$61

Well I finally got fingerprinted so that the group home I had been visiting would not get into trouble. Believe me, I totally understand the need to protect persons with disabilities, particularly those with cognitive disabilities from people who would take advantage of them. I want them to be protected. However, I also realize that the fingerprinting is another hurdle in the way of friendships between people with disabilities who live in group homes and community members who might potentially befriend them.

In a conversation with a woman who represented those who were evaluating the group home, I asked what might be done to make it easier for people to be involved with group homes and not have to pay the $61 for fingerprinting? She indicated that the group home could reimburse those who were fingerprinted for the costs. I can only tell you that not all group homes are interested in paying money for anything extra let alone just to have someone be a friend to a resident. Then there is the issue of multiple people being involved. One group home I was involved with probably had as many as 10 people involved with the residents. Would the group home pay $610 so that those people could be involved with the residents? I would seriously doubt it. In addition, what if there were turnover in those from the church who were involved with the group home. How many times would the group home be willing to ante up the $61 for a new friend to have visiting rights after fingerprinting?

No, this is an example of another barrier to community integration of persons with disabilities instituted by the human service systems who, with the best intentions, contribute to the problem of isolation of adults with cognitive disabilities.

The woman I spoke with from the agency said that the law would need to be changed for there to be a change in the fingerprinting requirement. Understand me that I am not trying to get the protection of vulnerable people removed. I am trying to protect people while at the same time facilitating their integration into the community. I am planning to contact my state legislator's office to explore the issue. Perhaps a solution is a much reduced cost for such fingerprinting and an expedited system. If people aren't interacting with persons with disabilities when they don't know the hoops they have to go through to do so, what would their reaction be if they understood the requirements that they would have to meet to be a friend.

This will have a particular impact on the church where there could be many who would be involved with people with disabilities. I can't even imagine what might be required. For example, should an adult with cognitive disabilities go to a church, how many of the people in the church have to be fingerprinted?

Perhaps it is time we pushed the envelope a bit in a kind of a preemptive strike such that that excuse would be removed as a reason for no involvement.

McNair

Exercising your love muscle

I haven't worked out in probably 3 months.  I am not looking forward to starting up again, but Monday is the day.  Anyway, it is tough getting into shape.  You recognize how you have been a slug, and your body rebels.  It hurts for a while, but ultimately once you get into shape it is great.  You look forward to your workout each day.  But until you decide to do it and then stick to it, your muscles will always hurt because you are always starting over again.  Once it becomes a pattern in your life, it is easy.

Love is like that.  If you always love people who are easy to love, it is like sitting on the couch all day.  You never push yourself, and anytime you are confronted by someone who is in any way difficult to be with or to love, it "hurts" and it is hard.  Perhaps people have poor social skills, or are unkind or make demands on you because of some need they have.  Your choice is to say, "This is too hard, I quit" or to stick with it and like exercising a muscle, it begins to get easier.

I can tell you that after 30 years of befriending persons with cognitive disabilities, loving them is much easier for me than it would be if I had never had any interactions with people with such differences.  The answer is to be with people with differences as you will be stretched. You will learn to love people who may be different than the typical.  You will grow and develop and over time it will get easier.

But for love to happen, the decision has to be made that I am going to love other people even if it is difficult for me.  If I am committed, over time it will get easier...it is a principle that can be counted on.

McNair

99 Balloons

My wife Kathi, turned me on to a wonderful video entitled 99 Balloons which you can view at the website listed below.
http://www.ignitermedia.com/products/iv/singles/570/99-Balloons
In a nutshell, it is the story of a young couple who via prenatal diagnosis discover that they are carrying a child with trisomy 18, a chromosomal difference that causes children to have severe intellectual disabilties, and who typically die within their first year of life. This couple, the Mooney's, however, do not take the route of abortion, thereby "preventing" the birth of the child. They have the child and take you on a journey with them through Eliot's short life. It is a wonderful video, very life affirming.

It reminded me of a book I read a while back called Defiant Birth which I wrote about in this blog on 8/11/06. In that posting I wrote the following:

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, 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. They also spoke of the impact for
good the birth of the child had on their lives.

