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

Tuesday, January 30, 2007

"Why should ministry to people with disabilities be a priority?"

I was very discouraged this past week. I had to opportunity to meet with a leader in the church about issues related to the church and disability. By the church, I mean the church on a global scale, or the church in the United States. I wasn't talking about just one local church, we were talking larger. The leader made the comment in all seriousness, "Why should ministry to people with disabilities be a priority?" It wasn't a question asking for an answer, it was more a statement of this church leader's position on disability itself. People with disability were not a priority to this person, and her/his question basically was why should it be a priority for anybody? I would have answered, but the situation was such that any response I might have made would only have caused a digging in of the heals. Maybe that is partly why I felt depressed. The unrepresentativeness of my Lord and her/his Lord, Jesus Christ, and my remaining silent in the face of the comment.

I can tell you, that for me to remain silent in such situations is very unlike me, but for some reason I felt I should. I will probably have the opportunity to meet with this leader in the future, and perhaps I will have the opportunity to "bring her/him around" but it was almost breathtaking the ability of this person to simply dismiss people with just a statement. I could have countered by talking about the millions of people just in the United States, let alone the perhaps hundreds of millions in the world.

But that is where we are in the church right now. On a positive note, I think we are on the crest of a wave that is about to break over the church, and Lord willing through the Church, over the world as well.
But when people who are Christians make statements such as that,
I wonder about their faith,
I wonder about their compassion,
I wonder about their love,
I wonder about their trustworthiness,
I wonder about their knowledge of their Lord.
I am tempted to condemn them, but I just wonder. Its like they have given me a glimpse into their sin life, like I was a priest receiving confession, only they don't see their confession as sin. They see their statement like that of a racist sharing a racist joke with another racist. But there is such an assumption that I would obviously agree with their statement. "Of course, all Christians don't see people with disabilities as a priority for ministry." Its like that statement is irrefutable.

Well although I couldn't speak up in that situation (trust me it was very complicated), I will try to do better in the future. I am on a personal mission to refute the statements which have been used in the past, and apparently continue to be used to excuse church leaders from having a heart for people with disabilities.
So if someone says,
"Ministry to people with disabilities costs too much" I respond boldly, "How much does it cost? Do you even know or are you just making excuses?"
"Ministry to people requires a lot of training" I respond boldly, "What training is required to take a person with a disability out for coffee? Do you know anyone with a disability?"
"Ministry to people with disabilities is not a priority?" I respond (or will do better in responding in the future) "Maybe its not to you, but it is to the person you call your Lord...Perhaps you should get to know your Lord a bit better before you make statements that reflect on how he prioritizes people."

Making priorities on some level shows weakness, as I cannot do all things at once. If God does prioritize people, He is a weak God who cannot do for us all, love us all, minister to us all all at once. We need to wait our turn. The God I serve is not a God of priorities. He is all powerful, all knowing all everything. I don't need to wait in line for him to discover me and then make me a priority. He created me the way I am. I wish those in leadership of Chrisian churches would get a better handle on that. Get a better handle on who the God they claim to serve is.


Thursday, January 25, 2007

L'Arche Canada statement relative to Ashley

Here is a statement from L'Arche Canada regarding the "Ashley Treatment". Consider it along with the 1/11/06 and 1/24/06 web entries.

January 15, 2007

L’Arche Canada Questions Ethics Used to Justify “Ashley Treatment”

In the past several days much media attention has been given to the case of a nine-year old Seattle girl named Ashley who was born with static encephalopathy and unable to develop intellectually beyond the age of three months. Her parents, with the support of doctors and ethicists, opted for surgical intervention and hormonal treatments that will keep her small and prevent her from growing into an adult woman. Her uterus and breast buds have been removed and estrogen injections are ensuring she will remain for her lifetime around her present weight of 75 pounds. Ashley’s parents explain their primary concern in this decision was Ashley’s comfort and quality of life, especially as she grew heavier and it would no longer be possible for them to care for her themselves at home.

