"Points of insubordination"

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

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

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

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

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

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

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

McNair

Secret Girl

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

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

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

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

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

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

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

How was your vacation, Church?

(fcbu)
McNair

Proverbs and Jeremiah

Proverbs 3:5

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

Jeremiah 29:11

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

Oliver (1990) states,

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

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

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

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

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

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

(fcbu)
McNair

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

Romans 12:2 says,

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

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

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

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

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

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

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

McNair

"They'll know we are Christians by our lack of experience"

It struck me this week how inexperienced the average person who attends a church is about persons with disabilities. I know a wide variety of Christians at various stages in their spiritual development who attend various denominations within the larger Christian church, but I always am somewhat surprised about how little they have been around persons with disabilities of various types. Now I wouldn't necessarily have the same expectation of those outside of church, however, it occurs to me that the lack of experience, knowledge, interactions of Christians with persons with disabilities, rank and file Christians, is further evidence of the Church's lack of inclusion of persons with disabilities in local churches. Can you imagine having a church in the Greater Los Angeles Basin, where I live, and having no experience with people of Hispanic descent, or people who are primarily Spanish language speakers? Wouldn't you think it strange for people to recoil at people with that background when the region enjoys such a significant Hispanic population?

Yet the US census tells us that 20 percent of the population experiences a disability, but I can introduce a Christian person to someone with mental retardation and it is an entirely new experience.

As I have said elsewhere, we should be leading the way in reaching out to devalued people with love, and inclusion and respect, and service, but we have missed it somehow, and do not even think it strange that our experience in this area is so limited. It is an indictment on us as a Christian church that we lack experience with such individuals who should be in our midst on a regular basis, at least once a week you would think.

(fcbu)
McNair

NACSPED 2006

March 11, 2006 will be the second annual meeting of the National Association of Christians in Special Education. This year the meeting is once again being held at California Baptist University. We are blessed with an excellent group of presenters dealing with subjects ranging from state of the art special education, to ways to integrate persons with disabilities into the local church, to parents sharing their experiences of joy and frustration with state agencies and schools, and unfortunately the Christian church as well. It should be a great day! Check out the website at http://nacsped.com

I am going to try to rally the forces to continue pushing for a movement of lay professionals to change the church. We aren't doing half of what we might being doing if we made the effort. I was reminded of this this past week. A woman who attends our church who experiences a cognitive disability, moved from her residence in town to a group home in a neighboring community. In that community there are several very large, I mean VERY LARGE churches. I was contacted by the woman who runs the group home about information regarding our church as my friend wanted to continue coming to church. After providing the information I asked the woman whether there would be any others at the group home who would enjoy attending church. To make a long story short, we will hopefully have an additional 10-20 adults experiencing cognitive disability coming to our church.

I was in another neighboring community to pick up a friend at his workshop and was once again amazed as the adults experiencing cognitive disabiities filed out how few of them I knew. I pray that they have a church home somewhere. There are opportunities to reach out to individuals like these, many who are unchurched and would love to have a relationship with the Lord. However, we set our sights too low, and become satisfied with the status quo in our churches. We do some small thing and congratulate ourselves, when God gives us the opportunity to do great things through faith and obedience.

That is the part of this equation that is missing. I have done research myself about the number of churches in my region who have persons with developmental disabilties who attend. The result was 85% which is great! However, there were largely only 1 or 2 per church, and they were at the church because they just showed up at the doorstep of the church. Why aren't churches out looking for those individuals so they can minister to them and facilitate their sharing their gifts. Just based on the US census, there should about 20% of church membership comprised of persons with disabilties, with about 9% of that group having severe disabilities. Is 9% of your church's congregation comprised of persons with severe disabilties? If you have a church of 200, you might expect about 40 persons with disabilities to be in the congregation, 18 of which have severe disabilities. And, I will tell you, if they are not there, it is not because they do not want to come. They are most likely not there because they simply have not been asked.

May God bless us in our efforts to grow an army of lay professionals to change the church. With obedience will come blessing, I believe.

McNair
(fcbu)

Listening to the spirit of the world

A frequent respondent to this blog who contributes under the name "impossibleape" wrote the following (see February 22, 2006 entry).

Our church administrator told me today that if the Holy Spirit directs them to serve the disabled they will but apparently the Holy Spirit has no more interest in my children than the board members do.