These types of stories are an affront to too many in the medical profession who advocate prenatal diagnosis and abortion. In an Animal Farm kind of way, they describe this procedure with words like "prevention" but we are talking about the killing of an infant. It is particularly insidious to me that people, particularly women who are in a very stressful, very unsure position are not given all the information in order to make their "decision." Even the notion of a "decision" as to whether someone should live or die reflects a position in favor of death. I don't get to make decisions about the people I work with because that is immoral, and should I make a decision to take someone's life, there is a good chance that justice would prevail and I would loose my own. Yet in the case of a newborn with severe disabilities, we have engaged killing by couching it as a decision. I have had many interactions with the medical profession which supports my feeling that they are morally and ethically lost.

I once worked with one of the top physicians in disability in the country. This doctor is known for his work on behalf of children with disabilities. However, I often accompanied him when he would tell parents or teach students to just tell the family who have received a prenatal diagnosis of disability to "abort and try again." That is all that life is...abort and try again. Could I cheapen the value of a life any more than to dismiss it by saying, "kill it and have another baby." This is wisdom in the eyes of many in the world, and many in the medical profession.

In another instance I was a medical student taking a class in Genetics. After you have watched the 99 Balloons video, consider this. The professor speaking specifically about trisomy 18, what Eliot had, told the medical students, "You can reassure the parents that the child will die in the first year of life." Once again, I am struck by the perception of the lives of people with disabilties as perceived by the medical profession. It is portrayed that their deaths are a blessing for themselves and all those around them. We can relax, and be comforted by the knowledge that they will soon be dead.

Videos like 99 Balloons and books like Defiant Birth are critical strikes in the war for life. They are an attack on the supposedly conventional wisdom about disability and we need many more of them. We also need people with severe disabilities to have a presence in the church.

I remember in the whole Terry Schaivo incident, whenever reporters were filmed at the scene, in the background, there were many protesters holding signs which often had a Christian message. Christians are quick to condemn the taking of innocent life as they should be. But I also wondered how many innocent lives of persons with severe disabilities were present in the churches of those protesters. You know, it is one thing to talk about fighting home invasion and quite another to invade my home. I will fight to protect the life of children, but I will go much further when it comes to my own children. If people with severe disabilities are in our churches, our fight for their lives will become more heated, more urgent. As it is, we are fighting for an ideal, not for our friend who sits in the pew next to us (imagine if persons with severe disabilities were actually in the pew next to you...I pray that God will make it happen).

May God bless this little family who had the courage to bring their severely disabled child to life, to love him for 99 days, and to have the wisdom to film their experience such that we can all be edified by it.

McNair

Inclusion in the public school

One of the main reasons given for including people with cognitive disabilities in regular classes is for the purposes of developing social skills. I have been thinking through that idea lately and I am not sure that I agree with that. The assumption is that social skills cannot be learned unless someone is with people without disabilities which to my knowledge is a question that has not been addressed by research. Yes, people can learn social skills in a general ed setting, but that is quite different from saying that they cannot be learned in a special education setting.

Another issue is that through inclusion programs, we are supposedly preparing people with cognitive disabilities to live with people without disabilities. That is, they will need the social skills to be with people without disabilties. Well, the best that I can tell, there are a lot of people with cognitive disabilities who do not spend much time as adults with other adults who are not disabled, that is, other than those who are paid to work with them. So there is a fallacy in that argument. In addition, why would the focus of social skill development be to facilitate inclusion with persons without disabilities? It is like a person with a disability hasn't lived until they are integrated with a person who is not disabled. That is the feeling of people without much more than people with disablilities. I think that persons with disabilities are much less discriminating (in the most positive of ways) about their friends than are people without disabilities. My cognitively disabled friends see friends, less often discriminating between those with or without disabilities...they just see people. I, on the other hand, seem quick to categorize people as disabled or not, which is my problem.

In reality, the main justification for inclusion programs if one looks across the life of persons with cognitive disabilities, would be to change the enviornment, to change people who aren't currently experiencing a disability. They will gain a great deal in such relationships, they will grow and be softened.

McNair

From Sunday School to Seminary

I have been doing some writing lately related to the topic of inclusive religious education. I will keep you posted as the publication I am working on with a wonderful group of experts is made available.

