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

Thursday, July 26, 2007

Disabled man / Christian man

As I have mentioned before, I have a friend, a man who uses a wheelchair who challenges me to think about many issues related to disability and Christianity. As he works through various issues in his personal life, he asks me what I might suggest, how I might counsel him regarding the various issues he is grappling with. On several occasions, he has asked me, "Why is it that the disabled person has to change and not the nondisabled person?" My response typically is "I am not speaking to you as a disabled man, I am speaking to you as a Christian man." I hope that is encouraging to him.

But I have been wondering lately, how does being a disabled man impact being a Christian man? Does being a disabled man change one's expectations regarding what that person might be able to be as a Christian man? Clearly if a person has a cognitive disability, has mental retardation, there will be some limits in terms of knowledge, or specific ability levels. However, I have known people with mental retardation who althought limited in some areas, were very gifted in areas of faith, forgiveness, loyalty, and love among other things. So on the one hand, to limit a person with a disability is wrong. I limit others at my peril, in terms of not being Christlike in my interactions with them. Because there is more to disability than just the outward signs of physical or mental disabilities, I must see those people as I see myself. I too have strengths and weaknesses, some related to differences in my abilities, some related to differences in my abilities, some related to my sinful condition. But overall, we are the same.

Now clearly, I cannot expect self-control from a person who is mentally ill, or emotionally disturbed. They may have the desire to be self controlled, but they lack the ability to be so. It is no different in a person with mental retardation wanting to read the Bible, but lacking the ability to learn to read. But I wonder whether there are other aspects of being a disabled man which may limit a person's particular abilities. Jean Vanier speaks of the wounds of persons with disabilities. Wounds which Wolf Wolfensberger expands upon, breaking them out into specific types of wounds. See the March 21, 2007 posting for more specifics on wounds. If I were to have a stab wound in the arm, you would hardly expect me to throw a baseball, or use a hammer. I might desire to do so, but I am unable because my wound has incapacitated me.

So thinking about the particular wounds faced by a person with a particular disability, I might find that that person would face limits due to his wounding. Wolfensberger talks about diminishing wounds, attempting to limit them to the degree possible. His goal generally is largely to simply limit the wounds a person has to face, out of caring, out of concern out of love. I, however, would also argue that as we work to diminish the wounds of our disabled brothers and sisters we empower them to grow in various aspects of their Christian faith. We enable them to forgive, we enable them to love, we enable them to do a myriad of things they would desire to do in order to be Christlike, but are unable to do because of the wounding they face.

In summary, we must work to diminish, to attend to, to love those who are wounded. In doing so, we literally heal the wounds that prohibit them from being all they can be as Christians.


Friday, July 20, 2007

Joni and Friends "Through the Roof" Summit

The Joni and friends organization are planning their series of 2007 (follow the link)
Joni and Friends "Through the Roof" Summit meetings to be held in Chicago in September and in Pasadena in October. These are great events that you should attend if you have any interest in disability ministry, or a Christian perspective on disability.

My wife Kathi and I will be speakers at the event in Pasadena along with many other excellent and informative sessions.

It is also obviously a great pleasure to hear Joni Eareckson-Tada speak. Last year she was absolutely amazing and powerful. I have had the priveledge to hear her on several occasions and of course on the radio. But she gave one of the most convicting and powerful presentations of issues related to culture, church and disability I think I have ever heard. Do not miss the opportunity to hear her and meet her.


Wednesday, July 18, 2007

Learned helplessness and learned unhelpfulness

Learned helplessness results from period in which someone encounters failure and as a result just gives up. It is a motivational problem. People will say, "I'm tired of fighting" or something to that effect.
Learned unhelpfulness is the result of someone being taught that all they need to do to help their neighbor is to pay their taxes, or contribute some money to a group that is doing something. People will say, to use the words of Ebenezer Scrooge in Dicken's A Christmas Carol (see A nation of Scrooges? ),
“Are there no prisons? . . .And the Union workhouses?” demanded Scrooge . .
.”Are they still in operation? . . .The Treadmill and the Poor Law are in full
vigor, then?” . . . “Oh! I was afraid, from what you said at first, that
something had occurred to stop them in their useful course,” . . .”I wish to be
left alone” . . . “since you asked me what I wish, gentlemen, that is my answer”
. . . “I help support the establishments I have mentioned – they cost enough:
and those who are badly off must go there.”