You know, I am very skeptical or have become very skeptical of those who claim to have such a connection to the Holy Spirit that He frequently whispers in their ears, particularly when He whispers things which are contrary to the revealed Word of God in the form of the Bible. It appears to me that the spirit they are listening to is attempting to subvert the Word of God. It occurs to me that because the Holy Spirit inspired the word of God, maybe those who claim to be hearing his voice are rather reflecting the voice of someone else who is whispering in their ears. It could be the spirit of this world which is a scary thought. Actually I wonder if the spirit they are listening to is an even more debased spirit than others as the secular world has done much to include and integrate persons with disabilities, particularly in public schools.
In relation to the issues we discuss on this blog, there are too many churches, pastors, leaders, administrators of churches, etc. who are listeing to a spirit of the world. How could one truly be seeking to hear the Spirit of God on this issue and express no interest, no priority? How evil to blame our lack of caring and love on a lack of prompting by God's Holy Spirit? In other words they are saying, "It is the fault of the Spirit of God that I am not caring for persons with disabilities. It is not the desire of God's Spirit that I do so."

Matthew 12:31-32
31 "Therefore I say to you, any sin and blasphemy shall be forgiven men, but blasphemy against the Spirit shall not be forgiven.
32 "And whoever shall speak a word against the Son of Man, it shall be forgiven him; but whoever shall speak against the Holy Spirit, it shall not be forgiven him, either in this age, or in the {age} to come.
Mark 3:28-30
28 "Truly I say to you, all sins shall be forgiven the sons of men, and whatever blasphemies they utter;
29 but whoever blasphemes against the Holy Spirit never has forgiveness, but is guilty of an eternal sin"--
Luke 12:10
10 "And everyone who will speak a word against the Son of Man, it shall be forgiven him; but he who blasphemes against the Holy Spirit, it shall not be forgiven him.

Sure each of us are prompted in various ways to minister and to use our gifts in different ways. However, we are talking about an agent of the Church. The Church with a capital "C" that is saying it has not been guided by the Holy Spirit to respond to a group of potentially hurting people who are in need. I don't know who these leaders think people experiencing disabilities are or where they came from. That perhaps they fall from the sky, or crawl from under a rock. NO, they are parts of families and as the church ministers to families it needs to minister to all the members of the family. The Bible says we are to minister to those who are poor. Do a need a sign from God, or the Holy Spirit to speak to me in an audible voice to minister to the poor when the Bible is replete with allusions to me helping the poor? If a church leader told you that he hadn't received the prompting of the Holy Spirit to minister to the poor, what could you think other than that he is out of touch with God's Word and God's Spirit? If he said God Spirit hadn't directed him to share salvation with all people, only some, what would you think?

No, lets call this what it is. It is disobedience.

(fcbu)
McNair

"We'll take you and not you"

I was hit today with something quite obvious, but I hadn't thought about it in this way before. It struck me that churches/pastors will at times say that ministry to persons experiencing disabilities is not a particular priority. We have probably all heard that at one time or another in the past. But the obvious thing that hit me again today was that I (as a church, pastor, etc.) will look at your family, a family that includes a person experiencing disability and say, "Ministry to you, the person over there experiencing disability, is not a priority for our church." It is not like we are saying ministry to white or black or brown or other entire groups of people is not a priority. We are looking within families and saying that these individuals in your family are a priority for ministry and those others are not a priority for ministry. I first observed this with Christian schools who can be notorious for not serving students who would benefit from special education. But it is even broader than that, actually separating families by prioritizing some members of the family over others.

It also struck me that the ones we don't choose to serve are potentially the more difficult ones to serve because they don't fit the way in which we have designed services, designed ministry. The classic example for me which illustrates this point is the church who wouldn't allow a high school student who used a wheel chair to be a member of the youth group because the youth group met on the second floor of a building with no elevator. So rather than design services which meet on the first floor, or develop access to the second floor, we choose not to include those who do not fit our designed ministries.

It is interesting that the Department of Rehabilitation used to have a criteria, I guess still does, for receiving services. The criteria was that you had to be able to "benefit from services." So if you needed services for an extended period of time or forever for that matter, you were deemed ineligible because you couldn't benefit from services. You could potentially benefit from services, just not those provided. Ultimately through the novel thinking of Madelline Will, the past Assistant Secretary of Special Education for the federal government, the definition of services to include ongoing services opened up the Department of Rehabilitation to those who could benefit from services over the long term. The people didn't change, the criteria for delivery of services and the types of services provided were changed.

