The "reality of one's condition"

I was recently reading from a curriculum on disability. Under the heading of "Grief and Depression" was the following statement. "Acceptance does not change the reality of one's condition." As I pondered that statement, for some reason it didn't sit well with me.

As I think about the "reality" of a disability condition, I wondered about the reality functionally and the reality socially. I think that one can actually change the reality of one's condition. The reality functionally has been changed through curb cuts, TDD, and electric wheelchairs. Universal design has at times changed the environment such that the functional reality has indeed changed. Being someone with quadriplegia no longer means that I must live my life relegated to a bed, or unable to move about the community. Through creativity of people, the functional reality of many aspects of disability has changed and increasingly, people experiencing needen't accept many of the functional aspects of disability. Clearly, many aspects may never change. However, many aspects are truly due to an unimaginative environment.

The social reality is equally difficult to change it seems. How does one change the enviornment such that it sees people first? I have friends who have intellectual disabilities, yet they hold jobs, live in their own apartment, receive support from a variety of people, and generally enjoy their lives. Yet they are not seen as typical because the environment imposes a social reality on them that they have great difficulty escaping.

Clearly there is overlap between social and physical reality so that the distinction might be somewhat arbitrary. And the negative effects are clearly cumulative.

However, we as the church should be on the forefront of changing the reality of a disabling condition.

If I babysit for a friend's child with a severe disability, I have changed the reality of disability for those parents.

If I take a man with an intellectual disability out for lunch, I have changed the reality of disability for that man.

If I make a previously inaccessible building accessible, I have changed the reality of disabilty for anyone endeavoring to enter that building.

If I seek out persons experiencing various disabilities in an effort at evangelism, I change the reality of disability for those people regarding the Christian church.

Some aspects of disability must be accepted. Some aspects of disability need not be accepted if only the environment, in particular the Church would be what it was meant to be.

McNair

Garbage in the heart

Yesterday was the first day of the fall 2000 and semester at California Baptist University where I teach. At one of the meetings I was sitting with a colleague of mine Dr. Keith Walters. We were thinking through some issues related to disability. The focus of the faculty training after coming back from summer vacation was the issue of diversity. In the process of one of the meetings where we were discussing diversity, disability came up as an aspect of diversity that is not necessarily addressed. When I mentioned the issues that the church faces relative to individuals with disability, some of my colleagues were absolutely astounded. They couldn't believe that the types of things I described would actually be the case within the Christian church. Later in sitting down with Keith he made the comment that we, as Christians, are totally unaware of the garbage in our own hearts. Now to me, on some level it is a gift from God that I am unaware of the garbage in my own heart. If I were actually aware of the garbage, the specific types of garbage, the amount of garbage in my own heart I would probably just sit in a corner somewhere and cry at my despicable state. So God in his grace perhaps protects us by not fully displaying to us our entirely sinful condition. He conforms us gradually to this image.

Another aspect of this is that I have observed is that often times people will carry the façade of a behavior or language that they know is acceptable. They then go through their lives and think of themselves as good people doing the right thing etc., because they are never confronted by anything that causes them to necessarily divulge what is actually in their heart. In relation to disability, I have often found that the even though in communities and individuals there is an appearance of the smooth kind of surface where everything is fine, running underneath the surface are either negative attitudes or attitudes which reflect socially constructed notions of disability in our society. Then what periodically happens is that the community or individual is confronted with some traumatic event, some demand for change on their part or some other intrusion on their smooth surface that causes them to actually live out the exterior that they appear to have. When this confrontation comes, what happens is that the negative attitudes, the negative perceptions, the social constructions that are under the surface bubble up to the surface and we find out what is going on inside a person's mind or heart. We see the garbage that Keith was talking about come to the surface.

At times when the negativity comes to the surface, it may just bubble up in a little comment or something similar that is barely perceivable. At other times, however, it's a full-blown geyser of negative attitudes that explode forth and we are shocked at what is actually going on inside of a person's head. In the church, one of my desires is to confront individuals, groups and organizations with the presence of people with disabilities such that these underlying hidden types of things which are floating below the surface may come to the surface and therefore be addressed. It's easy for me to say I love all people. Or as my students will often find when they interview pastors relative to the people with disabilities at their churches, “We would welcome people and love people if they came to church.” That's an easy thing to say because the people are not coming and so therefore these churches are not actually being confronted with the presence of people with disabilities and the changes that their presence might cause to occur.

These confrontations which cause our character to come to the surface may be evidenced in the form of temptations. We see in the Luke Chapter 4:1-13 the story of Jesus being tempted in the wilderness. His integrity and faith in God comes out through the temptations that are thrown his way by Satan. We find from that story, that the exterior that we observe in Jesus is actually supported by an interior life of faith, prayer and of study of the Scriptures which allows him to respond the way he does.

But in many churches I sometimes find that the exterior that we see is an exterior that has not been confronted by the demands that people with various disabilities might place on the church. If the church, for example, never has an individual who uses a wheelchair present, they are never forced to find out what's below the surface relative to having the commitment and wherewithal to make the church accessible. If the church has never had a child with an intellectual disability in the church, then the church may never have been confronted with what faith development in a Sunday school class for example might actually be. Instead it is living on in practices which are much more knowledge oriented. If the church is never confronted with an individual with a severe form of autism, they may never have to come to grips with what inclusiveness might require them to do relative to the Sunday morning service or other programs within the church. As a result when people with autism do show up, the negativity that's hiding below the surface bubbles up. Sometimes it is evident in comments that your child can stay if you keep an eye on them the whole time. It bubbles up in outright rejection where parents are told they need to find a different place to worship or comments that there is no longer a place for you here.

But the upshot of these confrontations can be good though they're not necessarily beneficial to the families who experience them. They can be good for the church because I suspect even though negativity may be bubbling to the surface, at some level those who are expressing the negativity must be saying to themselves, “This is not right” or “This negativity is not what I should be engaging in” or” I am not reflecting the example of Christ through this negativity.” So the confrontation of disability once again awakens the church or individual Christians to some of the garbage in their own hearts relative to acceptance of people that have not been accepted in the past. And if this garbage in the heart is actually exposed to view either for the individual to view themselves or for the group to view, there is the potential that changes might come in the individual or in a group as a result of seeing that garbage.