It is difficult to sympathize with the ethicists and medical doctors who are now promoting the so-called “Ashley treatment.” Ashley’s case does not exist in isolation from human society, and it raises profound ethical and social questions. With the possibility of “designer babies” already on the horizon, it should call us to a much more rigorous public conversation about values and where there is and where there is not a place for medical or surgical interventions. Alarmingly, even before these questions have fully surfaced for discussion other parents are seeking this treatment for their children with severe disabilities.

The term “slippery slope” is often dismissed as fear-mongering, but the fact is that a medical and ethical precedent has been set. We cannot measure the loss to the quality of our humanity as a society that will result from such manipulation of human life and growth.

Also, the implications of condoning the permanent infantilization of a person with a disability are of grave concern with regard to the safety and respect for the dignity of other people born with significant disabilities. People with disabilities have fought hard to change the cultural images which portray them as childlike and passive—images that only serve to further limit their options for friendship and work and to be contributing citizens. This “treatment,” if it comes to be regarded as acceptable, will only reinforce these inaccurate and demeaning stereotypes.

For the family of a child with an intellectual disability there are usually three broad concerns that will determine the extent to which he or she is able to live the fullest life possible: (1) The quality of care and community around the child. (2) The cost of caregivers and practical and technical supports the child will need. (3) The suffering they fear may befall their family member as he or she grows to adulthood without the full range of abilities and mental facility of other adults. Fear that their child will suffer can cause families to limit their children’s options.

Ashley’s parents, who have resolved to keep Ashley at home for their lifetime, clearly had in mind all three of these concerns in making their decision. At one point in their blog* the parents explain, “We tried hard and found it impossible to find qualified, trustworthy, and affordable care providers.” The medical ethics of this case, and the fact that there are other care-giving alternatives aside, this comment strikes at the heart of the pressing need for adequate funding for people with intellectual disabilities. This too is an ethical situation for which we must take responsibility as a society. The challenges parents of children with special needs face are often hidden. Along with the everyday joys of living with their child, many engage in a wearing struggle for financial assistance to provide the care and support that their child needs, and usually they do this with great devotion and enormous self-sacrifice.

As children develop, there are other living options. The experience of L’ARCHETM over forty years in hundreds of situations around the world is that people with a wide range of intellectual and, often as well, physical impairment, can grow to adulthood, flourish, and nurture those around them. For this to happen we need to accept that vulnerability, limitations and even suffering are part of life and growth.

Take Karin** for instance, whose needs for life-long total care are similar to Ashley’s and who moved into L’ARCHE from a nursing home in her early teens. Karin is able to do nothing for herself and receives her food from a tube, but she has grown into a beautiful young woman. Lifts, a special wheelchair and a wheelchair van, and people around her who are attentive to her need to move frequently and to be well-cared for physically, enable her participation in her household and in the wider community. She has genuine friends who like to spend time with her, and she is a member of a dance troupe. Her presence on stage is captivating as she twirls in her wheelchair with her partner. Through her smile and facial expressions Karin seems to convey the full range of human emotions, from love and compassion to fear and anger. One wonders if Karin would be able to do this had she been denied the opportunity to go through puberty. L’ARCHE is by no means alone among good services for people such as Ashley and Karin.

Ultimately, Ashley’s case has to do with the kind of society we want. Our society has a tendency to deny aging and to hide from the reality that we are ultimately powerless and quite fragile beings who need each other. Our lives are a remarkable gift entrusted to us and to others for an uncertain number of years. The person with a severe physical or intellectual disability is put more at risk in a society that is not rooted in awe before the mystery of life itself.

* Ashley’s parents’ blog is at: http://ashleytreatment.spaces.live.com/blog/
** The name has been changed to respect this young woman’s privacy.

Wednesday, January 24, 2007

Please pray for California Baptist University

I wanted to make a request of those of you who read this blog, and have a passion for persons with disabilities.
Please pray for California Baptist University.

At the moment there are some very exciting possibilities in the works here which I believe, have the potential to make a significant impact, long term, on the Church and persons with disabilities. We and those in leadership need wisdom to proceed.

I hope to be able to share with you the specifics of what is in the works, in a month or so. But I would really beg you for your prayers that God's will would be done here.

Thank you.


