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.

McNair

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.

McNair

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?

McNair

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.

McNair

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?
OR
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.

McNair

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.



McNair

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.

McNair

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.

McNair

Kindly patitudes versus the truth

I read a story the other day sent out by a person in the disability community whom I respect. I won't share the story here, but the jist of it was that a religious leader said something that was encouraging when others were being discouraging about this leader's child with a cognitive disability's presence in the worship service. Obviously the words that were shared made the parent feel good, good enough to share the story with others. Some of the reaction from others, also leaders in the disability community was also positive. I just kept silent.

You see, it doesn't help if we share platitudes, no matter how kindly they sound or how kind our intentions are if they aren't the truth. I have been in settings were a severely disabled person was screaming or making very loud noises while someone was trying to teach a class. Kind people around will say, "He's praying" or something to that effect. Well I have been around a lot of people with severe to profound disabilities, and I will tell you that many do not have the cognitive ability to pray, or to talk or to understand a great deal of what is going on around them. Some scream for a particular reason and some just scream. For me to even say they are praying when they are screaming is really to demean them, to treat them like some kind of a child or something because if I was screaming you wouldn't think I was praying. The point is, if someone is screaming, they are screaming they are not praying. If someone is swearing, they are swearing they are not praying or something else. The question is, how do we make places for people who because of the severity of their disability will scream or swear or do whatever it is that they do?

Could I be in a worship service where someone in the audience was screaming? Not if I am supposed to sit quietly and listen to someone teaching me. Worship would have to change, or the teaching would have to change, or the person would have to get quieter or be removed. As a church, our response has been that the person has to be removed or get quiet. My response is not to say they are praying and should stay when they are screaming. My response is that the way we do worship needs to change, or if it is a teaching situation, the teaching situation would need to change such that a person who is screaming would be able to be a part of the teaching situation. Now not everyone should be a part of every teaching situation. I have trouble enough with teaching or taking college classes when the students are quiet. There are settings where screaming people are not welcome because of the situation. Unfortunately, church worship services as designed, are such places. There is a problem with that. The one time during the week when we gather as Christians, the church service, is the most socially restricted of any of the times we gather as Christians. Worship has largely become a time where I sing, or sit or stand, but otherwise I am to be absolutely silent (I recognize that is not the case for all Christian worship gatherings, however, largely it is).

It would seem that the largest gathering would be the time when there would be the MOST latitude in behavior, or openness in what is accepted socially. So if I attempt to be a part of the larger gathering but can't because of my disability, I would have to argue that it is the Church's fault. Particularly when as a person with a cognitive disability, there is literally no other place for me to go, no place for me if I am a screamer, or whaever my social difference is. My best hope is to be where the most people are, and unfortunately that is where the most restrictions on behavior are present.

We have got it entirely backward. Sunday morning worship should be the most wide open time. It should be noisy and joyful. Maybe there is some instruction, but it is understood that there is going to be a lot of activity in the midst of the instruction. People might be walking around, or talking to each other, or even interrupting the speaker with questions. But it is a jubilant time where we celebrate our gathering together as all Gods children with our slight or significant differences. Then if you want to parse out the scriptures in a quiet place, we go to a classroom, and that is were particular behaviors are required. You might have to know Greek for a class or you might have to be a parent or have some other characteristic. That is the place for discrimination, not the greater group gathering of the church. And there should be a place for everyone in one of those smaller classes or groups. Literally, anyone who would come to church should have a place where he can be himself (in terms of differences of disability) and be accepted. That is were we need to go in terms of changed structures.

It does no good and it is untrue to say people with mental retardation who are screaming are praying. Don't offer platitudes no matter how kind, about who they are. Rather, make a place for them and open things up a bit. Worship settings should not be the most brittle, the most socially restrictive of all church settings.

McNair
(fcbu)

"Church asks mom, disabled child to leave"

The following is a link to an article forwarded to me by a colleague, Kara, available on Unionleader.com entitled "Church asks mom, disabled child to leave." Please read the article and the comments.

