“During times of universal deceit, telling the truth becomes a revolutionary act.” George Orwell

Wednesday, March 30, 2005

I don't need you

Think about what has been happening in the Schaivo case as it relates to other persons with disability whose lives might be determined unworthy of continuance due to a quality of life determination. Paul wrote,

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).

How often in the church, the household of faith, the body of Christ, do we turn to our neighbor and say, "I don't need you!" Our neighbors are defined as people who "seem to be weaker." Interesting caviat. They "seem" to be weaker for whatever reason, however, the Bible indicates that somehow these persons are "indispensable." It would appear to me that they are weaker, justifying my statement, "I don't need you!" but in actuality, they are "indispensable." It also says that the parts that "we think" are "less honorable we treat with special honor." Another caviat in the statement "we think," the implication being that although we think them less honorable, they are to be treated with special honor. God has "given greater honor to the parts that lacked it so there can be" get this, "no division in the body, but that its parts should have equal concern for each other." No division, equal concern. Equal concern about or for what? It would seem equal concern at the most basic level for life.

In the Schaivo case, they have music playing, flowers around her and a stuffed animal in her arm, but they are starving and dehydrating her to death. Is this having "equal concern for each other?" Who are we comforting with these amenities? Supposedly the woman's life is being taken because she is in a persistant vegetative state and would not appreciate such things. Please, if there is any notion that these things are comforting to her, reinsert the tube as she has the ability to appreciate music and beauty!

It occurs to me, that the church has for so long excluded people with disabilities that it has less problem than it perhaps should when a disabled person is starved to death. Or even if it has concern, it seems hollow in light of its lack of effort to include persons with disability prior to the point of life sustaining measures for a brain damaged person. If the church truly has concern for such individuals, why aren't there more brain damaged persons going to church? A pastor friend of mine has said that for a church to have a ministry that includes persons with down syndrome for example (as that is the form of disability most often tested for via amniocentesis in efforts at "prevention" of mental retardation leading to abortion), we give teeth to our arguments against abortion. We say, "Don't abort those children and bring them here, to our church to become a part of our church family, after they are born."

But I don't see as many persons with down syndrome attending church as are represented in the community. Instead, I hear horror stories of churches discriminating against persons with down syndrome and other disabilities and their families.

The church is a part of the problem in this whole issue. Disability has been constructed by the church in such a way that we feel comfortable saying to a disabled person "we don't need you." I look at this incident and am concerned, but I look at what might be the result of 2000 years of the church's lack of concern and am really concerned for what the future may hold.

Would we as Christians even miss, would we even know they were gone, if persons with mental retardation, for example, were systematically starved to death? We see Ms. Schiavo being starved to death and we become greatly concerned about the life of a person with a severe disability. But our track record says that really, as a whole Christian church, we don't seem to give a damn about persons with disability.

Like participants in a liturgy, we stand before the Lord, and tell those with severe disabilities who are not in our midst, "WE DON'T NEED YOU!" That is, until we are confronted with the natural results of our indifference.

(from cbu)

Thursday, March 24, 2005

What to make of current events

I must admit that the recent events regarding taking the life of a severely disabled person concern me. However, it isn't just the events regarding the woman in Florida, it is also the discussion which surrounds her life and the battles of those around her. For example, this morning a bioethicist spoke of how the practice of removing a feeding tube occurred commonly across the country. He specifically referenced it happening to aborted infants who were born alive and children born with down syndrome. If you recall, the starving of children with down syndrome was an issue during the Reagan administration with the whole baby doe affair. I am aghast to think that our medical profession does such things.

Now I recognize that people should have a right to determine whether or not extensive efforts should be made to keep someone alive, particularly someone who has specifically requested that such efforts should not be used. However, feeding someone has now become included in extensive efforts. People are also permitted to make decision about others by caviat, without any documented permission given.

When people have lived life without the experience of the differences referred to as disability, they think they know how they would respond should they at some point experience disability. However, that is like trying to think about what it would be like to be a cat when you have been a dog all of your life. You think you know what you would do as a cat, but you really don't know, and you may find that your will to live as a cat is much more than you ever expected when you were still a dog.