I at times have been in a situation where I have confronted a church or the leadership of churches regarding heart garbage relative to individuals with disabilities and their ongoing rejection. Unfortunately, sometimes those in churches cling to the garbage in their heart rather than saying when this garbage is exposed, “This is something that I should not be doing” or “This is something that I need to change.” I would like to say that more often than not there is a spirit of repentance and a desire to want to know what to do, a desire to want to figure out how are we can be more responsive. But it is definitely not always the case.

McNair

Lorna's faith story

Please note the new viedeo below which is a woman's faith story from our Light and Power class. I never tire of hearing about how someone finally finds a church home who did not have one, whether or not they have a disability. But that they struggle to find a home is still an indictment on the church. Very sad.

If any of you who read this blog are available and interested, we are having a celebration of persons with disability at my church this coming Sunday, 8/8/10. Should be fun. I will have a very small part of the service but happy to support those who are putting it together. We will also be having our typical Light and Power class, so stop by for that as well. The church is, Trinity Church in Redlands, CA. 1551 Reservior Rd. Here is the website. http://trinityonline.org
Our church is not perfect by any stretch of the imagination, but we are trying to be obedient in the area of removing exclusive practices as they relate particularly to people with disabilities.

So come by if you are available.

McNair

Social consequences of disability

I have written elsewhere in this blog about what have been called the "social consequences of disability." That is, how does society respond to the fact that someone uses a wheelchair or has autism, or has an intellectual disability. See for example this posting Social Healing or here Social Role Valorization and Wounding.
Both of these postings provide great detail about the social consequences of disability.

I have been thinking about social consequences in reference to 2 Corinthians 12:10. It reads like this in the NIV.

That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.

This is the closing statement of a section where Paul describes the "thorn in my flesh". I am not a Bible scholar, but I don't think it is too out of bounds to think about the experiences Paul had in his life related to the quote above, at least in part due to his "thorn" his disability.
It is interesting to read the list of the 4 experiences that fall under the heading of weaknesses and think of how his experience of disability at least in part is reflected in those weaknesses.

In insults. There are so many forms of insult that persons who are affected by disability experience. Of course there are the out and out verbal insults, however, there are also the jokes, the mocking and the just general treatment people will receive simply because of their differences.

In hardships. Hardships are part of life for people with disabilities, just about independent of the type of disability one has. Many hardships are avoidable if society were only different.

In persecutions. There is much in literature which describes the experience of persecution that people with disabilities experience. Should they be Christians, they can only expect that experience of persecution to increase. Persecution is without a doubt a social consequence of disability.

In difficulties. Be they intentional or otherwise, the experience of disabilty is an experience of difficulty. One need only look at the various systems designed to help by governments and societies to get a first hand picture of difficulties.

So Paul understands the experience of living with the social consequences of disability. But his response to this is amazing. "I will boast gladly about my weaknesses, so that Christ's power may rest on me." That is his response to God's telling him, "My grace is sufficient for you, for my power is made perfect in weakness."
That is my prayer for people who are experiencing the insults, the hardships, the persecutions and the difficulties leveled against them because of differences they have in their lives which have come to be called disabilities. My prayer is that God's power would be evidenced in their weakness, be perfected in their lives through their weakness.
Let me also say, however, that my prayer is that we all will work to lessen the social consequences of disability to the degree we are able. Sure, God's power can be seen in the weakness of persecution, but I needn't be the agent of the persecution or hardship or insults or difficulties that people face. It could be that part of the grace God dispenses in the lives of persons experiencing disability is what I do in attenuating the social consequences.
But it should comfort you if you are reading this entry and you experience a disability that Paul, writer of books of the Bible, great man of faith, knows something of your experience, and in the midst of it, found strength to face the difficulties of his life through the grace of God, even seeing God's strength through his weaknesses to the point of making that a cause for boasting.

McNair

Community Based Isolation

I recently had a meeting with a friend of mine and we were discussing the problems faced by people with various disabilities, particularly intellectual disabilities, who live in group homes in the community. The friend I was talking with said that the people are living in “community-based isolation.” That is, although they are physically integrated into the community they are definitely not socially integrated into the community. In reality they seem to be in a form of protective custody in the community. It's not unlike the way that law enforcement will take an individual who they feel is at risk of harm from and put them in a form of protective custody. This could occur by putting them in a jail cell or in some sort of a hotel room with guards but the idea is that you do not want any harm to come to the individual so you put them in a form of protective custody. The protective custody is fine if your goal for an individual is just to keep them from harm, but a person's life while they're living in protective custody is hardly a life. They cannot move freely about the community and they have the things that they can and can't do determined by those who are facilitating protective custody over them.

So take the protective custody example and move it over to individuals with disabilities living in group homes. The way that this custody is often acted out is that if I am a person who does not like sugary soft drinks I will keep those in my protective custody from having sugary soft drinks. If I'm a person who does not think that participating in a religious group is of importance, I willl not allow you to participate in a religious group because I don’t think it's important for you either. So often with protective custody is not just protection but also as the imposition of values of those who are facilitating the protective custody.

The lives of people living in group homes in the community should never have been designed to be a form of protective custody. Now as I have stated elsewhere in this blog I clearly understand that people with disabilities, particularly intellectual disabilities, often are the victim of people who would take advantage of them and try to use them for whatever their purient interests might be. But while I don't want to just give those who are bad people complete access to do willy-nilly whenever they would choose to do to individuals with disabilities, at the same time I don't want to be protective to the point where those with disabilities have no life because they live in a form of protective custody. They live in a form of community-based isolation.

