Great Expectations

I am often in situations where people with intellectual disabilities and those without who are their teachers, their care providers, their family members are together. Sometimes it is a theraputic or educational situation and other times just typical life situations. It also seems, that those with the disability perform, to a certain extent, in accordance with the expectations of those they are with. So...

If they are treated as a child, they act as a child.
If they are treated as an adult, they act like an adult.

If they are treated as if they can't learn anything, they don't learn anything.
If they are treated with the expectation that they will learn, they do learn.

If they are treated as people who are just intellectually disabled, they act as such.
If they are treated as people who think, have opinions and are capable of thinking deeply they do.

I make concerted efforts, when I am instructing people who have intellectual disabilities, to try to stretch them, particularly if I am talking about spiritual things. I am always impressed how they will raise to the level of the discussion. They will often try to take what I am saying and translate it into a direct application to their lives. "So you are saying that I shouldn't listen when somebody tells me to ..." they will say. One gal I know who has down's syndrome, will pause after you ask her a question, and often give profound insights. Too often, however, she is not given the opportunity to do so because the people around her think her pause a lack of understanding, and their limited expectations cause them to be impatient.

I believe I have shared this here before, but I have a friend who has severe intellectual disabilities, lets call him Fred. Fred would try to get my attention by nagging me with a question, the same question over and over again. Finally, one day, he asked me for a dollar. That got me to stop and pay attention to him for a minute. He learned that he could get me to stop by asking me for a dollar. Well many dollars have changed hands over the years, but at some point I stopped and began to have a conversation with him. I expected him to be able to converse with me on a variety of topics. At first our discussions revolved around his original repetitive question and asking for a dollar, but grew to discussion of his desire to marry his teacher, and his brother who lives in Hawaii, and his interest in baseball, and his favorite foods and so forth. When I treated him as a real human being who would communicate with me on a variety of topics, he rose to the occasion. Had I continued in my interactions with him where I basically ignored him, he would have remained something quite less than what he was capable of.

So I have learned to try hard to raise my expectations of people, independent of their level of disability. Too often their low performance is due to what I do as the person who is in control of the social situation. It is the result of mistaken notions of the limitation of the person with disabilities.

McNair

Disability Studies MA mentioned in Christianity Today

In an editorial entitled Surprised by disability by Al Hsu Christianity Today magazine makes mention of the new, entirely online, MA degree in Disability Studies at California Baptist University. It is exciting for those of us who have worked to develop this degree to have it noted in Christianity Today.

If you are interested in this online degree program, you can find more information about it at http://calbaptist.edu/disabilitystudies and/or you can email me, Jeff McNair at jmcnair@calbaptist.edu

We are accepting students to the program for January of 2009, just 3 months away, so contact me and we can get you an application!

God bless!
McNair

Us becoming like Them

I have had a bit of a revelation in the last few weeks. I finished writing an article that has a great title. It is called, "The indispensable nature of persons with intellectual disabilities to the church." It should be coming out in the next few months in the Journal of Religion, Disability and Health. Anyway, as often happens when you submit an article, it was sent back to me with some questions, and suggestions for changes both of which need to be addressed if the article is to be published.

As I was working through the revisions, an idea hit me. In an integrated setting where people with and without intellectual disabilities are together, you obviously have two different groups in interaction with each other: those with intellectual disabilities and those without intellectual disabilities. Now those without intellectual disabilities have the ability to learn social skills, and to pretty much reflect what might be called nondisabled society. In contrast, those with intellectual disabilities may not understand social skills and therefore do not reflect nondisabled society. So for example, research indicates that people with disabilities loose their jobs most frequently because of minor social skill deficits. But I also note that my friends with ID have a very different perspective on disability. They may not see themselves as disabled, and may not regard others with disabilities like their own or even more severe, as disabled. I find that they typically just see others as people.

I have one friend with ID who says that a person with a disability is someone who can't get along with other people and gets into fights. So when I ask him whether he knows someone who has a disability, even though I know that he knows people who use wheelchairs or walkers and have severe ID to the point of being nonverbal, he comes back to his definition and tries to think of someone who is difficult to get along with.

But getting back to my point, as I am spending time with friends with intellectual disabilty, I find that I have the ability to change in a variety of ways while they don't always have the ability to change. So, in order for there to be social interactions with them, I have to change. Actually (and this was my revelation), I think that I become more like them, I become more like my intellectually disabled friends. Specifically,

• I don't worry so much about social skills and their are few things someone might do, socially, that would shock or alarm me. I become like them in that way.
• I begin to see people as people whether or not they have a disability. They are not characterized in my mind as my friends and my disabled friends. I become like them in that way.
• They are very forgiving of others who are unkind to them. Hopefully I become like them in that way.
• I will also say, unapologetically, that they are more loving toward others than I often am. Hopefully I become like them in that way.

These and other changes are not forced on me in any kind of willful acts on their part. It just kind of becomes the rules of the game if I am going to be able to interact with them. So they change me/I become more like them. In order for the enviornment to soften to include them, there is a level at which the enviornment becomes like them.

In the words of the title of my article, the indispensable nature is at least partly the positive ways that I become like them as a result of being with them.

McNair

How far have we come?

I recently received an article from my mother, a resident of Minnesota, that was entitled State facility improperly handcuffed retarded residents.  The article tells of persons with intellectual disabilities being handcuffed for such offenses as, "touching a pizza box, spitting and going outside without a coat."  The article also relates, "The staff said restraints were the only way to manage the often-difficult residents who are temporarily committed tot he 48 bed facility by the courts."  

This story apparently has come to light because of Roberta Opheim.  The article says "she took the unusual step of publicly chastising the facility to reduce the chances of such abuses from occurring again."  Thanks be to Ms. Opheim.  I am confident she received political heat for her decision.

The article also says, "When family members and guardians complained or demanded that restraints not be used, the staff threatened retaliation by limiting visiting times and withholding information, the report said."  Rick Amado is quoted as saying, the staff members "are not bad people...They can become frustrated, they cannot allow one resident to hurt another."  To me, those two characterizations do not go together.  Staff who threaten retaliation when families and guardians want justice are bad people.

The article goes on to say that "Opheim noted that budget cuts in recent years have sharply reduced the amount of resources for staff training..."  I see the results of limited staff training myself, although not as severe.  For example, a local group home took a bunch of intellectually disabled adults on a walk through their neighborhood in their pajamas.  Why?  Because it was 6pm, the residents were already in their pj's and needed to get out a bit.  It would be too difficult to change them back into street clothing for the walk.  This is the kind of thinking that occurs among people who often work with individuals with disabilities.  I do not mean to equate being handcuffed with being paraded around the community in your pj's but the observation is that both have received poor training.  Should a man be walking around the community by himself in his pj's he might experience repercussions for his behavior.  However, I am supposed to participate if those who are "in charge" of me parade me around.

I would like to say that these types of things do not occur in the United States, but I know they do.  Typically they are hidden which is why Ms. Opheim should be credited for bringing them to light.  Chances her efforts will cause others to examine the practices they are aware of and bring them to light.

McNair

A real life metaphor

This past week in church, my pastor, Dr. Gary Inrig, related the story of a man who saved his son who had fallen into a septic tank.  The story might not typically get someone's notice except for the fact that the adult son who fell into the septic tank was a man with down's syndrome and the man who saved his son, sacrificed his own life so that his son could live (see Washington Post story here).  Thomas Vander Woude apparently held his son's head above the sewage water by somehow holding him on his shoulders or in some other way holding him up, while sacrificing his own life in the process.  

My pastor used this story as a beautiful illustration of Christ coming to Earth (diving into a septic tank) in order to save those who were there, and ultimately sacrificing His own life to save ours.  I will allow you to fill in the blanks relative to other aspects of the metaphor.  But I was thinking more about the value this father put on the life of his son with down's syndrome.

At the moment it is reported that 90% of children who are prenatally diagnosed as having down's syndrome are aborted.  Without getting political, that is one reason that Gov. Sarah Palin's decision to give birth to her son with down's syndrome is actually quite remarkable.  By that act, she places herself among the 10% of other women who were in that position and chose life.

But even more interesting, more worthy of consideration is that here is a man who after 20 years with a son with down's syndrome saw his son's life as important enough that he would sacrifice his own life so that his son could live.  It is a very powerful example to people who would make "decisions" about the lives of others, when they know little or nothing about those lives.  I am not just talking about parents, but more those in the medical profession and those in pro-choice organizations both of whom probably have never had a cup of coffee with a person with down's syndrome, or watched a ball game with someone to get to know them as persons.  However, doctors may be quick to advocate for the prevention of their lives through abortion.  If people really want to understand what disability is, they need to get with people with disabilities themselves as well as with people like parents and friends who really know them well.