Another concern to me is where these decisions about the life of another will go. If I have a severe disability, do I have a poor quality of life when the quality of life I have is the only one I have ever known? Can I look at a person in desperate poverty and say that they have a poor quality of life? Can I look at a person with down syndrome and say they have a poor quality of life? I have gone out of my way to ask quality of life questions to persons with disability, and almost without fail the response is that they feel they have a good quality of life. I have also at other times in this blog referred to the interview Christopher Nance did with Ray Charles. Nance asked, "What is it like to be blind?" Charles' wise response was, "What is it like to not be blind?" Quality of life is in the eye of the person having the life experience. . .not those observing the person.

We must be very careful about projecting our perspectives of poor life quality on others who may not agree with our point of view, or may agree at one point and not at another. Joni Eareckson relates the story of how she would have said that she wouldn't have wanted to live with the differences she now faces prior to the accident that changed her. However, now having become accustomed to her life, she feels she has a good quality of life.

So, although I don't want to get into people's business when such decisions are on the line, I am very worried that our laws allow for starving another to death on the basis of subjective notions of disability and quality of life. Persons with severe disability are easy targets.


Wednesday, March 16, 2005

Bottle necked pastors = layperson movement

I was asked to be on an advisory board for a disability advocacy group. It was interesting as yesterday, I met with the director and their idea is to develop lay people to influence the church. Lay people/leaders to open churches with disability programs. He said that the pastors of the churches can be the "bottle neck" in getting programs into churches for persons with disabilities. Wow.

But, you know, it makes sense that the exclusion of persons with disability has gone on for so long, that it is institutionalized to the point that pastors can be part of the problem. The church structures themselves, theology, leadership, and as a result rank and file members are the problem. I don't think we can rely on seminaries or Christian colleges (at least in their current form) to cause the changes that will result in churches being open to persons with disability. It might actually have to be a lay movement such as the one described by my lunch partner yesterday, that causes changes in the church.

Lets do it!

Interesting stuff to think about.

(from cbu)

Tuesday, March 15, 2005

Inclusive worship

I have often wondered about the concept of worship; what it is, how it is done, among other things. Recently questions about who can participate in worship enter my mind. In my church, worship seems very much performance oriented. The band plays loud, and the participation of the congregation is often hardly heard. Then the sermon is given and the expectation is quiet attention.

There are many people who cannot perform with the excellence that performance style worship requires so they would never be able to participate there. Even as audience members they can't sing because they can't read the projected words. They don't even clap in a very timely fashion. They are able to raise their hands and participate in other movements. During worship itself, they at times speak too loud, or ask for assistance in finding a Bible passage, or get up to use the restroom. They don't always look or dress like the rest of the congregation. They also sometimes don't smell like the rest of the congregation. As a result, they have at times been asked to not be a part of the congregation.

But the style of worship in many of todays churches which isso fragile, so excellent that it excludes those who are different belies something about the church. I would argue that if the style of worship is not inclusive of the range of people who would like to be involved in worship, then the style of worship needs to change. I don't recall where in scriptures that social skills are a requirement of worship participation. But I honestly believe that we have excluded persons with disability from the church for so long, that the traditional style of worship has grown to be one that excludes their participation in its very design.


Monday, March 14, 2005

Patronizing Good Will

Oftentimes when describing work with persons with disabilities, or even in introducing persons with cognitive disability to those without disability, I have the feeling that I am the recipient of a kind of patronizing good will. Whether it is based on some notion of political correctness in relation to the particular enviornment one is in, or a reflection of some general social etiquete of how one is to act or speak when the question of mental retardation arises, people move into this sentimental seriousness about persons with disability. Their speech belies good will of language on their part, but there is also a laziness about it. It's like they reverence the challenges of the families of those persons and what they suspect is the experience of the persons with disabilities themselves, however, they speak out of ignorance; a kind of lazy ignorance at that. Its like the response many special educators joke about that they receive when they say they are special educators. Without fail, others will respond, "You must have a lot of patience." Ask any special educator and he will report that he has heard that response.