This is a change that needs to find its way into the church. There are those who would argue that people experiencing disability cannot be integrated in to existing church programs. This excuse is used as a reason for exclusion. In my mind, the answer is not exclusion, it is the redesign of services such that those who might be able to benefit would indeed benefit. Don't tell me that you will not serve people because they don't fit your structures, change your freakin structures. A discriminatory church which has been in a discriminatory rut for perhaps over a century will not change easily, but it is not the people who have the problem, it is the discriminatory church that needs to change.

This is hard coming because it requires a great deal of courage on the part of the leadership, and that courage is not as prevalent as I wish it would be. Ministry is hard and it is about time that the rank and file church attender learned that. Rather than dodging the difficult issues of ministry for fear of making attenders uncomfortable, we should be saying "We choose to include people experiencing disability, and it will make us change the comfortable ways we have been doing things to date." I wonder how many rank and file church members think ministry is easy, because they haven't been challenged to do it. I wonder how many would embrace the changes that would be required to truly include all of the people who would desire to attend church and participate in the programs of the church.

McNair
(fcbu)

Jeremiah 29:11

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

Those were the words of God to the exiles. People who felt abandoned and displaced, by and large by no fault of their own. I believe the Lord wanted to encourage those people by promising them a future. He also had plans "not to harm you" which was something perhaps that they were unsure of because of their life experience to date. He wants to give us hope (which is given through Jesus) and a future. I see people with disabilities in this verse. It seems a word of reassurance to those who might not be entirely sure of what God is up to on the basis of their experience.

As is typical, in His kindness God knows of our wavering trust and gives us a shot of confidence and hope. How could one be more encouraging than to say, "you have a future" and "I have plans for you" and "I have plans to prosper you."

This verse has been an encouragement to me and I don't face the issues of disability, personally, that many face. I hope those who are feeling overwhelmed by their disability or the discriminatory effects of their disability will find a "hope and a future" in this passage.

McNair
(fcbu)

"Yes Virginia, there is a Santa Clause"

I was recently talking with some colleagues about how there are many apocryphal stories floating around, and have been for years, which embrace an unjustifiable spirituality about who people with disabilties are or are not. By unjustifiable, I mean from a Christian perspective based upon the Biblical narrative. I focus my comments on Christians, who claim to believe the message and narrative of Christianity, and then cling to unjustifiable spiritual claims. In being critical of these stories, a friend disagreed saying that the stories were comforting and encouraging to he and his family at the birth of their family member with disability.

No doubt, that those who create such stories are probably motivated by the thought of being encouraging to the parents and families of persons with disabilities, but I would rather hear the truth. Please don't tell me that there is an Easter Bunny no matter how good it makes me feel, if there really isn't one (there isn't is there?). Also, don't tell someone that their child with down syndrome is an angel, because I know that he is just a person like me. Don't tell me that he has something special to do, unless you are telling all the other children the same thing, because we all are unique and all therefore have special things that we alone can do. But those with disability are not any more special than anyone else. They are just people. They are not heroes, or angels, or devils, or object lessons for the nondisabled. They are not demons, or sub-human animals, or to be considered objects of dread or pity, or holy innocents (see Normalization by Wolfensberger), or any other notion you might come up with other than that they are people.

Now, some may do heroic things or angelic kinds of things or even evil kinds of things, but that is because they are people like you and me and we sometimes do heroic things and angelic things and evil things.

So it may make you feel nice to think that there is a Santa Clause, but there is no Santa Clause. We jokingly tell our children that they will get nothing from Santa Clause this year, nor have they gotten anything from Santa Clause ever. To say otherwise, particularly to a child, is an untruth...an untruth perhaps shared out of kindness, but an untruth nonetheless.

But we are not dealing with children when we are attempting to answer the questions of parents, adults, who have had a child with disability born into their family. Yet we must also clearly understand what the truth is so we can share it accurately. That is where church leaders need to step up to the plate so that Christians are not misinformed. But then, I wonder what percentage of church leaders know the truth in this area? I wonder how many churches will advertise that next week's sermon topic is, "Yes Virginia, there is a Santa Clause?"

McNair
(fcbu)

A "replacement narrative"

A friend and colleague of mine, Arthur Seale and I have been in discussion about the notion of a replacement narrative. That is, a story, a narrative to replace the one which guides people socially in their day to day lives. For the Christian, the replacement narrative is what she/he learns from the Bible. The teachings of the Bible are prescriptive social constructions which in many ways replace the social constructions we were raised to believe by our society. For example, we might have been taught as a child that if someone hits you you hit him back. The biblical replacement narrative would perhaps say you should turn the other cheek.