McNair

Teacher interactions with parents of children with disabilities

I recently had the opportunity to do an inservice for a local public school. The school called me to speak to the teachers who were feeling discouraged and beaten up by parents of their students, largely early elementary age, who had disabilities. As I was reflecting on what I would say to the teachers, my mind went to Micah 6:8 one my most favorite verses. The school was not a Christian school, but I told them they invited a Christian college professor to speak to them, and I was going to base my comments on a Bible verse.

"In your interactions with parents," I said, "your standard should be to do justly, love mercy, and walk humbly." Let me repeat a bit of that advice here.

As a teacher you need to do justly, which although it might sound easy, is not. I always tell the new teachers that I work with that you need to think about what you are willing to loose your job over. I had dinner with some friends last night, who are also professionals in special education who told me that they know of a local district who literally have a staff person who's main responsibility is to not give parents what they are after in terms of programming for their children. I was speaking to a program specialist, a person who supervises and assists special education teachers, and an old student of mine, who told me that in her district, the have a special program which is state of the art for children with autism. However, you cannot get your child those services unless you threaten to go to "fair hearing" which is kind of like taking the negotiations for a child with disabilities' educational program into the legal system. In these and other cases, school districts are frustrating the doing of justice. You don't need to talk to many parents to find out how difficult it is to get the services you are supposed to get, from the state. You have to fight. As a teacher, you should not be on the side of those who frustrate parents. You should not be only and always on the side of parents. You need to be on the side of justice as best as you can understand it. And yes, there are things worth losing your job over.



As a teacher you should also love mercy. Parents of children with disabilities are "wounded" in similar ways to which persons with disabilities are wounded. See this blog entry for more on wounding. Because people are wounded, they can be sensitive, hostile, aggressive. However, when I approach a situation where I remember that I am the professional in the situation, and I remember that those with whom I am interacting are wounded, and I know what I know about issues of justice described above it should cause mercy to well up in me. I approach people differently when I realize they are in the need of mercy.

Finally, I need to walk humbly. As teacher, as a professional, my problem may be that I think I know more than I actually do. I can be too quick to minimize parent input, or vilify parents, or just do a lot of blaming. But more than just about anything, as a teacher I need to walk humbly. I need to recognize my limitations, recognize the exceeding importance of parents and family in the life of a child with a disaiblity. I need to recognize that I represent the State, and as such a representative, I am not always on the just side of the argument about services. I have sat in on IEP meetings where haughty, self-impressed professionals bully parents. I cannot be one of those people. I need to be humble in my interactions with all people, but in particular as a professional in interactions with parents, children and families.

McNair

Typical experiences

In his discussion of the wounding experienced by persons with disabilities, Dr. Wolf Wolfensberger relates that often, particularly people with intellectual disabilities do not have the experiences typical of people in their culture.  So in the US, for example, I have known adults with intellectual disabilities who had never been to a restaurant before.  I actually had the delight of taking a few friends to their first restaurant when I found they had  never been to one.  Being in Southern California, we have found that many people have never been to the beach, or up in the snow when the mountains are white in the Winter.  But recently in our group at church, I have discovered a few other examples.

People enjoy hearing about other people's trips to exotic places.  Most persons with intellectual disabilities don't get to hear about people living or traveling to Africa, for example, because they do not have people who are making such travels in their social networks.  Therefore the simple experience of someone going on a trip, coming home, and then sharing pictures is something that may have never experienced.  

This past week, the women of our group sponsored a wedding shower for another woman who participates in our group.  I wonder how many wedding showers the typical adult with intellectual disabilities participates in in her lifetime?  Kathi told me that it was a delightful time where gifts were carefully selected and presented with pride and anticipation, and received with sincere thanks.  What a wonderful memory for the future bride and all those who participated in her shower.  The men of the group also teased about the shower as a "chick" occasion as men do which is actually a part of the fun of whole experience.

How wonderful to be able to enrich lives of people who through no fault of their own miss out on typical things that are part of the lives of those who do not have an intellectual disability.  

McNair

Softening the environment

For many years, I have thought that a critical factor in the integration of persons with intellectual disabilities into the community is the "softening of the environment" toward those individuals. That is, the environment needs to

• soften in its social skill demands,
• be more open to differences in people to some extent not even really seeing disability,
• needs to be more friendly and more loving,
• needs to become less indivualistic and more open to interdependence among people.

Well it seems that what we are actually saying when we say that the enviornment needs to be softened, is that the enviornment needs to become more like people with intellectual disabilities who

• do not make high social skill demands of others,
• are more open to differences in people to the point of not even seeing disability,
• tend to be friendly and loving,
• and perhaps due to their disability are less independent and more dependent or interdependent.

In considering relationships with persons, particularly adults with intellectual disabilities, because they are often unable to change, to improve in areas such as social skills, those without intellectual disabilities have the option to soften, ultimately accepting others in spite of their "shortcomings" or rejecting them. The accepting, the softening, it seems to me, is actually me becoming more like them. As I grow as a human being, I reflect many of the characteristics I observe in people with intellectual disabilities who are around me. I become more like them as I begin to understand that we are really all the same. My resistance to change, my reisistance to softening illustrates the degree to which I do not believe people are all the same. My embracing and insistance on social standards (I am not talking about standards in terms of evil) when people are unable to meet those standards (think social skills, for example) hardens me and makes me brittle such that I can never really see others with intellectual disabilities as the same as me.

McNair

Compartmentalizing disability

I am a person who became interested in persons with disabilities, particularly intellectual disabilities because of the way they drew me in, accepted and loved me when I was a college freshman.  As a result of that group of adults back in 1974 with whom I just played basketball, or soccer or whatever else they wanted to do when we met on Friday nights, I have now spent over 30 years working to educate people with similar disabilities, working to educate those who educate them, and working to see they are full members of the community including the local Christian church.  I have no family members who are disabled so that my involvement with people with disabilities has been a choice on my part.  In contrast, many people that I know have had the life experience of disability thrust upon them by virtue of having a disability themselves or being the family member of a person with a disability.

But even in the best of situations, because my involvement is a choice, it can result in a kind of compartmentalizing of disability.  I have the luxury of compartmentalizing my life, such that I am able to include or not include with people with disabilities in my life.  In that regard, I am probably a part of the majority of people.  I started to think about that idea of compartmentalizing disability.

For myself, I visit friends at a group home once per week. I involve myself with people at church every Sunday and at times when there are other events (which is pretty often). But it occurred to me that my "disabled life" occurs largely on Wednesdays and Sundays for about 7 hours a week. Often I talk with friends on the phone and other times we meet together just as friends do. With effort I get together for coffee once a month with friends, sometimes initiated by me and sometimes initiated by my friends, and I try to help people with problems as they arise. I understand that many people, particularly parents and people with disabilities themselves cannot compartmentalize which is a huge difference between them and myself.  I can become unavailable if I want to for some reason, they must always be available.  Groups attempt to provide respite care for parents such that they can explore other aspects of their lives, but even when they are benefiting from respite, they are still "on call" such that they are only physically absent for a brief while.

The question I have for myself is, how can I reduce the compartmentalization of my life in relation to people with disability?  I have tried to make myself available in the midst of a busy work schedule and phone calls help to blend aspects of my life together.  But I struggle with how, short of adopting a person with a disability, or having some with disability living in my home, I can live a more integrated life.  I am not foolish enough to think or imply that life with disability is in any way easy, although I have learned that people do become accustomed, become used to their lives as they are lived.

I also wonder, at times, whether life with people who are intellectually disabled, when it is a choice because they are disabled, is little more than philanthropy? That implies a one way street in the definition of inclusiveness. I think that perception is the reason why many efforts to facilitate inclusive programs fail.  Those without disability may see it as all giving on their part.  They don't see the involvement as mutually beneficial.  Until they do, efforts at inclusion are destined to live or die on the basis of philanthropy.

For myself, my efforts to break down the compartmentalization of disability in my own life are in part based upon philanthropy, I must admit, however I also have other motivations.  I meet with my friends because they are truly my friends.  I laugh with all of my friends, I am interested in what they are doing, I enjoy being with them, they enjoy being with me.  When I am away from all of my friends I think about them.  When I am away from friends I worry about issues I know they are facing in their lives.  I try to defend them when I perceive them being threatened.  I guess I recognize the impact all of my friends have made on my life and that is the reason why I don't want to compartmentalize them, but want our lives to blend.  I freely commit myself to relationship like I do to any relationship and that commitment makes demands on me which I also freely embrace.  At least that is what I hope to attain.  It results in a blurring of the lines between characteristics of people.  I see this blurring through the eyes of my intellectually disabled friends in the way they see people with and without disabilities and it is a very refreshing characteristic that I hope to learn.