It seems when confronted with disability, the general public is often so unfamiliar with persons with disability and their experiences that they respond with the pat answers, the patronizing replies which have been used over and over again. It is good will, but it is patronizing and unreflective of knowledge. But apparently they have heard others use those mindless replies and they appeared to sound heartfelt, kind and maybe even intelligent. So they repeat them as well. And so on and so on. In the end, we have social constructions reflected in the trite language used in response to the unknown of disability.

Now it is obviously better that the mindless responses of the general public should be patronizing good will over something negative, however, oftentimes the pat answers convey negativity which is just below the surface. I use positive speak in public environments about persons with disability, however, in private speak or when challenged to put the positive into practice (drop a group home in the neighborhood, for example) the positive is quickly replaced because the "due diligence" has not been done to actually support the positive.

So when confronted with trite, good speech about persons with disability, ask the questions that will cause the speaker to either back up the speech with actions, or at least go a bit deeper in his understanding of disability.


Sunday, March 13, 2005

Make disability ministry a priority

I am aware of a ministry to adults with developmental disabilities that has been in existence for nearly 40 years. My wife, Kathi, and I were involved in the ministry for 5 years ourselves, nearly 20 years ago. Housed in a large church in Pasadena, California, the forward thinking woman who started the ministry is retiring from it, and as a result, it is at risk of no longer being in existence as no one, including the church leadership, has stepped forward to take her place.

At what point in the life of a ministry will a church embrace and adopt that ministry to the point of investing in it with resources, a pastoral position, etc.?

I wonder whether the ministry at my own church would survive if Kathi and I were no longer involved in it? This question about ministry survival goes to the heart of the church, the priorities of the church and what it is willing to invest in. Nearly any church will have singles ministry, and children's (non disabled children's) ministry, and ministries to singles and seniors. Very often there will also be pastoral positions linked to these ministries. The hiring of a pastor is a statement on behalf of the church that this area of ministry is a given, a priority. Such churches don't expect or depend exclusively on lay volunteers to make such ministries go. They don't wait for a lay person to step forward to make a commitment to the ministry before they will start it. The church leadership (pastors, elders, etc.) have decided that the particular area of ministry is a priority to them and they make it happen.

For example, my own church recently made the decision to commit resources to beginning a "Spanish language" ministry to persons living in the town who are largely Spanish speakers. They invested in buildings, hired staff, including a pastor, and have devoted significant energy to the project.

My question is not to doubt that the "Spanish language" project is worthy, but rather to ask why disability ministry is so often dependent upon lay people, and so infrequently an idea of the church leaders to be pursued as an important area for ministry development to the point of hiring staff to ensure it happens?

Can it actually be that after nearly 40 years of ministry, the Pasadena church will now refuse to support the ministry and ensure that it will continue? I can recall that there were many Sunday mornings where 60 or more developmentally disabled adults would participate in the church's activities. They lived in the apartments and group homes from all around Pasadena. Some folks we picked up, some rode the bus, and some were brought by their care providers. Very few were brought by church members, other than those working in the ministry.

Sometimes I think about going to a church other than the one I have attended for the past 14 years. Not that I am in some way dissatisified with my church. But more I wonder whether the 14 years that Kathi and I have invested in disability ministry there have made any difference in terms of the priority such ministry would have at the church if we were no longer there.
"Its too bad Kathi and Jeff left. We had a pretty good program going
on there for 14 years. Oh well . . ."

Church leaders, YOU should be taking the lead in ministries to persons with disability. YOU should ensure that such ministries are occurring at your church. Maybe put off your building program and hire a pastor to persons with disability instead. Make a statement to the community about the degree to which you are willing to go to serve others, rather than making another edifice to comfortable worship.

Earlier in this blog we discuss the Catholic Bishop statements. Statement number 9 (January 9)says,
"Our pastoral response is to become informed about disabilities and to offer
ongoing support to the family and welcome to the child."
At least the Bishops see the role of their clergy is the development of ministry, if only becoming knowledgeable about disability in order to offer support. It is a good starting point.