Those having the potential to help, instead look to the government because they pay taxes, or look to some organization because they give money. As a result then are unhelpful on a personal level.

In the end there is a confluence of learned helplessness and learned unhelpfulness. Those needing assistance may be totally frustrated with government and other beauracratic structures from whom they have been endeavoring to receive help resulting in their feeling helpless and wanting to give up, while those who could help have learned to lean on beauracratic structures to help those in need, thinking they need to do little or nothing other than that, resulting in their becoming unhelpful.

As Christians, we should know better than to rely on the government to help people in need. Sure we can support and/or advocate for government programs, however, we recognize that services are rendered when caring is needed. As Christians, we should also know better than to assume that all we need to do is to send a check to someone and we are then relieved of our responsibility towards others. Statistics indicate that the majority of Christians do not even tithe their financial resources, so that we are giving too little financially to charitable and church organizations, and expecting others to also do the grunt work of helping others, whether it is through governmental programs or relief organizations.

Its like the perfect storm of uncaring coupled with deep need. Perhaps the only way it could get worse would be for the government to cut programs as then the learned unhelpful would be relying on governmental programs that were not in existence, and the learned helpless would experience a further loss of motivation to attempt to fight for limited governmental resources.

To my mind, the answer is for me to get involved with my neighbor. I must tell you that that involvement is not often clean and easy either. I have a friend I am trying to encourage and support who looks to me for solutions and I have none. I sit with him and talk through the issues, I am his friend, I try to encourage him in the midst of the frustrations with the system, but I don't have the answers. What I do have for him is encouragement and friendship. He knows that when we get together for coffee, that he will be meeting with someone who cares about him, who listens to him and will try to help him if we can arrive at a course of action. Will I be able to help him to move forward, I hope so, but I make no promises. However, I also do not wash my hands of him in the assumption that the government or other agencies are taking care of him. I know better. I cannot do everything, but I can do something and what I can do I try to do and I think that is encouraging to him. It helps him to continue to battle the helplessness that the system is unconsciously trying to teach him. It also helps me through my friends encouragement to battle the unhelpfulness that the system is unconsciously trying to teach me.

Human service is always messy and not easy. The degree to which human service becomes regimented and easy is the degree to which it is excluding helpers, removing freedoms, and teaching helplessness. To paraphrase Dr. Julian Rappaport, when I use convergent thinking to solve human service problems I prove that I do not understand the problem.

So find those around you who are being devalued and encourage them. Then look in the mirror and ask yourself if you have bought the lie that helping is the government's or some agency's responsibility. Have you been programmed to be unhelpful?


Monday, July 16, 2007

Inclusion and exclusion

I was struck the other day by something. It may be obvious to you, but the notion of inclusion is not really an outcome. Inclusion is more of a strategy that has been applied at schools, particularly public schools in order to attempt to facilitate social integration. Inclusion is not the outcome, inclusion is the intervention, the strategy I might use in order to facilitate integration. It's like phonics is a way to teach reading. Phonics is not reading, it is a way to teach reading. Many people learn to read via phonics, but others don't. As a strategy to teach reading, phonics is pretty good. I am unsure whether inclusion as a way to teach integration is very good at all.

It has at times made me uncomfortable to say that I am not a big inclusion fan. When you say that, people think you are discriminatory against people with differences, like you don't want them around or something. But you see I am a big integration fan, maybe even a zealot. I think people with and without disabilities, for example, should work to be integrated together. I believe in the outcome, I just don't necessarily believe in the strategy many have attempted to use to facilitate integration, that being inclusion. Maybe it is just inclusion in its current form that I don't particularly like, but I must say that my perspective is supported by the lion's share of the empirical research. Inclusion as practiced by public schools does not really lead to integration. That is the reason I am not a supporter.

What might be some of the major reasons why inclusion is not working in schools? Could it be that...
Inclusion is something I expect students to do that will lead to integration.
Inclusion is something I expect others to do that will lead to integration.
Inclusion is something I do not do in my own live that will lead to integration.
Inclusion is something I do not do because I really do not want integration in my personal life.

