bus.

Then an issue that I continue to struggle with is what would inclusive programs look like? I don't think that the whole church should revolve around any particular group of potential members, but what changes might be implemented that would both indicate to the congregation that these individuals are a priority, that they are worthy of our time, and also would not exclude them on the basis of contrived criteria for program involvement? To what degree is intelligence (for example) a criteria for involvement in the Christian church? If it is a criteria, what does that imply about our programs, who we want to be involved in our programs, who we think the church is for? Clearly intelligence (continuing to use this example) is important for attending college, or being able to perform in some jobs. But is intelligence critical for church involvement? Is intelligence critical to being a follower of Christ?

We need to step back and consider the way we do things in the Christian church. We need to reflect on the degree to which our programs, our structures are reflective of something other than a renewed mind, under the control of God's Holy Spirit. Are we doing things because they are the best way of doing things or are we doing things because we either cannot or will not be transformed by the renewing of our minds?

McNair