Monday, March 07, 2005

Preparing for acceptance

A light came on for me recently about the role of Christian special educators in the lives of persons with disabilities. As special educators, they are in the business of teaching students a variety of skills. These range from academic to social and other skills which will allow a person to be successful as an adult. But they also have another unique opportunity. They can work to soften the receiving environment, particularly the church, into which Christian children and hopefully others with disabilty will be received.

Those who work with adults, particularly those with developmental disabilities are constantly on the lookout for ways to successfully integrate these adults into the community. An important means for integration which I have advocated is the local church. Christian special educators, therefore, have the opportunity to work to develop skills in their students during the week, and soften the chruch environment persons with disabilities on the weekends. They can work both ends of the spectrum. As teachers, they also have the potential to provide the link to children with or without disabilities in their interactions with parents. They might suggest to parents that they study church programs in the area in order to see if that might be an avenue for the further inclusion of their children with disabilities. Teachers might even use some of the ideas I have written about (for example http://www.jeffmcnair.com/CSRD/localchurch.htm or http://www.jeffmcnair.com/CSRD/networks.htm ) as a way to introduce parents to the importance of networks in helping persons with disabilities to be integrated into the community.

However, in order to have sufficient receiving church networks which reflect the diversity of Christian denominations, it is incumbant on Christian special education teachers to work within their own church to soften it toward persons with disability. How does one soften an environment toward persons with disability? Well, you might start a little class for developmentally disabled adults on Sunday mornings. That's how my wife Kathi and I started at our church. Or, you might invite a student with disabilities to church and act as her buddy throughout the day as she moves through Sunday school classes or the worship service. Perhaps you ask your pastor if you can start a ministry where a group of people go to a group home once a month to play card games with the adults with disabilities who live there. Over time those folks might find there way to the church itself. I think an important part of changing someone or an organization like the church is keeping the issue in front of them. Over time they become more acclimated and they begin to soften. They see you interacting with a group of people and think, "that doesn't look to difficult" and then they give it a try themselves. Maybe you can even convince a music pastor to allow a person with disaibility who happens to be a good singer to sing before the congregation. Such structured opportunities to stare at the person with disabilties are very helpful in breaking down the stigma of the disability.

My wife and I have had great success in intereviewing adults with mental retardation before university classes that we teach. People who are even in special education teacher training programs say it is a "life changing" experience as they have never had that opportunity before (actually they have never taken the time to have that experience before). These types of interactions change the people who reflect the environment. If enough of the people are changed, the environment changes. A changed environment would be one which would be prepared to accept the students with disabilities that the special education teacher is training.

Without the efforts of special education teachers, case workers, and other Christian professionals working in areas of disability, the Church environment will not change and much of the efforts of special education teachers with their children will be in vain as there is no place in the community where adults with disability can be truly integrated.

So I have come to the point of thinking that a critical part of the work of a Christian special education teacher is to work in the environment of her own church. If we as Christians do the work we should do to prepare the environment, I guarantee that secularists will recognize the change and independent of their personal perspective on religiom, will on some level will have few options other than to send adults with disabilities to us, to the church because of the benefits the adults with disability are receiving: benefits that those who are secularist will be hard pressed to emulate in any environment other than a local church.

McNair (from cbu)

NACSPED Conference

This past Saturday, we held the first conference of NACSPED (the National Association of Christians in Special Education). The conference was held at California Baptist University in Riverside, California and by early reports was quite successful. A solid group of special education teachers, persons involved in ministry to persons with disability and parents attended. I was privileged to deliver the keynote presentation in which I outlined the goals of the organization. We will focus on working with the three groups of people listed above.

Conference presentations by others also highlighted one of the three areas. You are invited to visit http://nacsped.com to get a glimpse of the conference program. Shortly, we hope to have powerpoint presentations from the conference available at the website.

Next year's conference will also be held at California Baptist University, on March 11, 2006. For more information visit the webpage. We hope you will be able to join us next year.