There are those who think that because someone is physically living in the community that they are integrated in the community but nothing could be further from the truth. On some level what we actually have are little institutions in the community that are called group homes that are either so highly regulated people are living in protective custody or the people who run them are so afraid of litigation that they will not allow a person to do anything that could be in even the remotest way perceived as dangerous because they don't want the legal ramifications of a person having some sort of a problem as a result of access to the community. The end result is that people who are adults with disabilities are treated as children, protected as children, protected as you would protect a little child down to determining what they can or can't do who they can or cannot be with and so they live the life of a protected little child. But these individuals are adults. Adults sometimes do things that they shouldn't do. They smoke cigarettes, they drink too much coffee, they may go places that potentially they shouldn't go. A part of being an adult is the dignity of risk. A part of being an adult is making some decisions for myself which other people may or may not agree with.

I'm sure all of us have at one time or another spoken to someone who smokes cigarettes. Cigarettes have been determined to be bad for your health. However, do I have the responsibility to take the cigarettes from an adult, if a person lights up a cigarette should I pull it out of their mouth and say you shouldn't smoke? The ability to smoke is called freedom, and throughout our history, people have literally given their lives to protect our freedom. Well if I do grab a cigarette out of someone’s mouth, I may have to face the ramifications of that which will likely be a hostile response from the person. I can try, but I really don’t have the right to regulate someone else’s life with my own personal opinion about what that person should or should not do. However because a person has some form of disability those typical societal rules which would not allow me to regulate the life of another people another person are totally thrown out the window and I feel like I have the absolute right by virtue of the fact that a person has a disability to regulate their lives in areas of safety in terms of access to people in terms of even simple like choices like of what to eat at how late to stay up at night. In reality, this is mostly because of the effect their behaviors may have on me and my convenience as the person who is supervising the living arrangements, even though it's all done in the name of safety, in the name of protection, in the name of what's best for an individual. Even stating it in that way it's obvious to see how paternalistic these notions are. However, there is a big difference between what I think a person should or should not be able to do and what a person is able or not able to do.

So once again I am not advocating that all all notions of safety or regulation be thrown out the window. However, at the same time we must recognize that a life lived in protective custody is not a real life and what we're trying to facilitate is that people, to the degree that they're able, have a real life. And when you have a real life that does that mean that you will never be hurt. Of course not Actually the fact that you are hurt may indicate that you are living a real life. All of us disabled or not have at one point or another been hurt in a whole variety of ways whether we have been physically hurt or emotionally hurt or whether we've been victimized on some level or another, by virtue of the fact that we are living a real life. None of us would deliberately desire harm for persons with intellectual disabilities. But the only life where one does not experience any harm is by sentencing a person to protective custody. This sentences a person to not having as real a life as they possibly might have.

Now this blog is about disability and Christianity. So the major focus here is helping people to have as real life as possible by allowing them to have access to the church and the programs of the church. Are there bad people who go to church who could potentially victimize someone with a disability? Of course there are. But the lion’s share of people the majority of people are not those types of people. There is also the safeguard that people who are attending churches are looking out for one another to make sure people are safe. So can people be victimized? Of course they can. Yet at the same time the risk, the dignity of risk that goes along with access to these types of settings is the kind of thing that will facilitate a person having a real life.

McNair

Please keep Joni and Ken Tada in your prayers

This morning, the Joni and Friends website shared that Joni has been diagnosed with cancer. Please visit this website for the full letter drafted by Joni.

In the letter she states,

Please pray that the upcoming tests, surgery and subsequent treatment will be successful (thankfully, my quadriplegia has no bearing on either the surgery or the treatment; I'm like any other woman with breast cancer -- I simply want to focus my energies on getting better).

Of course, I believe that God can and does heal and I covet your prayers to that end. Most of all, please pray that God will pour out grace-upon-grace on Ken and me.

God has used and continues to use Joni in my life as an example of trusting in the sovereignity of God. I would wish to know and trust in God as Joni has learned to do throughout her life, but I would not wish to face the trials that she has faced to give her complete trust in God. When I waver in my faith or in my trust in God (I wish that were less often than it is) I will often think of her and am encouraged.

I must also tell you that through some opportunities I have had to meet and speak with her, she is real. Real about her life experience and the impact it has had on her. She is not some pie in the sky purveyor of platitudes. But someone who has lived the raw edge of life's challenges, coming away with a dogged desire to trust God, and look on her significant challenges as a way to encourage others. Her faith is such that I suspect she received the diagnosis of cancer anticipating how God would use it in her life to His glory.

Please keep Joni and Ken in your prayers as they move forward into the unknown of cancer. Cancer may not be known to them, but God is known and as real as quadriplegia, even more real. I leave you with one more quote from her letter.

For years I have hoped that my quadriplegia might encourage people struggling with cancer… now I have a chance to truly empathize and journey alongside, affirming that God's grace is always sufficient for whatever the disease or disability. (Joni 6/23/10)

McNair

"Celebrating the past: Honoring the legacy of Eunice Kennedy Shriver and Senator Edward Kennedy"

That was the title of a presentation given to the entire membership this morning at the AAIDD conference. The majority of the presentation centered on Mrs. Shriver who was an amazing advocate for persons with intellectual disabilities in America. Her brothers President Kennedy and Sen. Edward Kennedy are the ones often credited with the actual programs and legislation that affected individuals with disabilities, but as one of the presenters indicated quoting Sen. Kennedy, "It was all Eunice!" I doubt that is entirely true, but it was clear nontheless from the presentation that she was the momentum behind much of the policy that impacts people with a wide variety of disabilities. For a more complete discussion of her contributions, I would refer you to an article by Dr. David Braddock entitled, "Honoring Eunice Kennedy Shriver's Legacy in Intellectual Disability" published in the journal, Intellectual and Developmental Disabilities, vol 48, number 1, February 2010.

There were several things about the presentation about Mrs. Shriver, however, that I was unaware of. I plan to become a student of her life in the future, but these two things were quite remarkable.

First is that she was a very devout Catholic. Steven Eidelman one of the presenters today who knew Mrs. Shriver personally, indicated that she would attend Mass twice a day, rain or shine, going to a little church near where their offices were. I love knowing that someone having such a profound impact on our country in the area of disability, was at least partially motivated by her faith in God. I wish that had been explored much more in the presentation, but it was mentioned and described as a critical part of who she was.