The first question you must ask, is why this would be considered newsworthy? I think it's the old dog bites man is not a story, man bites dog is a story. Church is kind to the disabled would not be a story (that is what would be expected) but "church asks mom, disabled child to leave" is a story even to secular people, because it is not what you would expect from a church. Even a secular newspaper/website has sufficient understanding of the Christian faith to know that that shouldn't happen. Why are Christians themselves so slow to understand? Why are church leaders so slow to understand?

But I would refer you to the comments made by people in response to the article and there are many. Interesting to see the defensiveness at times and the outrage at what is deemed unChrisitan behavior.

If they only knew...
McNair

Articles by Jeff McNair

If any of you who visit this blog would like to receive a small packet of articles I have written on disability/disability ministry, email me with you regular address and I would be happy to send them to you.

You can email me at jmcnair@calbaptist.edu

Thank you for your interest.
McNair

Article link from ESA online.

An article I wrote a couple of years back is part of a features section of ESA (Evangelicals for Social Action) online. You can view the article here There are no retarded people in St. Louis

Let me know what you think?
McNair
(fcbu)

The Institute on Disability Studies at California Baptist University

I am excited to share that this past week, California Baptist University approved The Institute on Disability Studies. Although we plan to work in a wide variety of areas related to disability, one of the distinctives of The Institute will be that it will look at disability/disability studies from a Christian perspective. I am unsure if there are other (if any) similar institutes at other Christian universities. If we are one of the first to develop such a program, it is our goal to be the first of many in the future.

The foci of The Institute will be faciliting disability studies research, facilitating graduate programs in disability studies at CBU, development of research materials and facilities, various training opportunities, and providing outlets for research in disabilty studies.

We are currently seeking funding for The Institute, and hope to very soon have further announcements to make concerning partners/collaborators in our Institute work. If you represent a funding organization and would like to work with us, we would be pleased to dialogue with you. The Disability Studies Institute at California Baptist University is truly a new and unique funding opportunity, heretofore largely unavailable anywhere. As we develop, website information will be provided at this blog and elsewhere. You can also contact me at jmcnair@calbaptist.edu

May God bless our efforts!

McNair
(fcbu)

How to ask the questions?

Michael Oliver is an author in disability who I really enjoy reading. He makes me think. In his book with Bob Sapey, Social Work with Disabled People (2006, third edition) he relates two sets of questions asked of persons with disabilities. One set from a 1986 disability survey and the other a set of alternative questions he (Oliver) developed in 1990. He makes the point that respondents are influenced by the way surveys ask questions. In particular, he relates that the particular survey done in 1986 causes respondents to think of themselves as inadequate by the way questions were asked. I want to juxtapose the two sets of questions so that you can see the difference clearly. These questions and the discussion surrounding them can be found on pages 60-61 of the book.

1986-What complaint causes your difficulty in holding, gripping or turning things?
1990-What defects in the design of everyday equipment like jars, bottles or tins causes you difficulty in holding, gripping or turning them.

1986-Are your difficulties in understanding people mainly due to a hearing problem?
1990-Are your difficulties in understanding people mainly due to their inabilities to communicate with you?

1986-Do you have a scar, blemish or deformity which limits your daily activities?
1990-Do other people's reactions to any scar, blemish or deformity you may have, limit your daily activities?

1986-Have you attended a special school because of long-term health problem or disability?
1990-Have you attended a special school because of your education authority's policy of sending people with your heal problem or disability to such places?

1986-Does your health problem/disability mean that you need to live with relatives or someone else who can look after you?
1990-Are community services so poor that you need to rely on relatives or someone else to provide you with the right level of personal assistance?

Oliver advocates for what he calls "the social model of disability". He states, "The argument for a social model of disability is that the causal relationship begins with the reactions of mainstream society to people with impairments that oppress and exclude them. Part of this oppression is the imposition of an understanding of disabiltiy that blames the individual" (p. 60).

I had the opportunity to address a small group of people this past week at Community Christian College in Redlands, California. During the question and answer time at the end, a gentleman asked an interesting question. "Why do you think people with disabilities don't go to church?" The question, although a good one, reminded me of some of the questions above.
What is it about people with disabilities that causes them to not be church goers?
What is it about being disabled that makes you not want to go to church?