McNair

The moral "where with all"

While in Cape Town at the IASSID conference, I attended two presentation relative to personhood of people with disabilities, in particular intellectual disabilities. One presenter quoted Dr. Hans Reinders using the phrase "precarious personhood." It is a good phrase, pointing to the tenuous nature of the lives of many people around the world.

A second presenter used the phrase "traditional moral philosophy" as kind of the point of appeal for personhood, implying that traditional moral philosophy will bring us to the awakening we need to love our brothers and sisters in spite of their perceived, negative, personal characteristics. I felt like she was Peter Pan asking me to throw myself out the window because she says I can fly. I raised the question, "If just about everywhere in the world, pretty much forever, people have been excluded on the basis of their disability, to what traditional moral philosophy are you appealing? Our traditions have failed us at every turn. Our secular and at times religiously informed moral values have been traditionally unhelpful and problematic. To imply otherwise is to evidence an intellectual disability. You are therefore appealing to a morality that is basically not present." Strangely, she agreed.

Such morality is not present in the majority of parents until a child with a disability is born to them and even then not always so. It is not present in schools where special education teachers force inclusion on children but do not live lives inclusive of their own peers with intellectual disabilities. Our only hope is to appeal to settings where the morality we desire is present although perhaps dormant in many situations like the Christian church. We have the opportunity to lead the way in the development of values that will value people with disabilities. In many ways it is not natural for societies to have such values...they must be taught. Or better yet, they must be modeled by us for society because we as Christians can at times talk a good game, but can't back it up. At least not yet, and for sure not universally. Pockets of brilliance do not an argument make, however, but as the pockets grow, more will want to reflect what they see.

McNair

IASSID Religion and Spirituality Division

One of the reasons for my trip to South Africa, was to assist in the development of a special interest group of IASSID (International Association for the Scientific Study of Intellectual Disability).  Led by Bill Gaventa, about 20 of us met to discuss the possibility of this group.  We had people from Tanzania, South Africa, United States, Belgium, United Kingdom, Finland, Australia and the Netherlands (perhaps more!).  It was a great first meeting where we had the opportunity to meet and hear about what others around the world were involved in relative to spirituality. 

There was also a religion and spirituality presentation track where 6 papers were delivered, 4 from the US, one from Netherlands and one from UK.  I presented a paper on Christian social constructions of disability, and one on The indispensable nature of persons with intellectual disabilities to the church.  The sessions were well attended and the presentations well received with lively questions and answers afterwards.  It was interesting to hear reactions to the levels of church attendance in the US.  I reported the Princeton Religion Research figures of about 40% attending church in the last seven days, and research about adults with intellectual disabilities attending at about a 50% rate which comes from several research studies.  People were very surprised at the attendance figures, particularly people from Australia and the UK where church attendance is apparently very low.

Unfortunately, there were not a lot of people who represented religious perspectives other than Christianity, so we didn't have the benefit of hearing from those folks.  Hopefully that will change in the future.

Should you be interested in becoming a part of this new international group, go to the IASSID website, register as a member, and then email me and I can tell you how to proceed.

McNair

"Forgiveness"

At the IASSID conference in South Africa, I attended a session by a researcher from the UK.  The woman was doing research on attitudes towards children with disabilities, and particularly toward their mothers in some of the more remote, tribal areas of Africa.  Among the tribe she studied, there is the perception that a woman has a child with a disability because of something wrong she has done.  She has "sinned" in some way and the result is that the spirits have given her a child with a disability as a punishment.  The researchers, recognizing how important the relationship is between mother and child in the development of children with intellectual disabilities, wondered whether there could be a way within the tribal system that the perceived "sin" of the mother could be "forgiven" such that a better relationship might be fostered with the child and with the community for that matter.  They facilitated mothers going through rituals with the tribal leaders/healers that cost lots of money and took many months, but in the end, the mothers were "forgiven" of their supposed "sin" that led to the birth of their child.  This ritual resulted, according to the researchers, in better relationships between mother and child as the mother no longer felt the disdain of the society (she was "forgiven") nor her own guilt for something that she had been taught that she must have done (but probably had little idea of what it might be).

Lest you laugh off this account as you look at it through your western eyes, women, families in the West, in the US for goodness sakes often face the same kinds of perceptions as was evidenced in tribal Africa.  Research indicates that families, in particular mothers, will question God at the birth of a child with a disability wondering "What did I do to deserve this?"  The fact that this question is even typically in their mindset illustrates that it is a part of how our society thinks about disability and the birth of a child with a disability.  Somehow this social construction seems somewhat universal.  Unfortunately, it has at times also been reinforced by various societal groups, including to a greater or lesser extant, Christian churches.  Because this notion is such a basic part of our psyche, and because the Bible does not support such a notion, we as Christians must go out of our way to fight such an understanding of disability.  To paraphrase a colleague of mine, Dr. Jeff Mooney,  if we really had a good understanding of what sin is, and sin truly was the cause of disability, then all of our children should be disabled.

There is a ministry of mercy that the church and Christians can play in the lives of families, particularly mothers and fathers of children with disabilities.  That is, that as the opportunity arises we refute claims about a parent's sin being the reason for a disability.  We don't provide some silly, syrupy notion of God looking down and choosing families to have a disabled child, however, we do support that disability is in some way a part of God's plan for human beings.  The child with down's syndrome is not someone who somehow escaped God's notice and was born with an extra chromosome.  In many ways, such children are part of God's plan for people. 

Now obviously there are things a parent, particularly a mother can do, like drink excessively during pregnancy, that can lead to a disability in their child.  What I am talking about, however, is the birth of a child with down's syndrome, for example and other similar disabilities.  Not that we should criticize the mother of a child with fetal alcohol syndrome, but rather that the healing process in that mother's life is very different from that of a mother of a child with down's syndrome, for example.

Because disability is or has taken on such a negative perception, people assume there must be some form of evil behind it, and wrongly and unfortunately, the evil is usually placed a the feet of the mother.  It is interesting to note, for example, that when autism was first described, its cause was said to be due to "icebox parents."  Once again, it was believed that it was unloving parents who had children with autism.  Nothing could be further from the truth, however, because of the notion once again of sin linked with disability, even 1940's researchers would make the connection between the two.

Another of the researchers at the IASSID conference was from Iceland.  Interestingly, she noted that in Iceland the divorce rate among parents of children with disabilities was LESS than that of couples who did not have a disabled child.  This is quite a statistic.  With supports, parents can see the birth of a child with a disability in a totally different manner.  Supports can be provided that may actually make the family unit stronger rather than weaker.  I suspect a lot of this strength is related to the manner in which disability is perceived, or people are taught over time to perceive the birth of a child with a disability.

That is my prayer for the Christian church.  I pray for the day that parents of children with disabilities are drawn to the church because of the support they will feel there.  That the response to the birth of a child with a disability is not "I must have sinned" but "I need to go to a church where they will love, understand and support me."  That people, Christian or otherwise, would intrinsically link disability and church.  If we were really supporting people with disabilities and their families, the community witness would be irrefutable.  It would also go a long way in refuting the socially constructed link between disability and sin.

McNair

South Africa: So what do you do?

After visiting Cape Town, South Africa, I have been trying to integrate and understand many of the experiences I had there. I think the time could be reflected upon in reference to 1) the incredible natural beauty of the place, 2) the wonderful IASSID conference at which I met dozens of people working for persons with intellectual disabilities from many countries, and made some new friends, I think, and 3) my eye opening interactions with average people, as I spent many hours just walking around the streets of Cape Town, talking to merchants, security guards, cab drivers and the many people who were begging on the street. It was through these interactions that I got to know many black Africans living there. To a person, they were friendly and a delight to talk to. I found I could get them to open up a bit (although it didn't take much effort to get them to open up) if I would ask them where they were originally from, as Cape Town seems to be a kind of magnet for people from all over Africa who are looking for a better life. As a backdrop, these experiences were then also impacted by the reading each evening of Nelson Mandella's Long Walk to Freedom, which is basically his autobiography, and an insight into apartheid in 20th century South Africa and its ultimate reform. It was interesting to read that entire book while I was in South Africa. I want to comment on it in a separate entry.