The second was that she was staunchly pro life. Another of the presenters, Deborah Spitalnik who was clearly not pro life, even apologized for giving Mrs. Shriver that label. Obviously, in the circles she runs in, to be called pro life is to be denegrated. How difficult for her (Spitalnik) to reconcile the life of and contributions of Mrs. Shriver with her pro life stance. She concluded her comments with a comparison of Sen. Kennedy and Mrs. Shriver as being loving family members on opposite sides of the issue and how wonderful that was. But there were the political jokes or innuendo about Bush or others who might disagree with her. Yet she herself could not even use the term pro life without an apology for characterizing Mrs. Shriver that way.

To me, it is not Mrs. Shriver who was inconsistent in her position towards life and intellectual disability, it is those like Spitalnik who are inconsistent. How can someone be in an organization like AAIDD which supposedly is all about what is best for persons with intellectual and developmental disability and advocate for the taking of their lives via abortion. This has been the case in the past as well with the AAIDD stage being given to those who would "prevent" intellectual disability via abortion. To me it is painfully inconsistent.

But praise and thank God for the life of Eunice Kennedy Shriver. She made her mark on the country and the world as well, bettering the lives of persons with disabilities in myriad ways. To quote the closing paragraph of the Braddock article mentioned above,

So, in every country across the globe, in every city, town and remote village - and she touched almost all of them during her life - let the word go forth to honor the legacy of Eunice Kennedy Shriver.

McNair

AAIDD Providence

I am currently at the annual meeting of the American Association on Intellectual and Developmental Disabilities. I am the incoming president of the Religion and Spirituality Division of the organization and have been enjoying interactions with old friends and have been making some new friends.

Today, I attended a session by Dr. Robert Schalock, a very important researcher in the field of disability. He was the moderator of a session about the Intellectual Disability: Definition, Classification, and Systems of Supports (Eleventh edition) The AAIDD is the organization which defines intellectual disability, which is no small task as it impacts people in terms of receiving services and legal responsibilities. I found it a very informative session, and those in attendance were a "who's who" of the field of intellectual disability for the past 20 years or so.

Two very positive things jumped out at me from the meeting actually 3. First, I plan to purchase the book noted above. I think it is critical to understand the direction the field is going in, and particularly relates to my interests in policy development for the church. Second and related, there seems to be a movement in the definitions towards more of a community focus, and a understanding of intellectual disability on the basis of services needed versus past notions of assessment and identification. This has always seemed to be an issue. If I label you intellectually disabled, that really tells me very little about who you are in really any way. However, should I describe the supports or services you need, I have a better handle on your needs professionally, and I at least have the potential of moving away from giving you a label that causes you to be devalued by society. It is a positive move and I raised my hand and told them so!

Thirdly, attached to the definition are what they call 5 assumptions. I will list them all here at a future date, when I have my copy of the book. But assumption #5 I did copy down. Here is what it states,

With appropriate personalized supports over a sustained period, the life functioning of the person with intellectual disability generally will improve.

I love that, but recognize that much of those kinds of efforts cease after one leaves school. I have clearly seen this principle in effect in a religious setting. Spiritual understanding and its effect on behavior, language, faith development has been at times staggering to me. I am ashamed to admit that I have had expectations that have often been beautifully exceeded by friends of mine with disabilities. I will often look at Kathi at our Light and Power class, at times holding back the tears at the spiritual insights of people, who as adults, continue to grow and develop as human beings.

I also raised the issue (when I raised my hand) that I feel that we are a bit stuck with group homes being as they are, in that we seem to be at a place, similar but not the same, that we were with institutions in the 70's. People are in the community in little institutional homes rather than in large institutions of the past. They are still socially isolated, they are still controlled and lacking in freedom, but it is individually on a smaller scale (although taken together, it is a scale of great magnitude). Dr. Schalock stated that we don't need another deinstitutionaliation movement, but I am not sure I agree. I think we do need another de-little-institutionalization movement where people gain freedom while in group homes. It is the next phase, I think, and churches are an integral part of facilitating the next phase. The Christian community can be both advocating for change, and also be the provider of real lives for group home residents. Let us have access to isolated people and let us bring real life to them. I honestly think that is what we have to offer.

McNair

Autism & Alleluias

I was contacted recently about reviewing the new book, Autism & Alleluias here. The book is written by Kathleen Deyer Bolduc and as my friend Bill Gaventa describes in the Forward is like a "book of modern day psalms." I think it is the kind of book that parents or family members of an individual with autism would read and find encouraging. The reader gets a snapshot of life experience with someone with autism, and then is pointed back to scripture, faith, prayer in integrating that experience. The average reader will find this book very accessible. I think it would also give someone who isn't very experienced about life with a child with autism many insights into the challenges that parents and families face.


McNair

Growing pains

Something occurred to me the other day, actually in the midst of doing a presentation at the Joni and friends conference in Pasadena this past weekend. The changes that the church is/will be/should be going through are going to cause discomfort, perhaps emotional distress to those who want to keep things the same. I have commented elsewhere in this blog that there are those who want video screens or texting questions to the pastor, or some other change, and think they are being so innovative. It is the preoccupation with all things technology. To some this is "painful" as pastors aren't behind podiums and the music is different (I can remember when electric guitars were cutting edge, which only tells you how old I am). But though the presentation is different the message, those present, and the focus are pretty much the same.

The kind of change that I am talking about is the change that comes from including all of the people who would want to be part of a church in the church. People are much more willing to buy a video screen then they are to be inclusive. We still have heated discussions (happened this past Saturday) about whether people with disabilities should be integrated into church programs. We still desire to segregate them. I compared it to cutting off my foot or hand and placing it across the room. It should be a part of me, but it isn't because it is separated. To me that implies we are trying to be something that we might call the "church" (an idea of the church) when we should be becoming the Body of Christ. Please don't get me wrong...The Church is the answer. No doubt about it. However, I don't think it is the church the way it currently is because the church the way it currently is is exclusionary. It is a form of church.