The answers I provided seemed unsatisfactory to several in attendance. You see my answers related to church attitudes, or leadership attitudes, or changes which needed to occur within the church. Those unsatisfied wanted me to provide answers about the people with disabilities. The only answers I could provide were things like, people don't like to be around other people who are impatient with them, people don't like to be around other people who don't they are important, people don't like to be around other people who wish they weren't there, people don't like to be around other people who don't want to have to change the things they do in order to make a more accepting environment. Or even something as simple as people will not go places where they are not invited to go. The answers had little to do with the people with disabilities and much more to do with the unacepting environment. I could tell the questioners rejected my response saying they couldn't or wouldn't believe that churches were like that. Obviously churches are loving and caring and accepting places. Therefore if disabled people were not in churches in numbers reflecting the community, there was something wrong with the disabled people.

McNair
(fcbu)

God's works and God's grace

In the past I have commented on the John 9 passage about working the works of God. Click here to see the post. The implication is that we have the opportunity to "work the works of God" we have the opportunity to be his hands to people here on Earth. Recently I was thinking about that verse in combination with the 2 Corinthians 12:9 passage were Paul is told by God, "My grace is sufficient for you" when he asked to have the thorn in his flesh (some form of a disability) removed. If you put these two verses togethe, you come up with an interesting lesson.

One of the greatest works of God is the provision of His grace in a multitude of ways to people. It occurred to me that one of the implications of God's statement, "my grace is sufficient for you" could be that one of the ways in which God makes his grace sufficient is through the works of Christians, through the work of His people. God's grace goes way beyond those things that people do, and is not dependent only upon what people do. Yet there might be an aspect of this connection that people are or are not recipients of an aspect of God's grace because of what the Church does or does not do.

The Joni and Friends organization has reported the statistic that 95% of people with disabilities are unchurched. That implies that in as much as 95% of the disabled population, the Church is not taking advantage of the opportunity to work the works of God, to be agents of His grace, to be sufficient to people with disabilities. It is a very sad statement. We have the potential to be agents of God's grace and we choose not to be. We have the potential to have the "works of God" manifested through us and we say, "Nevermind."

McNair

The Kingdom of God in your neighborhood

I had the distinct priveledge this past week of speaking briefly at the Amos Fellowship in Riverside, California. Pastor Julio Andujo was interested in ways in which the church could engage the community, so I was invited. I must admit I was exhortive in my comments but the church was open and receptive. Pastor Andujo compared my comments to someone telling you you have crumbs on your face or that your clothing doesn't match...that is caring enough to point out ways you might improve what you are doing. Several congregational members approached me between services to tell of their experiences with persons with disabilities, some of whom were actually parents of children with disabilities. Many expressed appreciation that the issue of disability was raised in their church.

Paston Andujo's sermon had to be one of the most powerful presentations of God's word that I have heard in recent years. He spoke about the Kingdom of God, specifically referring to it as a place where we level the playing field. We provide access to God's saving grace through our leveling of the playing field. Although he was not speaking specifically to issues of persons with disabilities in the church, his comments were obviously applicable.

He then challenged the congregation with the question, How is the Kingdom of God doing where you are? How is the Kingdom of God in your neighborhood? How is the Kingdom of God in your home? How is the Kingdom of God in your school? Great questions!

As we level the playing field so people can have access (not just physical access) we give people access to God's word, to God's people, to the church. As a point of evaluation, we can then ask ourselves, How is the Kingdom of God doing for people with disabilities in our sphere of influence. I would ask you, how is God's grace begin shown, being demonstrated in your sphere of influence?

McNair

Genetic Information Nondiscrimination

It is called The Genetic Information Nondiscrimination Act of 2007, and begins with the heading, "To prohibit discrimination on the basis of genetic information with respect to health insurance and employment." The full text of the bill is available here
http://www.govtrack.us/congress/billtext.xpd?bill=h110-493
You can also get other information regarding the bill here
http://www.govtrack.us/congress/bill.xpd?bill=h110-493
The President apparently supports the bill as evidenced by the following statement
http://www.whitehouse.gov/omb/legislative/sap/110-1/hr493sap-h.pdf A critical aspect of the statement says, "The Administration appreciates that the House Bill clarifies that the bill's protections cover unborn children."