This notion of a replacement narrative really came home to me this past weekend as our pastor discussed Romans 12. The passage says,

Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. (Romans 12:2)

I wondered about this in terms of the narrative the church is currently working under relative to persons with disabilities. I hate to say it, but in many ways, the society reflects more of a biblical construction of disability than the church does. However, generally we do have a lot to offer the world, and we must not conform to the patterns of this world but renew our minds.

To what extent does the church reflect or contribute to negative social constructions of persons with disabilities, and, I would argue move away from a truly biblical narrative about who people with disabilities are and Christians and the Christian church's responsibility towards them? I even wonder at times whether the church knows what the biblical replacement narrative about disability is.

Anyway, that is what Arthur and I are chewing on. Your input is invited.

McNair
(fcbu)

Rev. Dennis Kingsland

A co-laborer with us in working to open churches to persons with disability died this past week. I only knew Rev. Dennis Kingsland for a few years, and unfortunatley, only in contexts of working toward changing the church in areas of disability ministry. Dennis headed up the Inland Empire (Southern California) advisory board for Joni and Friends of which I am a part. He was passionate about people with disabilities and passionate about seeing people gain faith and understanding of the Lord.

The image which was repeated at his memorial service yesterday, was that Dennis was like the horse in the starting gate, struggling to get moving, desparate to go forward. As the disease which ultimately took his life progressed, he was debilitated, but was always saying that "I wish I could do more." He would even apologize for his health condition to those around him, because he wished, like the horse in the starting gate, he could bust out and really push ahead.

I will never forget a conversation I once had with him on the campus of Cal Baptist University. We were talking about some of the impediments to churches moving forward. Dennis as a pastor himself, founder of a church, leader in his denomination, and pastor emeritas told me that pastors are often the bottleneck in opening churches to persons with disabilities. Although I guess I already knew that, to hear it from a pastor of his stature was a revelation to me. Based on that conversation, I came away realizing that at least in the short term, changes in the church are probably not going to come from the leadership of the church. We needed a movement of lay professionals to come in and challenge the discrimination which occurs in the church. We particularly needed people in special education who are also Christians. Based on that conversation, I began to ruminate about what I could do to facilitate the development that movement of lay professionals. Ultimately myself and others came up with the professional organization we started called the National Association of Christians in Special Education. When this organization was birthed a little over a year ago, I remember Dennis being enthused about the idea. It was a way to potentially break open the bottle neck and move the church on a path which should have been a 4 lane highway by this point in time.

On a personal note, Dennis was always very encouraging to me personally. Have you ever met someone where you felt you had their favor? Dennis never did anything specific for me other than stimulate my thinking, and listen to me, but I felt as I was one of his favorite people (I suspect there are hundreds of people whom he made to feel that way). That is another thing that I will always remember about him. That is also something I hope I can emulate about his life as well. To be with someone and to feel like you are loved by him or her, that you have their favor must have been what it was like to be with Jesus himself, which, by the way is where Dennis is today.

McNair
(fcbu)

Why healing?

When you think about why there might be persons who experience disability in the world, typically you come up with two types of responses. The one states that people are disabled by design. That is, God made them that way. It is the "who made man's mouth" argument that God gives to Moses when he doesn't want to lead because of his apparent poor speaking ability. The other side is the perspective that along with disease and death, disability entered the world at the time of the Fall of man. Prior to that time, there would be no disabilty, by design or otherwise. One wonders about the range of creativity God might have used at that point in areas like memory and other aspects of cognitive functioning to the point of a level of functioning being what one might call a disability.

Anyway, the question which I have been considering lately, is that if God created people with disabilities by His design, that is He made them that way, why would Jesus go to the trouble of healing many of those who came into His life? If they were disabled by design, and that was just another creative aspect of the creation, he might as well as changed the hair color of the Middle Eastern people from black to blonde, or their ethnicity from Middle Eastern to Caucasian.. If disability is a natural part of God's creation by design, why heal? God didn't heal Moses' mouth.

Somebody smarter than me needs to wrestle with these issues to provide a greater understanding of disability.

Anyway, something to think about.