Anyway in working through some of the ideas, I thought about religious education "from Sunday School to seminary" in relation to people with disabilities. Rarely are children with disabilities included in Sunday school to the degree such children are present in the community. In interactions with Chrisitan kids at church, I have asked them where they have had experience with children with disabilities, and most often they will say in their class at public school. Some will relate experiences with children at church, but most experiences are not had at church. The same would be characteristic of Bible study groups of young people in Junior High School, High School or College. Few if any contacts with persons with disabilities as members of those groups, as the focus of ministry in those groups, or as a topic for discussion in those groups. They are ignored. In college, students study the Bible, or church ministry. Once again, it is as if people with disabilities have never existed. Even in Bible classes, where you would think people might be impressed by the text of the Bible (particularly the Gospels) that they are studying, little if any mention of disability or people affected by disabilities. In Christian ministry programs (I have personally spoken with directors of several) when asked if disability is mentioned in any of the classes, the response is either "No" or as a point of discussion in some ethics, or bioethics class. Finally, in seminary, perhaps the highest level of training of people preparing for leadership in the church and in ministry, once again there is little if any discussion of people with disabilities.

I have stated this elsewhere in this blog, but the US census says that nearly 20% of the population are people with disabilities. But to those in education in and around the church it is once again as if people with disabilities do not exist.

As I have thought through this, it tells me something about Christian religious education. To me at all levels, Christian education has a serious flaw. That people with disabilities would be overlooked on every level tells me that all levels of Christian education are wrong. They are wrong because they overlook some of the most needy, the poorest, the most disenfranchised people in the world. How could any group that claims to be Christian be so blind as to miss this group? To miss such a group in the light of the Gospels and the example of Christ is so wrong. Have those who do Christian education never met a person with a disability, never met the family of a person with a disability and recognized the societally imposed travails those people face? I don't know which would be more disconcerting...that churches have met such people and have ignored them, or that they don't know about such people. In either case, the response evidences a lack of caring. It causes me great concern to witness such blindness at every level. My concern is that this oversight is symptomatic of a pervasive lack of caring. This lack of caring is evidenced at every level of Christian education and that is disgraceful.

I have heard dozens of excuses from money, to training, to "I just didn't know" and all them are inexcusable. So God would tell us that those are all good reasons and would excuse us from caring? No, do something and find out what it would cost. Do something and learn in the process if you don't have training. Do something and find out how the life experience of people impacted with disability is the same or different as those not affected. Once again, if you really "just didn't know" what does that tell you about the religious education you have received at every level...I should probably include sermons in this discussion.

Additionally, every day we visit bathrooms that are handicapped accessible, or walk past handicapped parking spaces. Who are all theses handicapped parking spaces and bathrooms for? Are they for figments of our imagination? Has the government lost its mind, or is it actually true that 20% of the population is disabled? No, things have to change in the Christian church. Christian education needs to become caring and particularly aware of the needs of the devalued members of the community.

May God forgive us for our practices at every level of so called "Christian" Education, from Sunday School to Seminary. No excuses. Just start doing what is right and teach about the caring that is or at least should be a critical aspect of the Christian faith. Otherwise we perpetuate a system that reproduces numb Christians with a significant flaw.

McNair

Leading worship for adults with cognitive disabilities

Eric Boyles is a friend of mine who helped me to see worship with adults with cognitive disabilities in a very different light. He is able to elicit participation in worship (or at least showed me that such participation is just below the surface with adults with cognitive disabilities). Eric would come to our Light and Power company group, and lead music/worship once per month. I remember one week, as he was beginning, just playing some chords and plucking strings on his guitar, he said something to the effect, "I feel like there are people who would like to give praise to God. If you would like to give praise to God, please do so." Very spontaneously, people across the group, representing all ability levels, would chime out. "I praise God for my family" "Thank you God for my job" "I praise God for Light and Power class" this went on for perhaps 10 minutes with Eric doing little more than asking the question, setting the occasion for the release of praise. I will admit that I had underestimated the folks in thinking that they would or perhaps could do such a thing.

At other times, Eric would elicit other forms of expression from the group, be it singing or suggesting a song, or prayer, or praise, or just being silent as he would lead. I learned a great deal about the level of participation one might facilitate with little more than praying and then setting the opportunity. Eric's appearance seemed to set the occasion for a deeper level of worship among those with disabilities. As he would express, he just tries to get out of the way and let God's spirit work.