As I have reviewed the bill, there are many aspects which are very encouraging. However, there is one aspect that is not explicitly stated in the bill which causes concern to me. That is, in searching the bill there is no mention of "prenatal diagnosis" or "unborn children" that I could see relative to genetic information and its effect particularly on insurance benefits.

The bill has passed the House and is now headed for the Senate. I found out about it through World magazine which had a brief mention in the "Making the rounds" section.

In his book "The future of the disabled in a liberal society" Hans Reinders raises the spectre of parents going ahead with the birth of a child who has been prenatally diagnosed as having some disability, and as a result being denied insurance benefits for that child. I wish that aspect of the use of genetic information in regards to insurance were spelled out more clearly in the bill. It would close the door on practices which would support the abortion of children with prenatally diagnosed disabilities.

McNair

"Don't hate the player, hate the game"

"Don't hate the player hate the game" is a saying that you will sometimes hear people say. The idea is, for example, good looking guys tend to date good looking girls. That is just the way it is. So I shouldn't hate a good looking guy (the player) because the good looking girls like him. I might hate the fact, however, that good looking girls and good looking guys like each other (the game).

So what could this possibly have to do with disability... bear with me.

It seems in society today people with disabilities are ostracized, and misunderstood, and just generally not treated very well. At least not as well as those without disabilities (the game). I hate the game. I hate the fact that that is the way of the world. But should I not also hate the player?

My faith is clear that I shouldn't hate anybody, so I do my best not to. But if the player says that I treat people the way I do without thinking, because that is the way I have been socialized he is worthy of disdain.

At the recent Social Role Valorization training I attended, Dr. Wolfensberger stated the following:

Collective unconsciousness can be so vast that even the most global
societal policies may be undeclared, unexplicated, unacknowledged, and even
denied. Thus for many people to all work toward a bad thing requires no
deliberate or conscious conspiracy. While this is well-known by social
scientists, most citizens are not aware of how they themselves can be totally
unconsciously acting out undeclared, large-scale, societal policies in their own
daily lives (from "A leadership-oriented introductory social role valorization
(SRV) workshop, February 27, 2007)

It is one thing to recognize the game and just shrug your shoulders and say, don't hate the player, hate the game. It is quite another to be a player in the game and be so unaware that you are working toward a bad thing. To be unaware and yet working on the side of the bad thing. Churches need to wake up to their participation in the bad thing. Discrimination is the way things are, it is the game, but players have a choice to play or not in the discrimination game.

Changing the game begins when you wake up as a player.

McNair
(fcbu)

Pillow angel surgery broke the law

So it turns out that the procedure to keep Ashley as a child was illegal, because she was sterilized without court approval. CNN.com reports,

The Washington Protection and Advocacy System, a private group vested with
federal investigative authority for people with disabilities, found that Seattle
Children's Hospital and Regional Medical Center violated the constitutional and
common law rights of a girl identified only as Ashley by performing a
hysterectomy without a court order from the state.
"Washington law specifically prohibits the sterilization of minors with developmental
disabilities without zealous advocacy on their behalf and court approval," said
Mark Stroh, WPAS executive director, in a statement.

The article at CNN.com gives the impression that although they regret not following the law, they in no way regret the procedure. In a later quote from the article,

It was like seeing a baby in a much larger body," said Dr. Douglas Diekema,
director of education at Treuman Katz Center for Pediatric Bioethics in Seattle
and chairman of the bioethics committee of the American Academy of Pediatrics,
who was brought in to consult on this case.
"She would never talk, never walk, and was dependent on her parents to meet all her needs. Her cognitive function was the equivalent of that of an infant, unlikely to ever change." Family members call her their "pillow angel."