McNair
(fcbu)

"decisions to continue or terminate are never medical decisions"

I recently reacquainted myself with an article by Roberts, Stough and Parish, written in 2002 entitled, The Role of Genetic Counseling in the Elective Termination of Pregnancies Involving Fetuses with Disabilities (published in the Journal of Special Education). I want to give you a few quotes from the article, interspersed with some of my comments. The authors state,

“most prospective parents seem to consider Down syndrome as involving severe mental retardation. In actuality, 90% of all individuals with Down syndrome fall within the mild to moderate range of fuctioning.”

The perception of who persons with Down syndrome are, has been one of the greatest misperceptions. It has taken on the status of "common sense" as social constructions often do. It has been reported that nearly 90% of babies with Down syndrome, when diagnosed prenatally, are aborted.

“A woman’s intention to terminate or continue a pregnancy did not appear related to her overall level of knowledge about disabilities…as the level of knowledge increased, the choice to continue the pregnancy was more likely…The women were asked if they had been encouraged to meet with the parent of a child with a disability during the prenatal screening process. The majority of women (91.3%) indicated that they had not been encouraged to meet with a parent by either the genetic counselor or any medical personnel”

Medical professionals and geneticists in particular I would bet have little knowledge about the day to day lives of persons with a variety of disabilities, including persons with Down syndrome. Yet they are in the position of influencing vulnerable families about decisions relative to aborting children with Down syndrome. I have mentioned elsewhere in this blog that the only suffering most people with Down syndrome face is that of discrimination (beginning with the medical profession at the point of prenatal diagnosis). To address the societal discrimination persons with Down syndrome face, with medical alternatives is entirely inappropriate. The group who is discriminated against avoids discrimination by having their lives taken, not by changing the society.

The article, also indicated that 72 % of participants had some Christian affiliation, yet 0%, NONE, NO ONE, reported the church as one of the “Sources of information women viewed as helpful during the genetic screening process.” In 87% of cases, “doctor recommended” was most often the influence in seeking genetic counseling. Can you imagine if the church celebrated loved and accepted people with Down syndrome? Prenatal diagnosis would signify not a terrible tradgedy with the only seeming alternative being abortion, but a new opportunity, a new adventure for the family. In particular, if the church were there being supportive, understanding, it would be a great blessing not only for the family but also for the church and the larger community.

“A woman’s intention to terminate or continue a pregnancy did not appear related to her overall level of knowledge about disabilities…as the level of knowledge increased, the choice to continue the pregnancy was more likely…The women were asked if they had been encouraged to meet with the parent of a child with a disability during the prenatal screening process. The majority of women (91.3%) indicated that they had not been encouraged to meet with a parent by either the genetic counselor or any medical personnel”

Such suggestions to seek out knowledge are probably not going to come from institutions who support abortion of any child as an aspect of choice, particularly a child with Down syndrome. But what if individuals with Down syndrome and other disabilities were present in the church in numbers reflective of the community. What if parents and family members of persons with disabilities were known to people in the church. Would that have in any way stemmed the decision to abort because the “level of knowledge” had increased.

“Women who had knowledge of resources and programs that assist with the education, training, and care of a child with a disability were more likely to consider continuing the pregnancy. It may be that as women become more informed about the associations, agencies, and individuals available to assist people with disabilities, they start to view the task of raising a child with a disability as less overwhelming.”

What programs is the local church providing generically, that are present in all churches, that would in any way cause prospective parents of a child with Down syndrome to consider continuing the pregnancy? This article never mentions churches as any kind of attenuating agent in the decision making of prospective parents. Can you imagine if all of the Christian prospective parents in the study stated, "We are going to keep our baby with Down syndrome because of the way the people with disabilities and their families are enfolded and celebrated within the Christian church."

“However, most women reported that they did not receive information about disability resources or quality-of-life issues from their genetic counselors. In addition, they did not believe that their counselor presented them with both the positive and the negative aspects of having a child with disabilities. This finding suggests that pregnant women make decisions based on limited information even after participating in genetic counseling."