You see we think it wonderful when children with and without disabilities are integrated, but we are unwilling to do it in our own lives as adults.

Once again, however, it is important to make the distinction that inclusion is just a strategy to achieve integration, it is not the outcome.

In a related way, I have been thinking about exclusion. Exclusion is also a strategy that people use deliberately or otherwise to teach, or to achieve an end. I have most often seen exclusion employed as a strategy to keep a group from changing. "If we integrate you, we will not be able to do things in the manner in which we have become accustomed to doing things. If we do not integrate you, we can keep doing things the way we always have done them." I think that is a reason why there aren't more people with various disabilities in local churches.
So in the same way that inclusion is a questionably successful strategy for facilitating integration, exclusion is a means which is a very successful for facilitating segregation.

The one thing I can say for those attempting inclusion, is that they are at least trying to get others to believe in inclusion and hopefully integration. But it is too often a do as I say not as I do kind of proposition, so no wonder it doesn't work very well.

But whatever we do, we should not practice exclusion because whether we know it or not, it is probably a more powerful form of instructional strategy, a more powerful intervention than inclusion. If we see someone being disruptive or having a seizure in a social setting, our response should not necessarily be to remove them from the setting. That is exclusion. Perhaps we might first think of what is best for the individual, at least for a moment. Might we stop for a moment, to determine whether there are flaws with the setting? Disruptions are not always bad. Disruptions can cause us to evaluate the way we do things. Disruptions can cause us to ask, "Is this the best way of doing things?" "Is exclusion of this indiviudal the only response we can offer?" Are we excluding because we just don't want to be confronted with the need for change? Are we so brittle that we cannot accommodate?

Disruptions can introduce us to people and ways of looking at people which we might not have considered before.


Saturday, July 14, 2007

Write love

My son, Josh, turned me on to an cool story of love, acceptance and forgiveness. Check it out. TO WRITE LOVE ON HER ARMS by Jamie Tworkowski

In the story it states,

We often ask God to show up. We pray prayers of rescue. Perhaps God would
ask us to be that rescue, to be His body, to move for things that matter. He is
not invisible when we come alive. I might be simple but more and more, I believe
God works in love, speaks in love, is revealed in our love. I have seen that
this week and honestly, it has been simple: Take a broken girl, treat her like a
famous princess, give her the best seats in the house. Buy her coffee and
cigarettes for the coming down, books and bathroom things for the days ahead.
Tell her something true when all she's known are lies. Tell her God loves her.
Tell her about forgiveness, the possibility of freedom, tell her she was made to
dance in white dresses. All these things are true.

Why is this interaction with the girl in the story, the love showed, the kindnesses expressed, the forgiveness of God explained, all of these acts of love, why are they important?
Are they important because of who the girl is or who she might be?
If she were to become a great poet, would those acts be now justified?
If she was to be saved from her addictions would those acts be justified?
If she were to become a loving mother, would the acts be justified?
If she were to become a Christian, would the acts be justified?
If she were to be unable to escape her addictions would those acts be unjustified?
If she remained an addict for the remainder of her life, would those acts be unjustified?
If she were never to become a Christian, would those acts be unjustified?

Can you see acts of love and kindness and forgiveness are of value within themselves? The recipient of those acts is largely irrelevant. Sure our heart goes out to a woman who condemns herself in profane terms, writing her indictments with a razor on her skin. But what of a woman who has been socialized to believe that she is worthless, or would be better off dead, or should have been the focus of an abortion to prevent her life? Does our compassion change if the woman has down's syndrome, or a birth defect of some kind?

I believe the story shared at the website is a true story, and may God help that woman to escape her addiction and her self abusive behaviors and find forgiveness. But may God also help His church to escape her addiction to comfort that leads to exclusion, exclusion which is really a form of self abuse through the exclusion of people God loves and wants in his church, and may He through the church's repentence provide forgiveness leading to repentence.

In the story, the girl condemns herself by writing f*** off on her arm. What is the church writing on the arms of persons with down's syndrome or mental retardation or mental illness? I pray that as the website says, we are writing love on those people for the sake of writing love on those people. That is the end. For the benefit we receive when we show love to another without any expectations or for no other reason than the showing of love.