So the chairman of the bioethics committee of the American Academy of Pediatrics comes down on the side of the surgery. How many times have you heard stories about doctors telling someone they will never walk, or never run, or never talk or never do whatever the doctor thinks they won't do. If nothing else, this should tell you that

THE MEDICAL PROFESSION CANNOT BE TRUSTED WHEN IT COMES TO DECISIONS ABOUT PEOPLE WITH DISABILITIES

Understand me that I have dear friends and family members who are medical professionals. They are incredible people who do wonderful things. But as a group, doctors just don't get it about disability. To Dr. Diekema, the sterilization of the little girl was not a problem of ethics it was a problem of legality. Its like, you didn't get a permit before you built the addition on your house. You didn't really do anything wrong, you just didn't follow the letter of the law.

Later in the CNN.com article,

Writing on their blog, her parents said, "Ashley's smaller and lighter size
makes it more possible to include her in the typical family life and activities
that provide her with needed comfort, closeness, security and love: meal time,
car trips, touch, snuggles, etc."

So closeness, security, love, touch, and snuggles are dependent upon a person's size.

"Sterilization is not the intent of the 'Ashley Treatment,' but a byproduct of
it," they wrote, adding that while they support laws protecting against
involuntary sterilization, they believe the law is "too broadly based" to
"distinguish between people who are or can become capable of decision-making and
those who have a grave and unchanging medical condition such as Ashley."

So, removing one's uterus causing sterilization is a by product of the procedure. Also, people who are perfectly healthy but have severe mental retardation now are characterized as having "a grave and unchanging medical condition." To label a person as having "a grave and unchanging medical condition" only sets us up for the next step of taking them out of their misery via euthanasia. After all, as Dr. Diekema (quoted above) said, "disabled children (who) are traumatized by menstruation." So if you are traumatized by a normal aspect of being a human being, we don't help you to work through that trauma. We sterilize you. We take our your uterus. Also, don't you think it is odd that this little girl who is apparently so disabled, so mentally handicapped with her "grave and unchanging medical condition" would even know she was menstruating?

Do you see how these people speak out of both sides of their mouths? She will be traumatized, but she is too disabled to understand the ramifications. Either she isn't traumatized and doesn't understand or she is traumatized and does understand. However, in spite of her understanding of what is done to her, I understand what was done to her and therefore I need to speak up, speak out against it. I hope you will as well.

As Mark Stroh of Washington Protection and Advocacy System stated in the article.

"The implementation of the 'Ashley treatment' raises serious concerns about
the continuing discrimination faced by people with disabilities --
discrimination which is often based in stereotypes about their potential and
value as individuals"

For the complete text of the article, visit the following website.

http://www.cnn.com/2007/HEALTH/05/08/ashley.ruling/index.html?eref=rss_topstories

McNair

Impaired people

At the disability Sunday program at my church mentioned in the previous two entries, I was one of the speakers. At one point in the service, I asked all of the people in the room who had some kind of mental or physical impairment to raise their hand. I don't know what I thought about the numbers of people in a room who would have an impairment, but it appeared to be well over 50% of the group in each of the three services. I was surprised. I then talked about the teasing kids get as kids about wearing glasses, or any other difference they might experience. It seemed to me that really connected with the audience as they were finally seeing what the experience might be like to be teased, or even devalued by a society that doesn't tolerate differences. They don't tolerate difference even though (judging by my church, and the average types of people who attend there and extrapolating to the larger population) they themselves have impairments, have disabilities. It was very eye opening to me.

Mark Brown, talked about the image of God in a way that really connected as well. He spoke in reference to Toby Hoff, who had presented earlier in the program and who uses a wheelchair. He said, you might see him as a man in a wheelchair, but God sees him as one created in the image of God and crowned with the honor and glory that comes with representing that image.

The service ended with Mark inviting people to identify with those with disabilities and to evidence their solidarity by coming forward and standing around a table set with bread and a glass of juice where individuals with disabilities were already sitting. Just about the whole congregation came forward and joined at the table, spilling down onto the floor just before the stage. It was very powerful as many among those who came forward were weeping or very emotional. I felt as if the connection had been successfully made between people with and without impairments and people with various disabilities. It was very powerful. I was surprised as the wonderful response from the congregation.

Our question, is what to do next with this outpouring of love and support from our congregation. First of all I think God will bless them for their response, He is working in their hearts. But where to we go next, what do we do with this outpouring as a church. I am looking forward with anticipation to see where our leaders will take us. Please keep our church in your prayers.

McNair