Where would someone go to gain such information? What if the church became a clearinghouse for programs and services which would paint disability in a positive light? God asked Moses, "Who makes man's mouth" in response to his complaint about his inability to speak. It is arguable that God makes persons with Down syndrome. We as a church, however, don't seem quite as happy about that fact as we might be. We have failed in celebrating the diversity of humanity to the point that prospective mothers would perhaps reconsider abortion of a child with Down syndrome. What information, experience does the church provide about persons with disabilities and their place in the church and the larger society? People are dying because people think they will have a poor quality of life. How does the church contribute to the perception of someone having a good or poor quality of life?
The article cites Rothman (1993), as making the following statement:

“decisions to continue or terminate a pregnancy are never medical decision. They are always social decisions”(Rothman, 1993, p. 63)

Does the society of the Church contribute positively or negatively to the social decision making of people? Whether they are Christian or not, how does what we, the Church do, to influence decisions about whether to abort or not abort a child with a disability?


McNair

Down syndrome music video

I have an idea for a music video which I am happy to share with any interested rock band. Here goes...

The video begins moving between scenes showing 10 different persons with down syndrome engaging in various activities typical to their lives. So for example
1- Girl eating popcorn and watching TV
2- A young man coloring in a spiderman coloring book
3- An adult man really enjoying a burrito
4- A woman holding and rocking a baby on her lap
5- A woman working at a sorting task in a sheltered workshop
6- A man sitting at a baseball game in team attire enjoying a game
7- A baby lying in a crib drinking from a bottle
8- A man bowing his head in prayer at a grave site while others walk by
9 + 10- A couple giving each other a kiss sitting on a bench in a park

The camera jumps between these people enjoying regular lives, perhaps fading in and out with close ups on faces so there is no doubt that the people have down syndrome.

Then out of nowhere, two people come in and grab the girl watching the TV and take her down into a basement where they hastily lock her in a room, fade to black. The coloring book is taken and the screen fades to black. The burrito drops from the hand and falls to the plate, fade to black. The baby is taken gruffly from the girl who looks up sadly, fade to black. The camera pans through the workshop which is empty, fade to black. The seat at the baseball game is empty, an obviously pregnant woman comes and takes the seat, fade to black. The same grave site appears, but no one is praying, people just walking by. The couple are separated gruffly fade to black. The crib stands alone for what seems an eternity. As the screen begins to fade out, text come up which says, "90% of people with down syndrome are diagnosed prenatally and their lives terminated." The picture then comes back and almost suddenly, a baby with down syndrome is laid in the crib fade to white.

McNair

Moses and his mouth

One of my students provided me with an interesting perspective on the passage in Exodus 4:10 (LITV). The passage states,

And Moses said to Jehovah, O Lord, I am not a man of words, either from yesterday or the third day, nor since You have been speaking to Your bondslave. For I am heavy of mouth and heavy of tongue. And Jehovah said to him, "Who has made man's mouth? Or who makes the dumb, or the deaf, or the seeing, or the blind? Is it not I, Jehovah?"

There are many conclusions which might be drawn about who people with disability are, not the least of which is that they are made by Jehovah. However, I found it interesting that God comes to Moses, a man who it appears both Moses and God agreed had some form of a speech impediment, and asks him (Moses) to speak for Him (Jehovah). God goes to a person with a disability and challenges him in the area of his disability. Later in verse 15 the passage says,

And you shall speak to him, and you shall put the words in his mouth. And I will be with your mouth, and with his mouth, and I will teach you what you shall do.

Other than noting that God is a special educator, He is consistent in providing people to come alongside of persons with disabilities so that they can move beyond themselves. No doubt in addition to looking for an excuse to not do what God wanted him to do, Moses had defined himself as this person with a speech problem. He was probably teased as a child, felt uncomfortable around women, and all the other things which accompany such a disability. But God didn't see him in that way.
Moses also must have either known that God made him the way he was, or perhaps he wasn't sure and was wondering how God would respond to his complaint about his disability. God, however, leaves him no doubt. "Who has made man's mouth?" Now apparently, God didn't make just one mouth, but a variety of mouths, as he recognizes that Aaron's mouth does not face the same issues as Moses' mouth. It appears that Moses' mouth and Aaron's mouth are simply within the range of mouths God made.
However, the point I wanted to make here is to those who might read this blog who experience a disability. God may choose to challenge you in the area of your disability. This doesn't surprise me as it is a scriptural principle that God works through weakness such that His glory might be seen. Perhaps disability is an opportunity for the Christian who experiences disability. It is a chance to show God's glory through weakness. It is also an opportunity for those around that person with disability to also demonstrate God's glory by "working the works of Him who sent me(see 4/1/2005 blog entry).