He and I have also had interesting discussions about how persons with cognitive disabilities can set the example of freedom in worship. People with "social skill deficits" by definition, are largely unaware or unconcerned about how they appear to others. This is a real benefit when it comes to worship. If they want to raise their hands, or clap, or dance, or whatever, they feel the freedom to do so. Their presence opens things up a bit in terms of stretching the envelope. They are an example to the congregation.

Eric has also described to me how they are unimpressed with him as a worship leader. Perhaps a better way of stating that is that they are equally impressed with whoever is the leader. I am reminded of my grandmother, who when I told her that I received my Ph.D. said, "That's nice. I hope that makes you happy." She didn't demean me but she wasn't overly impressed. If people are not overly impressed with me as a leader, they once again facilitate my being able to get out of the way and allow God's spirit to shine through.

I asked Eric to write a song to go along with our current series of lessons on the book of Psalms, based upon the sit, stand, walk statement of Psalms 1.
See http://jeffmcnair.com/Biblelessons/Psalmslessons.htm
He wrote the wonderful song, "Sit, stand, walk" which you can see him performing in the video at the right. It is once again a perfect example of treating adults in a manner that is not juvenile. The song is simple, but at the same time profound. It is also a prayer which people can pray by learning to sing the words.

I will be giving Eric some questions to address in the near future, but if you have any questions about leading worship with adults with cognitive disabilities, I would invite you to ask them as well. You can either email them to me at mail@jeffmcnair.com or you can use the comment funciton of the blog to ask the question.

Be watching for more on this issue, and for more input from Eric who has thought a great deal about these issues.

McNair
(fcbu)

The church of the "big butt"

There is a friend of mine, a friend with cognitive disabilities who regularly will go up to our pastor, shake his hand, and say, "I love this church!" Our senior pastor as well as any other pastors he has commented to have shared with me that they love hearing that comment. That is, not "I love this church, but..." but just, "I love this church!" Now most of us would probably qualify as members of the former of the two statements. We love our church, but we are critical of this or that. We love our church but we wish this or that would be different. Our buts add up into a large butt. We even might demean the unqualified love of our church by our disabled friends, by saying "Yeah, he has a cognitive disability. He doesn't understand the nuances of what his statement means. He isn' t really saying the loves EVERYTHING about the church, he just doesn't have the cognitive ability to differentiate." We, however, with our normal intellect would not be demeaned when we say, that we love the church except for the, music, style of biblical interpretation, noise, type of donuts, and so on and so on. You see, we arethe normal ones. It is normal to be the church member with the big butt. It is NOT normal to be the church member who says, "I love my church" without qualification.

But if you think through it, who would be the one who might have the actual reason to qualify his love for the church with buts? Would it be the university professor with a good income and respected position in the church? Or would it be the member of the devalued class, living in poverty, whom the church has largely ignored for centuries?

To use the metaphor of the big butt, if a person has a big butt, it implies that they have something they would be better off not having. That is if they excercise and eat right, chances are they would shed their big butt. A big butt may imply laziness or self-centeredness. Now if you have a big butt, I apologize if this offends you, but stick with me. Our qualification of love for the church with a but statement, says more about us than it does about the church. We are quick to nit pick and do nothing. We are unwilling to have the involvement that would exercise our faith perhaps causing us to loose our big but.

In my experience, it is those who are most familiar with the foibles of the church who love it. You could read this blog and accuse me of being a hypocrite in this area. But I will tell you that I love the church without qualification. It is God's chosen body for His Son, Jesus Christ. It is because I love the church that I want to see it become all it could be. It is my hope that buts in this blog are not, "I love the church, but I hate this..." Rather that "I love the church and it can become this..." Let me say that if the church made no changes whatsoever to what it is now doing, it would still be the best option for persons with disabilities. If only because their presence would wake it up to all it can and will be. It is like dormant seeds in the soil that just need water. Because it is God's choice, God's way of doing things, it is and always be the best option. Will it fail? Absolutely it will fail. I still love the church.

McNair
(fcbu)

Curriculum and adults with severe cognitive disabilities

I had a discussion with a leader in disability ministry the other day.  We were discussing what curricula might look like for an adult with a severe cognitive disability.  The person I spoke with indicated that they will use stuffed animals that the adults can manipulate while they are teaching about the story of Noah's Ark.  As I listened, it struck me that the approach was misguided on many levels.  Please understand that I bless that person and the work that they are doing, however, I also understand, I think, alternative means to work with that particular population: adults with severe cognitive disabilities.  Lets consider a few aspects where I believe this approach is wrong.