The idea that I had while presenting this past weekend, is that the "difficulties" the church faces as it changes to include all people, are growing pains.

I think they are the growing pains that happen when the "church" becomes the Body of Christ.

I therefore embrace the challenges, the discomfort, the wondering what to do. I will even embrace the errors that come with trying to do something not quite done before. All those are the growing pains of the "church" becoming the Body of Christ.

I remember being a gangly 14 year old who was 6'5". I had to think about walking I was so uncoordinated. That is how the church would be and at times,currently is if it is embracing those with disability in its midst. It is ungainly and uncoordinated. It is experiencing a period of growth it hasn't for a long time. Embrace the pain that comes with growth. Pain usually causes you to do things differently than the way you used to do them. Bring on the pain and seek God in the midst of growth.
McNair

Good intentions and laziness

In my role as a special ed professor, I am often visiting classrooms where student teachers work under a "master" teacher in order to learn how to be a teacher through direct practice. Typically these classrooms are a mixed bag. There are some teachers who truly are masters at what they do. I look forward to visiting those classrooms because I can always learn something new from them. Although I teach teachers how to work with children with moderate to severe disabilities, my actual classroom teaching experience is 20 years old. So to visit the class of an excellent teacher who has been teaching for 20 years is a treat for me!

But then, there are those teachers who for whatever reason are doing little or nothing. It is like they got a credential from a school and then just stopped doing anything that reflects best practices. It breaks my heart when I see students in these kinds of classes, and breaks my heart even more when teachers that I have trained have regressed to this level. This semester has been particularly disheartening on both of these levels.

On visiting one of my student teachers, the "master" teacher literally had 2 and 1/2 hours of free time built into the schedule. I can't believe that the school district would tolerate such a thing, but perhaps that tells you what they think about students with severe disabilities. The time spent "working" was filled with doing endless puzzles, or sitting in a circle singing songs, which could be a good instructional activity if the students had the intellectual capability to learn from the songs but unfortunately they didn't. Other activities are totally non functional for the students. Yet the one teacher had a bulletin board by her desk covered with recognitions/awards from the district, and the other teacher I think had good intentions, liked his students, but was a total slacker and was probably being paid like 50K a year to be a baby sitter.

I always warn my teachers that if I am an advocate for a parent and am sitting across the table from them at an IEP, and they are not doing what they should be doing, I will go after them.

But it is when one of my students becomes a babysitter that I really get bummed out. That also happened this semester. One of my student teachers was in this classroom and was literally unable to do the best practices that she was required to do because the teacher was not practicing them. She was frustrated with the placement as was I. But I know that that "master" teacher knows what to do, but must be just too freaking lazy to do what she should. When asked about monitoring student progress, the "master" teacher gave the typical stupid answer that she "knows where each student is." SO if you have a class of 15 students and each one has say 8 objectives, then you are keeping the data on 120 objectives in your head. You see this is simply laziness. But the teacher is friendly and upbeat, and has good intentions so she will get by being nothing more than a babysitter when she should be condemned for being a slacker.

Switching to issues of religious education of persons with disabilities, I remember providing a training on disability ministry to a group of ministry leaders. One woman in the group became very upset, saying "You are too critical! You are being unkind!" Well, if I walked into your ministry at your church, I would celebrate that fact that you have a ministry, in the same manner that I would celebrate that students with severe disabilities have access to a public school education. I don't walk into random ministries or classrooms and criticize what is happening there. However, when I am invited as an evaluator in order to assist in improving things, or I am designated to train people in best practices, good intentions are important, however, I am more interested in best practices. For my own children, I would have rather had a teacher who was grumpy toward them but taught them how to read, or how to write so that when they left the setting they knew how to read or write than to have them in some setting where the teacher had good intentions, but nothing educationally was going on because that teacher didn't care enough to learn about and develop the best practices. Also when confronted with best practices or trained in best practices, they should be embraced, not rejected because they are too hard.

I am happy for good intentions, but I would rather have best practices. Sure, start something just to get it going, but ultimately find out what there is to know about how to best do what you are doing. If you don't care to find out, or find out what you should do and then don't do it, you should expect a certain set of outcomes. As I look at students with moderate/severe disabilities leaving schools with little or no skills, I can only assume that nothing was taught. Bad teachers rely on their perception that nothing can be taught. But I can only assume that if children are in school, someone things they can learn skills. So if they have no skills, then either they were not taught, or the basic assumption that they can learn skills is flawed. The truth is they were not taught!

McNair

The good Samaritan

Tonight I was speaking to my class about the family life cycle as it relates to people with disabilities and their families. The research literature at times mentions "chronic sorrow" in regard to the life cycle in that at every stage of life, people with disabilities and their families are often confronted with the impact of disability on their lives. Some of those impacts are directly due to the impairment the person has, however, often the negative experiences are due to the social consequences of having a disability. That is the way the individual or family experiences life with disability being a part of that life.

Before getting into this discussion, I asked students to report on an assignment they needed to complete. The assignment was to interview the pastor of their church, or at least someone in leadership about the priority the church places on people with disabilities. A common reply was that there was a handful of people who were attending the church, but that was all. Of course they would be willing to serve others if they came but that was all they had.

As I thought of the woundedness related to the social consequences of disability particularly related to Wolfensberger's 18 wounds, I was reminded of the story of the Good Samaritan. I won't retell the story, but the approach of the churches interviewed and reported on made me think of how churches today might retell that story. I suspect that first of all, the Samaritan wouldn't have seen the wounded man in the first place, or at least claim to not have seen him or known about him. But using the rationale of the church leaders interviewed, once he saw the wounded man, their response would have been, "You know, there is a hotel up the road. And if you get yourself there, I would be willing to help you out, to patch you wounds and all. Just get yourself to the hotel. Ok then, see you later."
Actually, more likely they would ignore the wounded man and blame him for not coming to the church where they would help him if he were to come there.