McNair
(fcbu)

The ultimate in discrimination

My friend and colleague, Rev. Bill Gaventa recently recommended a book to me and I am glad he did. It is, Hans S. Reinders' The future of the disabled in a liberal society: An ethical analysis (Notre Dame Press). I am only about half way through it, but I have thoroughly enjoyed what I have read thus far. For those of you who do not like to read philosophy, it is a bit thick, but it is definitely worth the effort. I want to provide an extended quote from page 46.

The context is the attempt to try to understand the reasons for abortion of children with disabilties in the context of "prevention" of genetic disorders.

The aim of the proposed terminology is to suggest that, in principle, we can attack the consequences of a disease from two sides: not only by combatting the disease with the diagnostic and therapeutic means that medicine provides but also by changing the social and cultural environment that makes for the cause of disability or handicap. The latter may be the objective of social and political reform rather than of medical intervention. The distinction between types of genetic disorders is important, then, because it generates different moral arguments. Preventing the birth of a disabled child because its life will be devalued as abnormal is surely morally different from preventing the birth of a disabled child that will suffer from serious illness. Even if in both cases their lives may be burdened by distress to similar degrees, their distress is very different in kind. Furthermore, being devalued as abnormal in our society may be seen as constituting a case of discrimination, which means that prevention in that case takes on a completely different meaning. For it can be argued, given these different meanings, that in some cases prevention is a dubious response to a social evil. At least that is what I think many people in our society will be lieve to be true. Instead of confronting the agents of discrimination, one aims at preventing its victims from being born. Consequently, people in our society may be worried about preventing disabled children for reasons of abnormality, even if at the same time they may accept that parents decide not to have a mentally disabled child in order to avoid serious suffering due to illness. If the cause of the suffering is society rather than nature, the more appropriate response would be political rather than medical. This indicates in which sense disabilities and handicaps caused by different kinds of genetic disorders may raise different sets of moral questions. (emphasis added)

Reading this, I can't help but come back to the notion of the church's protective function. We have the ability to provide succor with the potential effect of normalizing the lives and experience of persons with disability. Or by chosing to ignore or not prioritize ministry to persons with disability, we can be complicit in the discrimination which leads to practices such as abortion of such people. As Reinders states, the solution to aleviating the suffering of a significant group of persons with genetic disorders/disabilities is of a political or social nature. If the church would normalize persons with down syndrome, for example, the arguments for prevention of these lives through abortion would be harder to substantiate. We would also be all that we should be to the community, potentially having a dramatic effect on the understanding of who people with down syndrome are. People would have to say that persons with down syndrome suffer from discrimination, but only in environments outside of the Christian world. Within the Church and its agents, they are just people.

McNair
(fcbu)

disabled Body of Christ

A student in one of my classes recently shared the passage from Corinthians about the Body of Christ. The passage states,

The eye cannot say to the hand, "I don't need you!" And the head cannot say to the feet, "I don't need you!" On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has combined the members of the body and has given greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. Now, you are the body of Chirst and each one of you is a part of it (1 Corinthians 12:21-27).

We touched on this passage back on March 30th. However, thinking through the notion of the body again, and even the title of this weblog, it occurred to me that we are a disabled body. The Body of Christ is a disabled body. Why is that? I would argue it is because we have selectively not included or even have cut off parts of the body, people with disabilities who would desire to be participants in the Body of Christ. It is as if we as the Church (using the Body of Christ metaphor) are limping around without a foot, or are seeing with only one eye or are missing the fingers of one hand. In the same manner that a person might become used to a missing aspect of their anatomy, the Church has become used to functioning without all of the members of it's body. It would be interesting to try to determine whether there was a point in the life of the Church when we actually 'cut off' that part of the body, or whether it was in some way 'born' without all their body parts. To push the metaphor further, the Church might not know what it is to walk with two feet or see with both eyes or have a hand with all of the fingers intact. That is what I have alluded to in the past in this weblog regarding that we really don't know what the Church could be if we included all of those who would choose to participate. We have grown used to being a disabled Body of Christ, grown used to being an incomplete body.

Can you imagine cutting off your foot because it wasn't a priority to have it as a part of your body? Can you imagine thinking, "I will get by with one eye because it will be too expensive to try to live with two eyes." To me, that is what we as the Church are doing. We are by choice deciding to be a disabled Body of Christ that does not include all of the parts.