My time with average, South African citizens caused me to write a poem that I called, So what do you do? that I provide at this link. Each of the stanzas relates to specific or general incidents I had, interacting with specific people. I am not a poet, but it has been helpful to write it as a way of trying to comprehend and make sense of the experiences you will see related in the poem. I will tell you that the trip kinda "rocked my world" a bit.

More on disability issues forthcoming.

McNair

Hello from Cape Town!

Well, for the next week or so, I am in Cape Town South Africa at the International Association for the Scientific Study of Intellectual Disability. I am doing 3 presentations, 2 related to church and disability issues. I am also hoping to be involved in the start up of a division of the organization devoted to issues of church and disability. I can tell you that after 24 hours here, I have only seen one disabled man, who I gave my change to, walking on crutches. I am very excited to meet Africans and learn about disability here.

So, should you make a comment and I am a bit slow in posting it, please be patient. I will share more of my experiences here later.

McNair

Beginning traditions

While working on a brief article for the the American Association on Intellectual and Developmental Disability's Religion and Spirituality division newsletter, it occurred to me that we, as the Christian church in the world, are in the position of beginning traditions relative to the place of persons with disabilities within the church. To date, our traditions have been largely exclusive and ignoring as if there were few if any people with, for example, intellectual disabilities. However, as we begin to move into a new time of inclusive practices that will literally change many aspects of the way we do church, I think it is important to consider how we are informing the models we use which will ultimately become our traditions.

Will we move of on a direction where we totally segregate people with intellectual disabilities from the traditional church as if they were some pariah, claiming we are doing what is best for them? I hope not. If we do, people without disabilities will continue to grow up in churches without any experience with people with disabilities. The church will also largely remain unchanged rather than becoming all it might be by including essential parts (1 Corinthians 12:23).

Will we borrow our practices from the public schools, instutiting inclusion classes within the Sunday School program? I hope not. If we do, we are building programs with the same problems that the public schools face (one reason why some research indicates that only 10% of schools have inclusive classrooms in the US). In addition, we are following a knowledge based model, which may not only not be the best for those with intellectual disabilities, it may not be the best for any of us, children or adults. Social integration has largely NOT been the result of public school inclusion programs.

Will we borrow our practices from psychology, expanding the pastoral counseling role? I hope not. If we do we will perpetuate that people with disabilities have something wrong with them, when they are just perhaps not as typical (in terms of intellect, the manner in which they move about the community, or the way they perceive the world). There is a difference, in my mind, between having something WRONG and having something different. We as the church can lead the way in helping the world to see people as having differences not wrongs.

All this is to say, that Lord willing, we will be looking at the practices of the church in 100 years, and wonder how they got the way they are relative to persons with disabilities. I would advise the church to step back and look at the way they do all programs. How would the presence of persons with disabilities cause those programs to be different? Perhaps that is the way they should have been in the first place.

We can literally do just about anything, unrestrained, without limits in terms of the manner in which we will include those who have been excluded in the past. Lets dream big, go deep in prayer and come up with crazy solutions that have never been dared in the past. Lets think about the ideal situation and plan for that. I will admit that too often I have only dreamed as big as what I think I will be permitted to do by my church, or those in leadership over me. I have not pushed the envelope as I might. As a result, I fear that the traditions that I have been involved in developing within my church will be soon outdated. Not because I didn't have bigger dreams, but rather because I settled for what I would be permitted to do, not fighting for what I had dreamed.

McNair

Unencumbered by knowledge...

Kathi and I have been getting lots of emails about the new movie Tropic Thunder regarding comments made in the movie that demean persons with intellectual disabilities.  I suspect that the movie is easily missed, however, it is important to note that the jokes are jokes and comments that many people routinely make.  I don't think that the movie is leading the culture in this area, but more likely is reflecting the culture.  I am confident that many people have either heard or hear others referring to someone as a "retard" or "retarded" but perhaps have not given it much thought.  But such jokes are easy.  Another post on this weblog has addressed this issue along with the presence of a video of an amazing speech that I would refer you to.

Although I too am angered by the jokes, they are reflective of a larger problem of speaking about things about which they have no knowledge.  Back in May of 2004, I related on this blog the story of David Hyde Pierce, who played Niles on Cheers and Frazier the Cheers spinoff.  He was back then a spokesperson for alzheimers disease.  Back then I wrote the following.

By contrast, David Hyde Pierce (Niles Crane on the television program Frazier) has been a strong advocate for persons with alzheimer's disease. Recently, on the occasion of his birthday, there had been attacks on President Reagan by comedians regarding his alzheimers disease. Once again, without entering into the policital fray (I have no idea what Mr. Pierce's political affiliation is) he stated that there are two types of people who make jokes about others with alzheimers. First, there are those who have never experienced the disease. Wisely he says he hopes they will continue to be able to make such unkind jokes as that would imply they have never experienced the disease. May they live on without ever having to face the ongoing debilitation and humiliation of one you deeply love. Second, are those who make jokes to try to ease their own pain or the pain of their loved ones who do have the disease. 

Now, I wouldn't compare life with a person with alzheimer's disease with a life with a person with mental retardation/intellectual disabilities.  But the principle illustrated by Mr. Hyde Pierce's comments fits perfectly.  We will often make jokes about things that we don't understand.  

We will also make pronouncements, at times about things we know nothing about.  Recently the radio talk show host, Michael Savage, made ridiculous comments about autism and children with autism.  Savage is know for his inflammatory rhetoric about political matters, however, at least in this case, he ventured into areas about which he knows nothing.  I have had my heart broken by the insensitive people in grocery stores with their comments about controlling one's child as a parent struggles with their screaming child with autism.  They have no idea of the courage it sometimes takes for a parent to even take a child with autism to a grocery store, only to be criticized by onlookers, potentially empowered by comments from some radio personality who literally has no idea what he is talking about.  I have even heard the respected commentator, Michael Medved make comments about homeless mentally ill people and how they need to be in institutions.  I would easily embrace nearly any inconvenience they could cause me if it meant keeping them out of institutions that can be so horrible.  Are there people who could benefit from increased supervision of one kind or another?  Of course there are.  However, I might advocate for such supervision, not so they would be gotten out of my face, but more because of the manner in which the quality of their lives would be improved.  

But as a friend of mine, Dr. Bob Henderson once related to me, 

"Unencumbered by knowledge, they speak with great authority."

Once we do see the life of a person with intellectual disabilities or experience the love they give to others, we change our perspective.  Once we see the way in which they are discriminated against by society, we should change our perspective.  We begin to see these things as issues of social justice.  That is, jokes that perpetuate negative stereotypes about innocents are working against social justice for those who are the butt of such jokes.  So I think the issues are worthy of attending to and are worthy of bringing to the attention of those who make comments in the name of making someone laugh that demean others who are largely defenseless.  We literally demean people and support negative attitudes about people in the name of "fun".

I will not be seeing this movie or any movie that demeans persons with intellectual disabilities. I will not be viewing any television program that demeans persons with intellectual disabilities.

I will not be viewing any "entertainment" which uses the demeaning of persons with intellectual disabilities as a vehicle for laughter at their expense.

McNair

Choosing to be "smart"

I just finished reading the book Just Courage by Gary Haugen, founder of International Justice Mission.  He makes the following comments (pp. 118-119).

The fact is, when people choose to be brave instead of smart, their courage is generally so threatening to those who are smart rather than brave that they end up being maligned, not congratulated.  This is what the Bible says we can expect... So sometimes we have to decide: Are we going to love, or are we going to look smart?  Because loving the needy doesn't look smart.  And, sadly, in much of our culture this is one of our deepest fears: looking like a fool, naive, unsophisticated, a little too earnest, a looser... Generally, there is no wealth and very little regard in helping the needy... Sometimes the will of God is scary because he is asking us to choose between a life that looks successful and a life that is actually significant, between a life that wins the applause of our peers and a life that actually transforms lives through love.

That is often the issue with ministry to people with disabilities, particularly people with intellectual disabilities, the ones that I believe God has called me to serve.  How is is smart to be in ministry to people with mental retardation?  But Haugen asks the real question that is behind a lot of the disinterest in devalued people.  He says, "Are we going to love, or are we going to look smart?"  Is it smart to minister to people who aren't going to "get better."  What will people think of me if many of my friends are mentally handicapped?  Will I be the victim of some form of sympathy stigma?  I do run that risk.  It is true that "Generally, there is no wealth and very little regard in helping the needy."  To quote A League of Their Own, "Its supposed to be hard!  If it wasn't hard, everyone would do it."

But there is the potential that a life will be transformed through love.  The change to bet on is the change in your own life.  The love learned is the love you learn.  But they are not always easy lessons, so be prepared to be maligned.  