So we figuratively have wounded, bleeding people lying in desperate pain, in desperate need, and we glibly say that if they came to the hotel (church) we would patch their wounds. These are truly, desperately wounded people who have probably showed up at a church in the past and have been turned away. Yet our response is to tell them to suck it up and ask for help. They won't do it!! They haven't the ability to do it!!

It is not just people with intellectual disabilities who haven't the ability to get to church often simply because they haven't a driver's license (do you really think that churches don't know that people with intellectual disabilities haven't the abiltiy to drive?) so couldn't get there if they wanted to. It is truly that these people are hurting and are either fearful of further hurting/attacks, are feeling that they are unwanted because no one is coming after them, or simply haven't the strength to come. Do people always have to ask/beg me to do something for me to do it or at least volunteer to do something for them? Or might I recognize that my resources (time, money, home, etc.) are not just for me and might be shared with someone else and volunteer, or even insist that the hurting person take them or use them.

So the dying wounded man lies by the side of the road and the Christian Samaritans sit in the church saying we would serve him if he came. I mean c'mon we have handicapped parking spaces and accessible restrooms.
McNair

3/21/10 World Down Syndrome Day

"Your search yielded no results"

Rarely does this statement cause me happiness when it appears on my computer screen. Typically it means that I haven't been able to find what I was looking for. But today, I smiled happily at my computer screen. They get it. You see, I searched the Down Syndrome International website for the word "prevention" and received that message. I say again, they get it.

You see, people who know people with down's syndrome, are typically much less likely to want to be rid of it. That is probably because the only way to be rid of it is to be rid of the people who have it. I believe that only those who have never had an interaction with a person with down's syndrome would want to be rid of them, at all costs, including prenatally diagnosing their presence and killing them. But in the warped minds of the pro-choice world, this is totally acceptable...perhaps.

Bill Armer (2007) writes the following in, Eugenetics: a polemical view of social policy in the genetic age.

It is sometimes suggested by scholars that eugenics was some form of pseudoscientific aberration of the first half of the twentieth century which is nowadays of historical interest perhaps, but has no place in contemporary scientific society...Nonetheless, eugenic ideology, and particularly ideas that the human race may and should be 'improved', is certainly extant today...The fundamental issue to be borne in mind is that the overt eugenics movement in the west had two key values: the 'improvement of the human stock' and the avoidance of financial drain on society." (p. 1).

Armer discusses the term "provisional pregnancy" which is clearly related to women carrying a baby with down's syndrome among other 'obvious' reasons for abortion (obvious to the medical profession it would seem). Pregnancy is now provisional untill the experts can council us as to whether or not our children are 'viable' or in some way 'worthy' of birth. Funny how your ideas will sometimes "come home to roost" as the saying goes.

Armer also quotes Alison Davis (1987, Women with disaiblities: abortion and liberation in Disability, Handicap & Society, p. 283)

...the mainstream women's movement has made the mistake of transferring our oppression to the unborn...it becaue natural to eliminate or ignore those (with) conflicting interests who were too vulnerable to fight back...the mainstream women's movement claims to support women with disaiblities and help them fight against their double oppression [as women and as disabled people], but I do not now believe that it is possible to do so while...defending so aggresively the 'right to choose' to kill unborn children because they suffere from exactly the same disabilities.

The human genome project will only convolute these issues as there will be more to 'assess' in order to 'prevent'. To cut the doublespeak, more children will be diagnosed prenatally as having an undesirable characteristics and then killed through abortion. How people can support and fight for rights of individuals at one point in their lives and work voraciously to kill them at another point in their lives is simply hypocritical.

So God bless Down Syndrome International. May they always be found on the side of life for people with down's syndrome and all people. In terms of down's syndrome, prevention=death.

McNair

Amos Yong at Cal Baptist

Dr. Amos Yong will provide a
Special Lecture on issues in Theology and Disability
Thursday March 25, 2010 at 430-6 pm
Copenbarger Room, Yeager Center
California Baptist University

Dr. Yong is J. Rodman Williams Professor of Theology and
Director of the Doctor of Philosophy program,
Regent University School of Divinity. He is author of 11 books
and numerous articles on Biblical and theological issues. One
of his books is the 2007 volume, “Theology and Down Syndrome:
Reimagining Disability in Late Modernity.” All faculty, staff and students
are invited to this free lecture.

Sponsored by the Disability Studies Institute at CBU and the
College of Education.

The Church and Disability / The Orchard

I have just published two new books. The first is entitled The Church and Disability and is basically selections from the first five years of my weblog, disabledChristianity. As I went through the entries, I was interested once again with what, I believe, God has revealed to me about issues of theology and disability, disability ministry, people with disablities and societal and church attitudes towards people experiencing disability. It is perhaps the best compilation of much of my thought on these issues. It is a convenient, easily accessible means to view these ideas.

I would encourage readers (parents, individuals with disabilities,professionals or church leaders) to consider picking up a copy for themselves or to share with others who need to open their minds to the potential of the church. Because it is entries from a weblog, it is perfect for daily readings.
Please click on this link for more information. https://www.createspace.com/3398398

The second book is entitled The Orchard and is a political fantasy about societal and political engagement. It builds and expands on Niebuhr's ideas encapsulated in his book Christ and Culture. More information about this book is available at this link. https://www.createspace.com/3396835
Thanks
McNair

DTS and DBU

I had an amazing day today. I had the opportunity to meet with two men who have been involved in the development of a new course on the theology of disability and suffering at Dallas Theological Seminary which is one of the premier seminaries in America. Daniel Thomson spearheaded the development of the course at DTS and with Dr. Larry Watters coming alongside has put together what looks to be an amazing offering. The course is online and is a series of asynchronous lectures which I should add are close captioned. In addition material delivered in the lectures is being assembled into a textbook which will no doubt be a must have for people interested in the subject. The good news too is that it is largely a theological work.

Dallas Baptist University is also thinking through how they might build disability issues into their curriculum. There was a sweet openness at the meeting that began with their president. It will be exciting to see what develops there in the next few years.

At Cal Baptist we just keep plugging along. Our MA program in disabity studies is off the ground with a wonderful group of students and we are looking forward to launching our second cohort in the fall (2010).