Thursday, July 12, 2007

Church as community recreation

Teaching Exceptional Children is a kind of a research magazine put out by the Council for Exceptional Children (CEC), perhaps the largest special education professional organization in the United States. In the July/August 2007 edition, there was an article entitled, "Including students with moderate and severe disabilities in extracurricular and community recreation activities: Steps to success." The article by Kleinert, Miracle and Sheppard-Jones briefly describes a survey of special education teachers that the authors completed. They found the following:

The five most frequently noted community activities in which at least one
of their students participated included church social activities (65.5% of the
teachers responding to tht question indicated that at least one student
participated); peer social activities not related to schools, such as going to
the movies or shopping (58.7%); church youth groups (56.3%); community sports
teams (25.0%); and church clubs (21.4%).

This is not totally surprising as other researchers have pointed out the involvement of persons with disabilities in religious groups. This is just some of the latest information. Later in the article, the authors make the following statement.

Several findings were somewhat surprising. First, the high rates of
reported participation in such activities as church youth groups suggest that
teachers of students with significant intellectual disabilities may want to
encourage their students to become involved in these opportunities if the
students and their families are members of local congregations. The high
rates of participation also suggest that teachers should assist families in
ensuring that their sons or daughters are meaningfully included in youth
activities for their church, synagogue, or faith based organization...

I have been speaking about and writing about this potential for community integration for many years now. I have always thought it would be ironic if secular groups were the ones who ultimately encouaged faith groups to be more involved in the lives of persons with disabilities. I will never forget a presentation I once made at a national conference of a secular special education organization. I presented on the potential of faith groups to be the answer for community integration of adults with cognitive disabilities. At the close of my presentation, one attendee raised her hand and said, "This is so obvious. Why haven't I ever heard about this before?" It is obvious, and there are many reasons one might not have heard of it ranging from secular bias to church inaction. As this article illustrates, however, secular organizations such as CEC might be recognizing the potential of the church. Let us pray for more research from a secular perspective which would help secularists.

This article discusses what is already occurring in the lives of children with moderate to severe disabilities. It is wonderful when the church surprises secularists with their inclusive practices. Both because it causes them to second guess the negativity sometimes evidenced toward churches in general, and because churches are making a difference in the lives of people in a significant way. A difference in which no other group has greater potential.


Wednesday, July 11, 2007

Divorce and children with down's syndrome

In the recent American Journal on Mental Retardation, there is an article entitled, "Divorce in families of children with down syndrome: A population-based study" by Urbano and Hodapp (vol. 112, number 4, 261-274, July 2007). The abstract states the following...
In this study we examined the nature, timing and correlates of divorce in
families or children with Down syndrome (647), other birth defects (10,283) and
no identified disability (361,154). Divorce rates among families of
children with Down syndrome were lower than the other groups. When divorce
did occur in the Down syndrome group, hoever, a higher proportion occurred
within the first 2 years after the child's birth.
The article goes on to mention the "Down syndrome advantage" that being that "families of children with Down syndrome cope better than do parents and familes of children with other disabilities." Over the 12 year period studied (1990-2002) the divorce rate was 7.6% in families with children with down's syndrome, 10.8% in the comparison group (not identified disability) and 11.2% in the other birth defects group. The one caviat finding relative to down's syndrome, was, "Of families who divorce after the birth of the index child, families of children with Down syndrome were almost twice as likely to divorce during the first two years of the child's life."

Finally, the authors make the following statement in the discussion section of the article.
Taken together, the results of this study have important practical and
theoretical implications. Practically, parents of newborns can be
counseled about the risks and timing of possible marital discord. For many
families, especially those steeped in the still commonly heard notion that
"divorce is rampant" among families of children with disabilities, it may be
comforting to know that divorce is neither a necessary nor a common outcome of
having a child with Down syndrome.
They go on to say,

...social workers and early interventionists can educate parents about
common stresses that arise during the earliest years. Those parents with
less education can be especially targeted, as can those parents-especially
fathers-who are both less educated and who live in rural areas...neither of the
United States' two main parent groups in Down syndrome currently feature special
programs designed for outreach to rural families.