It is also interesting how people will dismiss themselves from work with the needy, particularly those who are needy with intellectual disabilities.  It is funny to most special educators, because the typical line you hear when you tell someone that you are a special ed teacher is that they say, "I don't have the patience for that."  Not, "I would like to learn the patience for that because I hear patience is involved" or even, "I have heard that you need to be patient.  Is that true?"

Significance of a life can be defined in a variety of ways.  But I think most often significance is determined on the basis of what you did for others.  And others, is a pretty open ended criteria.  People respect a person who gave their life for the needy.  So why aren't we doing more of that if that is what is remembered.  People will sometimes lament the time others spent trying to make money, but rarely the time spent with people.

McNair

disabilityministry.com

There are several of us who are interested in developing a web page that lists model programs serving persons with disabilities nationally. There may come a day when a service of technical assistance and evaluation could be offered to programs, but for the moment, we would just like to list programs sent to us.

We have purchased a website called http://disabilityministry.com where we hope to list these programs in addition to providing links to other websites and materials that would be useful to those in disability ministry.

Our hope is that you will forward the following information about your program to us for us to post on this new website. Please provide the following:

Church Name/Program Name
Website address
Email address to contact regarding the program
50 word program description

As we begin receiving this information, we will begin posting the list of programs. It is our hope that this website will be both an encouragement to churches to get into the disability ministry business, and also a place for people to find a ministry in their geographical area to attend or to visit as an example for them to start their own ministry. If you know of a ministry in your area, please ask them to send their information to us so we can list it.

Please send the above information to:
jeffmcnair@gmail.com
List as the "Subject" disabilityministry.com

Soon we will begin to list ministries there.

May God bless our efforts.
McNair

What to do? How to begin?

I recently had the opportunity to teach a portion of the second Joni and Friends certificate program to be offered by them at the Christian Institute on Disability at Agoura Hills, Ca. What a great group of folks participated in the training. There was one person, however, who felt very put off by the things I was saying. The feeling was that I was just attacking the church. We talked and I think the person came to understand my perspective, that I was trying to improve the church's outreach to persons with disabilities by challenging those in attendance who in many ways self-selected to be taught important principles about developing ministries. As I shared with the one person who was having difficulty, "If you are in your church, I will praise your efforts. However, as soon as you enter the training, it is my job to help you to mold your ministry into the best it can be, using what are (in my opinion) best practices. I will therefore be critical." There are things we can do which do represent best practices, and there are things we can do that are not best practices.

For example, if we develop curriculum that implies that adults with disabilities are children, we are wrong because they are not children, and we demean them by communicating to them that they are children. I have been teaching adults with intellectual disabilities in ministry settings for 30 years, and I have yet to find the need to develop cutesy stories that I would never use for adults who are not disabled in order to educate those who have intellectual disabilities. We teach from the same Bible that the nondisabled adults use, studying the same passages, generally, that they study.

Now I am circumspect in the things that I teach because I know of the intellectual capacity of my audience. So for example, I don't see the need to teach the story about how David had the opportunity to kill Saul but didn't (1 Samuel 24:4) because that is irrelevant to their lives. I can teach about doing unto others (Matthew 7:12) and therefore make the same point in a relevant way. The Psalms, for example, provide a wealth of information that is entirely relevant to anyone, including adults with intellectual disabilities. For example, this past week, I taught on Psalm 116, asking the group whether God had ever saved any of them from death (v3)? There were those in auto accidents, those in hospital for surgeries and so on and they easily made the connection that God had saved them. Or had any of them been delivered from tears, or God kept them from stumbling into sin (v8). We then moved to verse 13 that asks "How can I repay the Lord for his goodness to me?" The answer is in verse 14, "I will fulfill my vows to the Lord." We talked about the fact that we have given our lives to Jesus. So that means we will try to do what is right, to do what Jesus would want us to do.

I don't need stories that are juvenile in nature to convey these truths to my audience. I talk to them as adults and they respond to me to the degree they are able as adults. And people will rise to the occasion. This past Sunday, for example, we were having a time of prayer for people in our group. One of our members is a 4th year medical student at Loma Linda university. He mentioned how he had important upcoming exams and wanted someone to pray for him. One of our men, a regular attender, who I will tell you just to give you an idea of the level of his disability, spends his days in adult day care, immediately stood up and moved to the side of the medical student. He prayed, "God take care of him" ending with a loud "AMEN." He has learned how to pray for others who he is able to perceive are in need. He has been treated as an adult and has now developed the ability to treat others as adults.

But getting back to the initial point, we need to celebrate what we are already doing, but also improve what we are already doing. There are people out there who have thought deeply, have researched, have years of experience that we can benefit from. Yes there are those with years of doing something which may not be the best of practices. Hopefully God will provide the opportunity for assistance to those programs as the Christian church grows and develops in areas related to disability ministry. There is so much room for thought in this area.

But as stated above, the point is to begin and to even do things wrongly. Even if we are not doing things according to the "state of the art" we are moving in a direction and we can be directed. We will also see the logic of the correctives which might be suggested as well if we are "in the trenches" trying to figure things out.

There is really no excuse for inactivity in this area. Trust in the Lord and look to Him to direct you. Also recognize that as in any area of human endeavor, there are people who have gone before. Look to see what they have done. Evaluate what they have done to see that it treats people with disabilities with respect, does not demean them, and then emulate what you see as appropriate.

McNair
(fcbu)

Statement about slavery

My daughter Amy and her friend Heather, are working in Africa this Summer. They are teaching English, doing community development among other things. They have a blog called 2 to Africa which is mostly a lot of fun. However, Amy put up the following which I think bears repeating in a variety of venues even though it is not directly related to issues of disability. Very sobering. Unfortunately, reports are that there are more slaves today than at any time in history. May God empower us to do what we can to make the quote below a reality.

McNair

Last weekend we travelled to the central region to visit the oldest and biggest slave castle in all of sub-saharan africa. It was amazing to see. There was an awesome quote on the wall I memorized.

"In everlasting memory of the anguish of our ancestors. May those who died rest in peace. May those who return find their roots. May humanity never again perpetrate such injustice against humanity.

We the living vow to uphold this."

Ukraine, pastors and disability literature

While in the Ukraine, I was given the opportunity to speak to four relatively young pastors about issues of church and disability. It was such a fun opportunity. I became friendly with two of them over the course of the week we were together. Yuriy is tall and thin, looks like a basketball player although he was quick to tell me that he plays football (ie. soccer), and Alexander, known as Sasha (a very common nickname) is also tall, looks more like an American football player with a great heart for people with disabilities because of a visual impairment that apparently runs in his family (parent and siblings) but that he has not been affected by. The pastors were very interested in the one hour presentation I was allowed to give to them and I was honored to be able to speak to them. It is so difficult to know how something is being received when provided through a translator. I could tell I was connecting to them as Sasha at times they had tears in his eyes. Please pray that they will run with the material that was provided. It would be amazing to see these pastors and others who are working on disability mininstry come together to impact not only the Ukraine, but larger Europe. Ukraine seems very open at the moment which is very exciting. As they move toward potential membership in European communities, there is also the potential for influence there.

After the training, we had many interactions about various issues of faith and disability, and at one point, Yuriy approached me about writing a brief article for a Christian newspaper they produced, I believe for a conservative Baptist denomination that two of them are affiliated with. I think they were very open minded about the information shared. Anyway, I thought I would provide a link to an English version of that article here in case you should be interested. It is very brief (about 4 pages). My hope is that I will have the opportunity to expand upon it in the future with other articles about other aspects of Christianity and disability, and that perhaps a broader group of people will have the opportunity to read it. I think an electronic version is going to be put online as well so when that is available, I will provide a link for the novelty of it.

Please pray for the article that it will reach the people who would benefit from reading it. I don't think it has a very large circulation, perhaps 2,000 copies printed, but it may be one of the few pieces of literature produced that addresses church and disability issues. In each of the camps. parents were provided the book Joni, which is basically Joni Eareckson-Tada's biography so hopefully that book is being circulated as well.

While there, we also discussed the possiblity of a pastor's conference on disability. Kathi had the idea of inviting pastor's wives as well so we can talk to both groups. Women are quite often more open to disability issues than men, and they would have the potential to influence their pastor husbands. Other opportunities are also on the horizon in Ukraine, but we will wait to see what the Lord develops there. I think Kathi and I are available for further involvement.