In the midst of discussions we heard about other Christian colleges who refuse to house courses on disability within their Bible departments or to allow courses to have titles reflecting that the courses are about theology. It is both angering and frustrating at times. At the same time however we must focus on the many good things that are happening. We truly are on the crest of a wave, I believe, that is about to wash over the church. It could not come too soon for my liking.

McNair

Juxtaposition

What do you think when you see this object? This object or one very much like it has been in many households in America. Typically you think "infant" as this is a toy for small children that helps them to learn to sort shapes. It is a kind of a cultural icon that people would recognize.
Now imagine that you see a person say 10-12 years old playing with this object. What is your first impression of this person? Do you think that it is cool that this pre-teen is playing with this object or do you immediately assume that there is "something wrong" with this individual because they are playing with this toy? No doubt the answer is the latter. When we juxtapose people with things that typically do not or perhaps even should not be with them, we cause them to bear the associations that go with such a juxtaposition.

This is called using age inappropriate materials with a person. The use of this particular toy will stigmatize a person who is over the age of say 3 who is using it. Let alone, if the person is the only one in a group who is using it.

Now what about this picture which is a page from a Christian coloring book. Imagine that you visited a class that was for adults with intellectual disabilities and they were all sitting around coloring this picture. I deliberately picked this picture because it is a bit more "hip" less juvenile than the pictures in many Christian coloring books.



What would you think about the adults sitting and coloring this picture? I suspect you would think that this is a very unusual adult class as virtually no other adult class sits around coloring pictures. "But the students enjoy coloring!" That really doesn't matter as I know how they will be perceived when they carry around the picture they have colored, they don't. They may be oblivious to the treatment they receive, the stigmatization that goes with being thought of as a child. I know the ramifications, the demeaning, the loss of respect, the way attitudes are affected by simply being treated as if they were a child by those who are supposedly providing them with a Christian education.

Because we understand these things, we must do our best to prevent the negative from happening. Our students may be intellectually disabled, but they are full partners in the blessings of God. I do them no favors when I indicate to people that I think they are children when they are adults.

McNair

"...extension of the processes of control within the capitalist state."

That is how Michael Oliver, the Professor of Disability Studies describes the move from institutions to the community in a 1994 article. He does not see the change as "part of a process of removing some of the apparatus of social control by the state." But an extension of control. I am confident that I don't agree, at least for those individuals with intellectual disabilities that I have known. Perhaps there was more "freedom" within institutions, however, I think chaotic, irresponsible, life without any direction is hardly a desirable alternative to more of a regulated life in the community. His general point, however, I think is well taken. That being that the move from institutions to the community was somwhat of a facade in terms of people truly having their lives changed in terms of approaching more of a typical or normal life. Normal meaning a life like that for the average individual.

However, he doesn't provide an alternative to institutional lives of regulation which is the answer that is really needed. People confined in institutions were "protected" from the community although their protection was not worth the price and was a horror. The shift to community based care was not as Oliver states, a way to save money. If anything it is more expensive if only because of the ratio of care providers to those with disabilities, and the programmatic offerings (good or bad) which are in place.

But his point about extending the processes of control I think I would agree with. Are there capitalist ties, perhaps there are, but I think it is more related to the human condition than it is to our lack of movement toward Marxist ideals as he would desire. I think we see the vestiges of protectionism that occurred at the time of deinstitutionalization which may have provided some level of protection for ex-inmates of institutions, but has now has created new generations of state controlled people, with the venue of control being community based housing/group homes or community based services.

But I wonder about the church. What could the role of the church be, as a free agent not submitting to state regulations in terms of setting up parallel homes or parallel services causing them to be as regulated as any other service. We have tremendous resources within the church, tremendous creativity, but oppressive traditions which do not often allow us to be innovative. We put video screens in the sanctuary and think we are innovative. How about doing something innovative for poor people, or those with disabilities often living in lonliness? One of the beauties of the L'Arche communities as I understand them is the creative model they developed. Yet when they come to America, they struggle to hold on to their identity because of regulations. How might we facilitate community integration that it excludes the governmental regulation, the "processes of control" such that people cease to be commodities that are regulated and be come human beings who just want a regular life?

McNair

Regulated lives, regulated relationships

Well, a light came on for me this morning while I was mucking out the horse's pen. I was blessed with the opportunity to address a group of case workers from the Inland Regional Center on the issue of community integration of persons with disabilities. They were a great group and I had a great time. One point that I make in the presentation is that, particularly for persons with intellectual disabilities, their lives are filled with people who are paid to be with them. That always bothered me because I didn't like the idea that the only way I, as a disabled person, might have an interaction with someone, it seemed, is that if the person was paid. Not only that, those who are paid restrict the unpaid people that I might have access to. They make them do things like get fingerprinted, or other things that change them from friends into regulated (although unpaid) people in my life. The touch of the regulated kills the natural. So I don't like that.

But the light that came on for me, and I recognize it is obvious but a subtle point, is that those who are paid to be with me are regulated. So it is not sufficient that they are paid to be with me, but they also are restricted by their menu of services, how our interactions must be structured, when and where they can be with me, what our interactions will be, and so on and so on. They can be with me when they are acting as a professional human service worker, but cannot be with me when they are acting as a regular person. I can only have a relationship, therefore, with professionals who are experts in understanding me when they are acting as professionals. At least that is what they think. They have been so conditioned by their regulators, that the thought of having personal relationships with people with disabilities, simple friendships, never enters their minds. This is a VERY sad state of affairs. People who have the best chance of understanding me as a person with a disability, people who have the most understanding of my disability and how it will affect social relationships, people have the best ability to advocate for me, people who can demonstrate to others how I can be socialized into regular life through their own invovlement with me, are professionally socialized and regulated into thinking that they cannot have a personal relationship with a disabled person.