McNair
(fcbu)

Complicity: the state of being an accomplice, as in a wrongdoing

That is the way The American Heritage Dictionary of the English Language defines the word complicity. In atrocities, in discriminations, in poor treatment of the past the word might be used to describe the church. We look back on those times of complicity in the past and wonder how the church could have been so blind as to have missed the great evil, the significant injustice it was participating in at the time.

We congratulate ourselves at the fact that "we would not have let that evil happen!"
I have often wondered what the blindspot of the church is today. What is the evil we are overlooking which we might stand up against? I think I might have the answer.

As I described in the last blog entry, there is great excitement that doctors may now be able to identify up to 90% of persons with down syndrome prenatally, and do it earlier. They claim this will save mothers the embarassment of being detected as pregnant or the psychological dissonance of having felt the first kicks of the baby before killing it. Church people, leaders included, are often so oblivious about who persons with down syndrome are that they cannot even engage in a discussion. As a result, they mourn the birth of a child with down syndrome in the same manner as someone without knowledge. Down syndrome is an unknown to them, though it needn't be, so they fear it, perhaps even fear those with the disability. But if those people were in churches, we might not only loose our fear, we might learn to see them as a blessing. I can tell you that I do!

I am not the parent of such a person although I would not fear being such a parent. I don't know how many people with down syndrome I have known, maybe 50, not a lot of people but I certainly don't fear them or their differences. I have actually come to love them and am drawn to them. They are sweet, decent people who enjoy life. They will rejoice or mourn with you with heartfelt empathy. They will go to school, maybe get a job, and live on their own or with limited support. You wouldn't have to try very hard to convince me that a great sense of humor is a characteristic of the syndrome. However, we, the church, fear what we don't understand, and are too damned lazy to find out what it is that we fear. If we did take the time, our perspectives would change.

The degree to which the church has not participated in dispelling falsehoods and telling the truth,
the degree to which the church stigmatizes and excludes people from the typical programs of the church,
the degree to which the church says that such people are not a priority for ministry to the point of putting it into their budgets,
the degree to which the church doesn't go out of its way to bring people with down syndrome into its fellowship,
the degree to which national church leaders are not speaking out against the evil of prenatal diagnosis and abortion of children with down syndrome,
is the degree to which we are complicit in this evil.
We are complicit in this evil.

The good news is that God is a forgiving God. He is forgiving if we denounce our complicity and repent. It starts with you (as trite as it sounds).

McNair (fcbu)

Down Syndrome Genocide

In a fascinating article, the National Review discusses an article in the Washington Post entitled, "Down Syndrome Now Detectable In 1st Trimester: Earlier Diagnosis Allows More Time for Decisions." Couching the issue of prenatal diagnosis and abortion as a women's health issue, the article states, "This is a big deal for women. It's going to have a big impact on care for women, not just in the United States but throughout the world." In a crazy example of doublespeak, the genocide of persons with down syndrome is a solution that is going to have "a big impact on care for women." This is not the genocide of an entire class of people, having a particular characteristic, which the Washington Post article didn't even attempt to overstate, "The syndrome results when a baby has three, rather than two, copies of the 21st chromosome, causing distinctive physical features, developmental problems and an increased risk of a variety of health problems that usually shorten the child's life span." The taking of down syndrome life is so prevalent, that euphemism (the substitution of an inoffensive term for one considered offensively explicit) in terms of describing who persons with down syndrome are is unnecessary. We are taking the life of a whole class of people because they have, "distinctive physical features," "developmental problems," and an "increased risk for a variety of health problems." Step back for a moment and think about this. If this doesn't cause you great concern, it should. People with down syndrome are some of the nicest people you will ever meet. But we choose to kill them, to wipe them out in the name of a "big impact on care for women." It is sick.

In response to this article, the National Review online posted its own editorial entitled, "Defining Life Down: Are we okay with eliminating a class of humans?" This article does a pretty good job in defining the issues and confronting us with the reality of the situation, we are "eliminating a class of humans."

Through training I have received from the Syracuse University Training Institute or Human Service Planning, Leadership and Change Agentry I have become sensitized to the issues. We are on a fast track to increased devaluation and termination of the lives of persons with disabilities. But my real question is, "What about the church?"

We, the Christian Church, are embracing the sins of the culture in direct opposition to the obvious and "most central themes of the Scriptures" (as Jim Wallis states). "Social location often determines biblical interpretation (also Jim Wallis). Our social location is anywhere where people with disabilities aren't. No wonder we think we can exclude them with impunity in the face of God's commands.

McNair
(fcbu)