First, in all of our interactions with people with disabilities, we should treat them in an age appropriate manner.  If we are not age appropriate, we stigmatize people.  Adults treated as children are trivialized and dismissed.  So the first problem is age appropriateness.  When classes for adults without disabilities start using stuffed animals to teach Bible stories, or have adults color pictures, or do whatever else children do but adults don't typically do, when that happens, then I will consider doing that with adults with cognitive disabilities.

Second is the whole story of Noah's Ark.  What relevance could this story possibly have to the life of adults with cognitive disabilities?  These are people who struggle with the most basic of understanding.  Yet we will teach them about Noah, and assume they understand that that is the name of a man who lived a couple of thousand years ago.  The assumptions here, boggle the mind.  The assumption is that they will generalize the fact that these little stuffed soft things represent real live animals, when we know that a characteristic of people with severe disabilities is that they cannot generalize such information.  Need I go on?  The animals enter in groups of two...what is a two?  They are male and female...what is male and female?  The world was destroyed by a flood...what is a flood?  Because of the sin in the world...what is a world and what is sin?  The disconnection between the story and the life and understanding of a person with a disability is staggering.  Yet we dutifully teach the story of the creation, or Noah, or whatever.  I remember being in a Sunday school class one time where the lesson was about how David could have killed Saul but didn't, just cutting off a piece of his robe.  Or a lesson on the fact that God is eternal.  I can barely understand that one myself.  That lesson was particularly memorable as when the teacher said "God is eternal" a dear woman with down's syndrome turned to me and said, "What is this God is a turtle stuff?"

When I called the teacher on these things, the response was that "The Holy Spirit will fill in the gaps."  So I am to teach with my plan being that God will do a miracle every time because I am unwilling to teach in a way that works with the people at the level they are on.  That I should plan for a miracle for their to be any understanding for a severely cognitively disabled person in a Sunday school class.

But you might say, "Well what would you teach about then?"

I am not sure I would deliver any specific content, knowledge to people with severe cognitive disabilities.  I think that is part of the problem with the way we do most things at church.  Everything is knowledge based.  So when it is time to teach the severely disabled people, we have to be knowledge based.  Well that is pretty silly to my way of thinking.  Maybe I would tell them that Jesus loves you.  They may not understand who Jesus is, but to teach a person that someone loves them is a good thing.  If a person could only repeat the phrase "Jesus loves you" would be a good lesson to learn.  But as I said, I might not even do that.  My current efforts in a church program that includes people with severe cognitive disabilities, is to let them know that I love them.  That I am glad to see them.  That I call them my friend.  Then we eat a lot of good food together, and hug each other and enjoy a few minutes together.  They learn that they are a part of something where they are loved and they are welcomed. 

One man in our group (I have mentioned him elsewhere in this blog) is a great guy named Eddie.  Because I know Eddie, I know the few words he speaks.  When we are together, I use them with him.  So he might initiate a conversation with me, or I with him using his words.  So I say to him "Christmas" and he replies "Christmas."  He then says "Ho ho ho" making a characteristic gesture, which I repeat.  He says "Toys" to which I respond "Toys, you like cars." He responds, "Cars."  He is with someone who is listening to him and he is listening to me.  It is funny because as I am teaching a lesson to a group of perhaps 70 people, he will leave his seat and come up to me, and we engage in this conversation.  He has complete access to me at any time, and we talk about the things that are important to him.  In addition, although the topic of our conversation is somewhat juvenile, our conversation is not juvenile.  If you couldn't hear what we were talking about, you would just think we are a couple of old friends having a good time talking together.  It is interesting that recently he has infused the word "Bible" into his conversation so I am on the lookout for a good picture Bible.  He has noticed that people open a book when we are in our group, and they call it a Bible.  He wants one too, so he will get one.  But not because I plan to impart any Biblical knowledge to him other than that "Jesus loves you" and that "I love you." 

I still look to God's Holy Spirit to help, but the assistance is that Eddie will know that I love him and that Jesus loves him.  Not that he will be able to engage in Biblical interpretation and application.

McNair