As I shared with the group from Regional Center, caring case workers would say, "I am not permitted to interact with people with disabilities outside of work. It is not allowed in my job!" Now that is sad because this agency serves thousands of people with developmental disabilities and the perhaps several hundred caseworkers who have chosen this field as a career feel like they can have no person to person (as opposed to person to professional) relationships with any of them. They are also blinded to the fact, perhaps because of their indoctrination, that there are other people with disabilities in the community who might benefit from a personal interaction with them. On one level, I don't blame them for their oversight. They have been so conditioned in their training and by their handlers in their working life about what their relationship with disabled people should be, they almost cannot imagine personal friendships with these folks.

We have now had perhaps 30 years of efforts at integrating persons with intellectual disabilities into the community. Those who live in group homes are the ones I am particularly thinking of. And in my opinion, our efforts at community integration have failed miserably. There are a lot of reasons for this but let me give you two that I am confident are true. First, professionals in human services, either due to their training, or their personal feelings, feel no personal responsibility for having regular friendships with people with disabilities in their personal lives. As a result, those who would have the greatest likelihood of facilitating integration are not doing it. They are expecting others to do something that they either do not want to do or feel regulated, because of their work, out of doing. If the professionals will not have friendships, why would we expect the average person to have friendships? Second, the church is not the player it should be. This is due to problems on all sides. State agencies, once again because of their regulations I would suspect, feel that they cannot use religious groups, use churches to assist in facilitating integration. The "separation of church and state" is instituted in the lives of persons with disabilities. It is actually foolish to think it might be somehow otherwise. How would regulated people with disabilities, regulated by regulated professionals be expected to do anything approaching natural or normal? For normality to come to the lives of those who are regulated, regulations have to be removed or limited. And then, the church has to step up and be seeking out those who need unregulated, natural friendships. In my own life, I want to be able to stay up too late and be tired the next day if I want to. I want to eat too much if I want to. I want to drink too much coffee if I want to. I want to go places with friends when I want to. I want to be in the community when I want to. I want freedom, in other words. People with disabilities, by virtue of the fact that they have a disability, particularly an intellectual disability, loose their freedom. But the loss of freedom needn't be that way. The more programs are administratively convenient, the more freedom is lost. The more lives are regulated, the more freedom is lost.

What is needed is to step away from regulated lives. More "free agents" need to be in the lives of people with disabilities. People who can go off the reservation in terms of offering the natural relationships and consequences of choices that the average nondisabled person experiences. I am so damned tired of people being told what they can or can't do (can't have a coke, can't walk around, can't talk), having their behavior managed as if they were a child, and expecting me as their free agent friend to participate in behavior management by restricting either my interactions or the things I give to the individuals. I am damned tired of people being regulated for no other reason than the convenience of care providers. I am also tired of care providers who want to move toward normalcy being regulated out of offering regular lives, and into the creation of some morphed, prison like, restricted, unnatural life designed for people. In case you don't know, the life created by human service professionals, me included, sucks in comparision to typical, regular lives. I personally do not want people to try to create a life for me that is dependent on boneheaded regulations put together by some politician or beaurocrat. Just leave me alone as much as you possibly can. If you must interact with me, be my professional, but also be sure that I have real friends as that is what I need to have a fulfilling life, perhaps even more than a trained human service professional. And finally, professionals, think outside of the freakin box! If you are not interacting with people with disabilities, befriending them in your personal life, you are failing them and the society who trained you. That society desperately needs you to step up for the betterment of those whose lives have been devalued by the regulations they live under and the very regulated people who serve them.

McNair

"Not playing with a full deck"

When someone is referred to as "Not playing with a full deck" the implication is that they aren't all there, that there is something that is lacking. I find that with some of my friends with disabilities that they are not playing with a full deck. But not in the sense of lacking something like intellect, or physical abilities due to a disability, but they are not playing with a full social deck of cards. Because of their sometimes devalued status, they lack the social capital to get what they want or need. They therefore play the cards that are often buried in most of our social decks. Because of their sometimes hurting condition (socially and otherwise) cards of strength are not played. Rather cards intended to cause guilt, cards that reflect anger, cards that reveal their lonliness or their expectations. It is easy to have those cards played on you and respond, "What did I do to make you angry?" or "It is not my fault that you are lonely" or "I cannot meet your expectations because I work, have a family, have other responsibilities." It is easy to meet these accusing cards with rejection, particularly if you (like me) are pretty much unaffected by those who attempt to foster guilt in you.

I remember when I taught students with serious emotional problems. They would threaten me and swear at me, and try very hard to get me upset. At times they were successful. But I grew to understand that those attacks were their disability speaking. So, just as I wouldn't condemn a person with an intellectual disability who couldn't do math, I can't condemn a person with an emotional disability who can't do social interactions. It is their disability speaking. In the process, if I am able to keep my composure, they learn acceptance and love and I learn patience and how to love people who are difficult to love. I will tell you honestly, however, that I prefer not to learn those lessons. I prefer to be appreciated and told that I am wonderful. Not to be told that I am uncaring and unresponsive. The issue is not whether my disabled friend is telling the truth about me (particularly when I don't think he is), the issue is what will I do with a person who is not playing with a whole social deck and is left to playing cards that will contribute to his exclusion and ostracism; a fact that he is oblivious to.

On occasion, some of these friends will find an encouragement card, or a gratefulness card and I delight when these are played both for the way that they make me feel, and that my disabled friend who played the card was, in that moment, of such a positive mindset that they were able to find that buried card somewhere, pull it out and play it.

The bottom line of this is that loving other people is hard, particularly hurting people. The relationship does not feel like it is 50-50 in effort or kindness or forgiveness. But once again it relates to who I compare myself to. I as a socially competent, successful person with a jovial personality from a Christian home look pretty good when I compare myself with a lonely, dependent person from an abusive home, experiencing the social consequences of disability and living on social security. I come off quite good in such a comparison. But I am playing with a stacked deck compared to many of my friends. I have more aces than the average person, and they may not even have a face card. Once I realize that, the rules of the game change...for me. To whom much is given, much is expected (Luke 12:48). This verse applies to all areas of life including social interactions and I need to pause, and not respond in kind but in kindness.

McNair