One final note. I have heard from several people about groups going to Ukraine from America specifically to work in the orphanages. Our experience and the discussions we had with people in Ukraine tell us that this is very critical work. Children in orphanages are considered the equivalent of trash by some and we were told of cruel practices that sometimes occur there. The outcomes for children growing up in orphanages are at least as challenging as those in the US for children going through the foster care system. May God bless groups who are going to work in the orphanages. It is such important work.

McNair

Universal design and the Christian church

Universal design is a recently developed principle. It is defined by The Center for Universal Design as, "The design of products and environments to be usable by all people, to the greatest extent possible, without the need for adaptation or specialized design." If you go here, you can see one of their webpages which provides the definition as well as 7 principles with explanations.
One of the lessons of universal design, is that changes that are made, say for example in an environment, for the expressed purpose of making things easier for a disabled person, end up often benefitting everyone in that environment. This is illustrated in the webpage provided above.

I was thinking through the universal design principle the other day, and it occurred to me that universal design should be a basic characteristic of the Church. I suspect in its purest form, if the church were all it should be, it would be a perfect example of universal design. That is the case because the Body of Christ is comprised of people with varying abilities. The church was envisioned for humanity, so it must be designed, be comprised of structures, evidence practices, develop programs, that reflect the variety of humanity. The degree to which we do not see universal design principles within the church, in many ways is evidence that it is not all that it should be. Lets consider the principles of universal design briefly in reference to the church.

1. Principle one: Equitable use
Provide the same means of use for all users: identical whenever possible; equivalent when not.
Avoid segregating or stigmatizing any users. (UD webpage)

The church should facilitate equitable use. That means access to the programs of the church, all the benefits of church participation. The implication therefore is that programs and benefits might have to be altered such that all people can have access to them. If there is not access, the person is not wrong, the program is wrong or needs to be altered in some way. Wheelchair use should not mean that I cannot be a youth leader.

Programs and practices of the church should also not segregate and stigmatize people, particularly on the basis of perceived negative characteristics. Downs syndrome does not mean that I cannot be in the Sunday school class.

2. Principle two: Flexibility in use
Provide choice in methods of use.
Facilitate the user's accuracy and precision.
Provide adaptability to the user's pace. (UD webpage)

Flexibility implies flexibility in the delivery of information, in the social standards (no I am not talking about sin, I am talking about social skills). By understanding "users" we understand that responses can be very different. We understand, for example, that faith development is a process that is not exclusively knowledge based, so that programs that facilitate faith development are sensitive to where people are in their faith, and the contribution of knowledge to faith develoment. We also do not offer "once size fits all" worship, or Sunday school, or music. We may find that people will prefer the faith development activities designed for persons with intellectual disabilities, for example, because they are connected with real life and are less potentially esoteric. Worship alongside of a person who is atypical changes the nature of worship from quiet listening to a sermon, to service, or patient love, or a variety of other goods. Do we ever assess user's pace in sermon delivery? Do we ever assess faith development in individuals who have listened to sermon's for 20 years as a means to evaluate our programs? Sometimes I feel like if I am not understanding something that has become programmatically entrenched in the way the church has always done things, that I am at fault. But it may not be so. Universal design would say that there are others who have the same questions as I, but the programmatic "heavy hand" squelches questions of why.

3. Principle three: Simple and intuitive
Eliminate unnecessary complexity.
Be consistent with user expectations and intuition.
Accommodate a wide range of literacy and language skills.
Arrange information consistent with its importance.
Provide effective prompting and feedback during and after task completion. (UD webpage)

Are programs of the church simple and intuitive? I know that often in programs for persons with intellectual disabilities, the knowledge based orientation of the programs makes them unnecessarily complex. Somehow complexity is a high value in knowledge based approaches. But what are the user expectations of the typical church member? Are they being addressed and do we even know whether or not they are?
I have often wondered about the way church programs accommodate literacy skills (let alone language skills). How do we make material accessible in a manner that is not demeaning for those for whom literacy is an issue?
I have also wondered about the notion of arranging information consistent with its importance. In training persons with severe disabilities, there is the concept of functional curriculum. That is, teachers ask themselves whether it will make any difference in the person's life if they learn a particular thing. This notion is something that churches should consider in program development. Do we ever evaluate the comparative importance of the information we are sharing or do we just blindly teach our 3rd grade Sunday school class? I remember looking through a children's picture Bible, where there was a picture of Absolom hanging by his hair from a tree! What is the point of this in terms of importance of relevance of the story to children?
Once something is learned, how to we ensure learning is maintained, or do we simply move onto the next thing?

4. Principle four: Perceptible information
Use different modes (pictorial, verbal, tactile) for redundant presentation of essential information.
Provide adequate contrast between essential information and its surroundings. (UD webpage)

How do we make relevant information perceptable, and how do we help people to understand what is relevant? Do we highlight or point out for people that this is the focus, this is the lesson, and how do we facilitate understanding?
In our current churches, we have lots of video and lots of music, etc. Is that the way to make specific content relevant because there is a difference between being culturally relevant (via technology for example) and personally relevant in terms of helping people understand what is essential. The video screens are not essential, although they may assist in bringing what is essential to the notice of those viewing. I am confident, however, that there is confusion about whether the information or the video screens are what is essential to many people.

5. Principle five: Tolerance for error
Arrange elements to minimize hazards and errors: most used elements, most accessible; hazardous elements eliminated, isolated, or shielded.
Provide warnings of hazards and errors.
Provide fail safe features.
Discourage unconscious action in tasks that require vigilance. (UD webpage)

What hazards or errors might characterize a church that is trying to include people with disabilities? In the past hazards and errors have been the focus on social skills of attendees, on the potential perceive contribution of attendees, on the demands people by virtue of their disabilities may make on attendees, the failure of leadership in recognizing the priority that should be place on ministry that involves service. Past errors have also been related to resistance to change.
People might also need to be prepared to see errors within themselves so that they can be aware of them. "We are going to have people start coming here who are autistic. Autistic people sometimes make strange noises that largely will make us feel uncomfortable, because we have not been around them enough to have their noises no longer bother us. But we will get better over time as we become acclimated to them and them to us. What we cannot do is reject them, because that is sin and we don't want to sin."

6. Principle six: Low physical effort
Allow user to maintain a neutral body position.
Use reasonable operating forces.
Minimize repetitive actions.
Minimize sustained physical effort. (UD webpage)

How can the effort to do church attendance be minimized for persons with disabilities? Whether it be not having to ride the bus to church, or just getting around? We also need to teach average church members the truth, biblically and theologically about what disability is so that they do not cause the goofy ideas that have grown out of ignorance to persist. I know of people with disabilities who will not go back to church because of the things said to them there. Things about sin and disability or sufficient faith and disability, or just a blatant lack of understanding of what life is like for a person with a disability. I will also say that many people, church people, Christian people who use the handicapped parking spots should be ashamed. I literally know of people who have come to a church, but did not stay because all of the handicapped parking spots were used. You might say, "You should be celebrating that! All the spots are filled." Yeah, but I see the mirror hangers that someone holds onto from the broken leg they had a year ago and that isn't right.

7. Principle seven: Size and space for approach and use
Provide a clear line of sight to important elements for any seated or standing user.
Make reach to all components comfortable for any seated or standing user.
Accommodate variations in hand and grip size.
Provide adequate space for the use of assistive devices or personal assistance. (UD webpage)

People should have access to what they need at a church, whether it be physical, intellectual, or emotional. I was speaking to a friend the other day with a hearing impairment. He asked the church whether they could provide an interpreter so he could attend Bible study, and they said they couldn't. But then he asked whether there was someone who could disciple him, teach him the Bible one on one, because he can understand one person at a time in a one on one conversation and they once again said no. That is just stupid. One on one is called discipleship and churches do that all around the world. His church was blocking his access to God's word because they would not facilitate approach.

So much more could be said on these points, however, I think the take home lesson, is that the Christian church should strive to be the model of universal design. It should be the example that people use whenever they discuss such principles. I believe that it is God's intention that the church be a place of openness and acceptance. A supple place where the environment is much softer than the community. Where people come and can cease their fighting and relax in love acceptance and accommodations as appropriate. A place that does not nullify the word of God by its traditions (Mark 7:13).

McNair

More thoughts on Ukraine

I wanted to share some more of my experiences with families of individuals with disabilities in the Ukraine. Kathi and I were given the privelege of meeting with families individually across the 2 weeks we were working in camps. We each probably met with 30 or more families in individual consultations, discussing their experience with a disabled family member and with the social consequences of such life experienced in their villages and cities. Below are just a few examples of the discussions we had with people half a world away.