What wonderful opportunities for the church. Counseling early on in the life of a family with a child with Down's syndrome and outreach to rural families in particular. There are a lot of Chrisitan churches in rural settings. How about stepping up to the challenge.


Tuesday, July 10, 2007

Community integration through the public schools

The following is the abstract from a study published in Exceptional Children, a journal of the Council on Exceptional Children, entitled "A National Study of Youth Attitudes Toward the Inclusion of Students with Intellectual Disabilities" by Siperstein, Parker, Bardon and Widaman (2007, Vol. 73, No. 4, 435-455).

The authors surveyed a national random sample of 5,837 middle school students on
their attitudes toward the inclusion of peers with intellectual disabilities
(ID). The national sample provided results that were accurate, with a margin of
error of +/- 1.4%. Findings indicated that youth (a) have limited contact with
students with ID in their classrooms and school; (b) perceive students with ID
as moderately impaired rather than mildly impaired; (c) believe that students
with ID can participate in nonacademic classes, but not in academic classes; (d)
view inclusion as having both positive and negative effects; and (e) do not want
to interact socially with a peer with ID, particularly outside school.
Structured equation modeling showed that youth's perceptions of the competence
of students with ID significantly influence their willingness to interact with
these students and their support of inclusion.

Those of us in special education, know that inclusion has been the perspective of many in education for the past 15-20 years. You must understand that there are many perspectives on inclusion in the public schools. There are those who are total zealots who feel that the only place for any child, independent of their disability is the "regular classroom with their age peers." There are others who feel that children with disabilities should be segregated into separate schools where they can receive "intensive therapy." Others hold differing positions somewhere in the middle, although the politically correct position is much more toward the inclusion in the regular class over the segregation position. There have been many studies, largely anecdotal that speak of the trememdous benefits to children with and without disabilities as a result of inclusion. There have not been many empirical studies supporting the inclusion position in terms of long term integration benefits.
Now one cannot take a position on the basis of one study, but I must admit that I find this study quite sad. You see, at least in regard to the children who participated in this study and the larger group they may represent, inclusion is not working very well.
We see that in the summary results,
limited contact in classrooms and school,
students perceived as more impaired than they are,
inclusion has both positive and negative effects, and
typical children do not want to interact socially with a peer with ID, particularly outside school.
The question remains in my mind as to whether or not the school, in particular the general education classroom, is the best place for integration. The assumption from some researchers and inclusion zealots is that it is the best place. The authors of the article conclude that their research might demonstrate that, "inclusion is not working; that the policies and practices put in place have not reduced or eliminated the social barriers to inclusion for students with ID; and thus, that the social goals of including students with ID in general education enviornments may not be attainable or even realistic" or contrarily perhaps "we have not yet done enough to promote inclusion and that we cannot rely on physical inclusion by itself to foster positive attitudes." What the authors do conclude is, "What the results of this survey do indicate is that finding ways for youth to witness the competence of people with ID would go a long way toward fostering positive attitudes." How many opportunities are provided in schools for children with intellectual disabilities, with mental retardation to demonstrate competence when the point of integration is the cognitively oriented, regular class curricula? We set them up for failure in many ways and then are surprised when they are seen as less than competent.
The saddest of the findings, however, was that typical children do not want to interact socially with a peer with ID, particularly outside school. That is probably one of the reasons why thsy see their peers as more disabled than they actually are...they don't know them. The study implies that peer pressure would cause the lack of interaction outside of school, which I don't quite get. I could see peer pressure in school, but outside of school there would be more opportunity for privacy in ones social interactions. But what type of setting would allow a person with an intellectual disablity to be seen as competent outside of school for the purposes of social integration. Many settings might be imagined, however, as this is "disabled Christianity" you know my obvious suggestion is the church. Schools cannot find the key to helping persons with disability to demonstrate competence so that positive attitudes might be developed. The Christian church has the potential to provide myriad opportunities for people with various diabilities to be seen in a competent, positive light, which the authors of the article contend would lead to community integration.
Schools have set the tone for integration through special education programs and efforts at inclusion, but they are failing at long term community integration I would suspect. Once again, can you see that the schools are not the answer to the integration question? Once again the answer for integration falls squarely at the feet of the church.