-There was the situation I already related here of the family where the father is not present, the teenage son is rebellious, the daughter with intellectual disabilities and her younger brother live together at home, and because of the isolated nature of the village, the brother is mimicing the behaviors of the sister...the mother was desperate
-There was the teen with down's syndrome whose friends have taught her to say that she is having sex with any man she happens to meet to the chagrin of her parents and the men
-There were the children with cerebral palsy who are walked around in front of their parents all day. They lack balance to be able to walk themselves but the parents walk them with the understanding that it will result in the child being able to walk by her/himself
-There was the severely disabled girl with cerebral palsy pushed around in a stroller, whose wonderful mother is trying to get her to talk
-There was the bright young man with cerebral palsy who is in a wheelchair with small wheels (many are) which causes him to be totally dependent upon others for movement unless he crawls across the floor
-There was the woman living in poverty with the high functioning autistic son with significant artistic ability wondering how to encourge his gifts in spite of her social situation
-There was the family with twins, both having mild cerebral palsy, who wondered whether their children would ever walk
-There was the man with intellectual disabilities who "ruled the roost" to the frustration of his parents who empowered him in his refusal to do anything
-There was the sweet man with intellectual disabilities who could be easily victimized and was the butt of humor in his village to the sadness of his family
-There was the boy who was doing very well after surgery to correct a physical disability, but who also lived with a sister with severe mental illness who the family felt stigmatized them
-There was the sweet girl with down's syndrome who was the natural center of attention everywhere she went because of her endearing qualities
-There was the sweet man with down's syndrome who lost his parents and is now living with his aunt who can find nothing good about him and was constantly picking at him about nonsensical things
-There was the literally, brilliant boy with spina bifida, who was totally in control of his young mother who was at her wits end
-There was the group of women asking if I would please send the drug from America that would raise their children's IQ so they would no longer have intellectual disabilities
-And there was the small group of fathers who shared their struggles, but also their total commitment to their children and their families. I told them they were like rare gems and I was blessed to be with them.

There were also other stories I could share. So you can see that the issues are very similar to those of parents in America. Kathi and I did our best to confront parents when we needed to, help parents to set limits, give them ideas for developing communication, and facilitating independence, to help to think past traditional notions of work in any setting toward different ways of looking at work and life and contributions to the family and community by family members with disabilities. We also tried to praise parents for the stands they have taken in their communities and their efforts to raise their children in difficult social situations of divorce, ostracism and misunderstanding.

I can tell you it was like no other international experience I have ever had. I feel like I have some understanding of people in Ukraine and of their day to day life experience. I was so blessed to be confided in, and to be listened to. The families made me feel like I understood them and had something to contribute to improving their lives.

McNair

Joni Speaks at CBU Commencement

In the May 14th entry to this blog, I related that Joni Eareckson-Tada had been the commencement speaker. It was such a great blessing to have her. She packed so much heart and encouragement into her few comments. It was a delight for her to be on campus.

This week, video of her commencement address was placed on YouTube by CBU staff so I wanted to make you aware of the opportunity to hear her remarks. At right, you can see the three links to her address. If no longer at the right, they will appear at the bottom of the page.

Once again, I cannot tell you what an honor it was to have someone of Joni's stature in the field of disability ministry on CBU's campus.

McNair

Ukraine

I am writing this brief entry from Lutsk in the Ukraine. I have been here now for 2 weeks, working at camps for children with disabilities and their families. It has been rewarding, fascinating, encouraging, and heartbreaking. One of my responsibilities as "the professor in residence" has been to council parents about the issues they are facing with their children with disabilities. I suspect I have spoken with 25 parents, mostly individually, and at times in groups of 2-4. In general, they face the same issues as parents in the USA, frustration with government services, stigmatization and community isolation, issues of teaching their children and assisting them to behave appropriately. Some of their stories have been so sad, like the mother whose husband supports her financially, but will not live at home with her, her rebellious teenager who has rejected the family, her disabled daughter, and her preschool son, who because of the isolated village she lives in, has no peers his age, so he spends all his time with the disabled daughter, and has been learning her disability related behaviors such that he acts as if he is intellectually disabled. So hard to know how to help such people.

But on the positive side, there are people here very interested in reaching out to people with disabilities from a church context, who have been eager for information about how they might do so. They have asked me many questions and take up the information like very dry sponges. I feel like I am really being given the opportunity to challenge them and they appear to be up for the challenge! It is really exciting.

Future developments might include a conference in Western Ukraine for pastors from Ukraine, Poland and Romania that I might be involved in, another conference in more central Ukraine, and early discussions about a collaboration with a Bible college here for assisting with the delivery of coursework, and potentially other joint projects.

I am tired, but very encouraged by this visit. Exciting things are happening here, and Ukraine has the potential to be a leader in Europe in disability ministry.

More when I get back July 11th.

McNair

Go and make vs. build and they will come

I teach a class that is called "The Exceptional Child." It is basically a class that is an introduction to disability. One of my assignments in the class is for students to contact their local church and interview their pastor about the priority the church places on recruiting and ministering to persons with various disabilities. All too often, students report that the pastor says that they have handicapped parking spaces and accessible restrooms, and that they also have areas for people who use wheelchairs. The typical comment is that "They are welcome and that we would serve them if they came." In a kind of Field of Dreams model for ministry, you simply meet the basic requirements of the law in the United States (handicapped parking places and accessible restrooms) and people with disabilities will be so impressed that they will come to your church! Build the large bathroom stall and they will come!

I remember that was actually a principle I was taught as an undergrad in Christian Education (my major). "If you want to minister to widows, start talking to them from the pulpit and they will come." I guess that it makes a little sense.

As I sat in church this morning, however, Dr. Gary Inrig, my pastor was teaching on Matthew 28:16-20. The passage states, "Go therefore and make disciples of all the nations, baptizing them in the name of the Father and the Son and the Holy Spirit..." As Gary stated, it doesn't say, "Sit here and wait in Galilee and people will come." It says go to the nations. I am confident that relates to persons with disabilities as they are just members of the nations. We should go to them as we would go to any other member of the nations and invite them in. Jesus' command is "Go" not "Build it and they will come" or "We will serve them if they come to us." There is a big difference between going and sitting and waiting.

One other note, Titus 2:10 also states "Make the teaching about God our savior attractive in every way." I suspect this is not just a verse about knowledge, about the content of instructional lessons in the church. I don't think it just means that we should use lots of video screens and the latest technology, although I am not opposed to that. It is something different.

How would I make the teaching about God our savior attractive to persons with disabilities and their families? I could begin by accepting them both the families and the people with disabilities. I might even talk about the life experience of people with disabilities from the pulpit because it gives the impression that those in leadership have thought about both disability and theology as it relates to disability. It makes a difference. Human experience around disability and how an understanding of God relates to it is nuanced. There is a difference between being born with a disability or having some traumatic event in your life that causes a disability, or just kind of "rusting" (as I feel is happening to me) such that disabilities of vision or physical or memory just begin to happen as a result of age. Does God, does the Bible, does theology have nothing to say to these aspects of human experience? You might think it doesn't based on the amount of time that pastor's dedicate to the subject. I could begin also by going out and trying to find persons with disabilities and their families and telling them about the priority that God seems to place on them and the importance of their participation within the church. The church desperately needs to discover that importance and reflect it in its practices.

Then, the teaching about our God and savior would be SO attractive, it would be hard to stay away. The church would be REALLY accepting people, really loving people as it was meant to. The church would be seeking out people who are "difficult to love" because of social skills and that would be attractive to the community. The church would really be about acceptance and loving others as a reflection of its God and savior and it would be hard to stay away.

McNair

Cal Baptist receives WASC approval for Disability Studies MA

California Baptist University recently received preliminary approval for a MA degree in disability studies. Final approval will hopefully be received this coming Fall. The degree has a variety of unique aspects. http://www.calbaptist.edu/disabilitystudies/

First, the program is entirely online. So, basically you will be able to enroll in this degree program from anywhere where you have decent internet access. Aspects of the program will by synchronous and aspects asynchronous, but the program is designed such that it will work with your schedule.

Second, it is offered by a Christian university. There are several Christian colleges/universities working in this area, however, Cal Baptist is one of the few with a MA degree. We hope to address any issues in disability studies, but we are unabashedly Christian as well. A Christian approach will be developed and discussed in the program.

Third, one cognate area students may choose is to specialize in Disability Ministry. That narrows the field down even more. We anticipate an awakening within the church and we want to prepare people who can reach out and embrace people experiencing various disaiblities. Students may also choose Leadership or Disability Policy as areas of focus.

Fourth, we have been enjoying a collaborative relationship with the Joni and friends organization who have been helpful in the design of this study area. Joni and friends are world leaders in aspects of Christianity and disability. We look forward to their help in facilitating internship/fieldwork opportunities for students around the world.

Courses will begin in the Fall of 2008! So if this is a program of interest to you, visit our website, send me an email, jmcnair@calbaptist.edu and we will try to get your questions answered.

May God bless and lead us in this endeavor!

McNair
(fcbu)

Neurodiversity

Neurodiversity (noo.roh.di.VUR.suh.tee, -dy.VUR.suh.tee) n. The variety of non-debilitating neurological behaviors and abilities exhibited by the human race. Also: neuro-diversity.—neurodiverse adj. (from Word Spy)

So neurodiversity is about how people's minds are different. As Word Spy goes on to quote, it might include people's minds affected by autism, dyslexia, ADHD, dyspraxia and tourette's syndrome. I would also add people with intellectual disabilities. The key to this definition is "non-debilitating" and who knows what that means? Their assumption is that being autistic, or dyslexic or having tourette's syndrome are not debilitating in our society. But one can be debilitated in a variety of ways. For most people with the differences mentioned, the debilitation is societally caused. Persons with autism, for example, often evidence social skills/social behaviors which are atypical. It doesn't take much in the way of movement ouside of the limited range of "normal" in the area of social skills for one to at worst feel debilitated, and at best to have the feeling, "I am strange."

Generally speaking, I would agree with the notion of acceptance of people who are not "neurotypical" as I would advocate for acceptance of other similar aspects of human diversity. Using autism again, the social differences often evidenced in autism are in no way wrong or evil. They simply require of society a greater openness and a greater willingness to expand the notion of typical or normal. As Marc Gold defined the term "mental retardation"...

Mental retardation refers to a level of functioning which requires from
society significantly above average training procedures and superior assets in
adaptive behavior on the part of society, manifested throughout the life of both
society and the individual (you will get the connection if you are familiar with the old AAMR definition he was referring to)

Individuals with more severe forms of autism will make demands on me in terms of understanding their efforts at communication or in terms of not being put off by atypical behavior; in summary their differences. These differences cause me to change as a person. In reality it enlivens things, it opens things up a bit, it causes me to break out of my social skill normality straightjacket, and truly see innocent, behavioral differences in a morally uncharged manner. I make the decision to recognize that atypical behavior is not necessarily wrong or immoral behavior. It can simply be atypical.

People who are atypical can and do do amazing things that can ultimately change society. They do things like sit in an atypical place in a bus when society demands that they sit in a typical place. They do things like go to an atypical place and live among the poor and destitute when society would tell them to seek greater material wealth. They do things like teach atypical children with profound disabilities when society would tell them to teach the gifted and brightest, and not waste their life. They do things like be present to people who claim to believe in God, showing them who their God really is, and how it is that they might grow to be like him.

The notes on the Word Spy definition go on to say that "there is no such thing as 'normal' when it comes to the human mental landscape." I don't think that I would go that far. There is such a thing as average intelligence or average height and weight, and average could be equated with what is normal or typical. I think the point here is not to say that everybody is the same. The point is to open up what is accepted by the typicals as within the normal range such that people are not excluded. I am tall. You can tell me that I am not tall, but I am still tall. However, you can reject me for being atypical in the area of height, or you can say to yourself, "That guy is very tall, but that is really kind of irrelevant." You might have to hold your neck at a bit of a weird angle to talk to me (particularly if you use a wheelchair although I always try to remember to kneel) but I hope you will still talk to me.



McNair

(fcbu)

A sad lack of understanding

Well, I had an interesting past two weeks. Two weeks ago I was in Washington D.C. at the American Association on Intellectual and Developmental Disability conference. I didn't really like the format of the conference, but that is just a personal preference. What was more problematic, was that one of the main presenters was a higher up representative of the Human Genome project. I was fascinated to learn that the human genome only has about 20,000 genes, which is much less than I had been taught. Also that the wild mustard plant that populates the chaparral hills of Southern California has about 22,000 genes. Don't know what to make of that, but it does give you pause.

The larger question for me, however, is the implications of the human genome project to the future of persons with intellectual disabilities. Although the presenter spoke of genetic diseases that can be better understood and such, my mind was elsewhere. At the close of the presentation, there was the opportunity for questions. One question was asked, and then I couldn't keep silent any longer...

"The elephant in the room here, is that knowledge of the human genome and the understanding of genes that cause disability will lead to prenatal diagnosis and abortion of persons with various disabilities as has happened to people with down's syndrome. I personally do not want to live in a world without persons with intellectual disabilities. How would you respond to this concern?"

The presenter stammered about how he learned lessons from disease in his life, and then made a quick departure. I left wondering, however, whether the organization, AAIDD, or at least those who scheduled the presenter, had any notion of the connection between prenatal diagnosis and abortion of persons with genetic disabilities, or whether they supported such a connection as evidenced by the presence of the presenter. I quit the organization in 1992 when they had the leader of Planned Parenthood as a keynote presenter. What conclusion could possibly have been drawn from such a presenter other than that the organization supported the abortion of persons with intellectual disabilities. It has only been recently that I have rejoined the organization, however, I assure you that I will do what I can to change it.

During the same session, another presentation was made about the application of technology to the life of an adult with alzheimer's disease. It showed how everything from monitoring the taking of medication, to phone use, to the opening of the refrigerator or whether the stove was turned on could be done. It all seemed very cool, however, such monitoring at a distance at least in part leads to the distancing of people from people who need support, need human contact. I no longer need to have direct contact with a loved one, I can just use technology to monitor from afar. It was also reminiscent of 1984. Overall a very scary presentation, the scariness of which the presenter was oblivious to.

I thought that this is how these things happen. We chart the human genome, and the result is abortion of persons for any type of difference that we do not particularly want. It is not as if this kind of thing were not already occurring. But AAIDD was oblivious. The distancing of people from people, and the move headlong into the total monitoring, by computer of a persons life. Once again, the organization was oblivious.

Then this past week, I helped to facilitate a training on Social Role Valorization on the campus of California Baptist University. The training was excellent, and reinforced to me disconnectedness of the conference from the realities of life for and with disabled people. I honestly wonder who AAIDD thinks persons with intellectual disabilities are? Are their lives to be prevented? Are we to turn their care over to technologists?

Dr. Burton Blatt, a university special educator, and advocate for the closing of institutions in the 1960's wrote the following:

To live with our retarded children, our handicapped friends, our aging parents does place burdens on all of us, but what we must learn from the nightmare of institutionalization is that these burdens cannot be avoided or delegated, for to have a decent society we must first behave as decent individuals. Ultimately our society will discover that it is easier to meet the responsibilities to our fellow man than it is to avoid them. (A return to purgatory, from In and out of mental retardation, 1981, p. 268)

But the take home lesson is that one of the premier organizations on intellectual disabilities doesn't get it. They don't seem to know people with intellectual disabilities like I and others who were with me at the conference seem to know people with such disabilities. This lack of understanding is very sad.

McNair

Chicken soup

I recently had the opportunity to attend the American Association on Intellectual and Developmental Disability national conference in Washington D.C. I went with two great friends, Michael Hoggatt and Marvin Miller and although we had a great time, there were some aspects of the conference that were somewhat disappointing. But I will share that in a separate entry.

One highlight of the conference was a brief presentation by Diane Richler who is the president of a group called Inclusion International. I can't speak for the organization, don't know much about it, however, Diane provided a wonderful illustration about the notion of including everyone who would choose to be a part of a group. She said that when she was younger, her family was preparing a special dinner. Her mother cooked one of her famous roasted chickens. However, just as dinner was about to begin, a group of aunts, uncles and cousins arrived at the house. Because she had prepared a roasted chicken, there wasn't enough food for everyone. In her family's case, the family was told to "hold back" such that not everyone was able to eat, just the guests. Her point, however, was that with planning, there could have been food for everyone. If, for example, her mother had made chicken soup, everyone could have had dinner. However, because she made a roast chicken, everyone could not be served.

Although her point was not about the church, I immediately made the connection. If churches serve "roasted chicken" then there will not be enough for everyone to be a part. "Roasted chicken" in the way we do religious education, or provide opportunities for service, or structural church programs and logistics. However, if we are really interested in a setting that plans for participation for more people, we could make "chicken soup." A "chicken soup" form of religious education, or opportunities for service, or structural church programs and logistics.

As Diane stated, the "chicken soup" approach implies "everybody's in." We choose to have chicken soup over roasted chicken because we know that not everyone will be able to partake if we have roasted chicken. We as a group, therefore, choose to forgo the roasted for the soup.

McNair