Comments about the Ashleys of the world

Regarding the story of the little girl Ashley, demeaned with the name, "pillow angel" a term which from a normalization perspective is sick in and of itself, I would like to make two points.

First, we cannot marginalize people and then criticize those who are left alone to care for marginalized people for their decisions. I wonder if the the adults in Ashley's life felt supported in her care, anywhere. Sure the wrongness of the surgeries stands on its own merits. We can criticize them. However, if we hope to avert a rash of such medical treatments toward people who inconvenience their families by their very lives, the community, and I would say the faith community, the Christian Church needs to come along side of those families and individuals who face the challenge of severe disability in their lives and provide support. Why aren’t the little Ashley’s of the world in the Sunday School classes of most churches? Yet we will criticize those who perform abusive surgeries. Where is the church at the birth of such children? Yet we will criticize the decisions of those facing the birth of a child with a disability who choose abortion...at least as a church I hope we will be critical of such people (I'm not sure we actually are). Obviously, the laws are not going to prevent families from stopping tube feeding, or performing radical surgeries on family members. However, if we as the community provide support to people challenged by the unknown of disability in their lives, those faced with the kinds of decisions the medical profession increaingly offers, will be less likely to abort, or create people who are further disabled by surgery, because they do not see themselves as facing their challenges alone. They see the experience of others in their community whose child with disability may be a value added to their families, or their churches or their communities. But those children have to be present and they have to be supported to change the minds of people tempted to do the wrong thing.

Second, the decisions relateive to performing the procedures on Ashely were condoned by a group of medical ethicists at the hospital where the surgery was performed. Well, medical ethicists are lost. I would love to know, for example, how many of those on the medical ethics committee who made the decision to go forward with the surgery, even know a person with a profound cognitive/physical disability. I wonder if any have friends with such disabilities. I wonder if any ever spent the day with a person with a severe disability. Decisions are made on the basis of ideas ethicists have about who those people are, and I would suspect they have largely never gotten past the notion of people with disabilities as “other.” My goodness, the medical profession has become rabid over down syndrome being prenatally diagnosed and those detected being aborted. These doctors are listening to medical ethicists when they say such abortions are humanitarian because they prevent a suffering, or poor quality life.

So lets point out the madness of the reasoning, and the surgery, and those who defend decisions by medical ethicists. But lets also take away the argument that the families faced with the challenges of raising children with severe disabilities are in it alone, by coming alongside of such families with acceptance and support.

McNair (fcbu)

Monday, January 15, 2007

Come as you are... if you are the way I want you to be

It is sometimes hard to believe what people will do within the Christian church regarding people with disabilities. If you follow what I write here, you might think that I overstate the changes that need to occur within the church. Just by way of example, here is an email I received this morning, and my response. I suspect it relates to a student who has some form of learning disability...a mild disability. It is sad but it continues to be the reality.

First the email...
Can someone please provide feedback on the following issue:
Student attends a private religious high school. Even though she has a documented disability, the school will not provide her accommodations in theology classes based on the fact that "Jesus said "come as you are" .
Question is asked Are theology classes exempt from ADA? And what other Bible references may be used as counter point.

My response...
Hello all-
No accomodations for the theology class because Jesus said, "come as you are." I think my first question would be is this person actually serious. Is this some example of a bad joke. Unfortunately I have had sufficient experience with people with disabilities and the Church to know this probably is real. It is particularly troubling that the person teaching this class is teaching theology, not mathematics or reading or something.

Obvious responses come to mind. What if the door was not disabled accessible, or there were steps up to the classroom because the school did not comply with ADA. Would there be a requirement to make the door larger or build a ramp, or is that another example of "come as you are." What if the lights need to be brighter because of a visual impairment, or some sort of audio was needed for the class. Is the answer "come as you are?" Other types of disabilities, such as learning disabilities are not different. But I suppose, the Bible is clear that those with disabilities in the scriptures all always brought themselves to Jesus. No one lowered them through the roof, assisted them to come as they are, or Jesus never went to places where people with disability (like a disgusting, bubling pool) were to help them. Does Jesus ever come as he is to them? Might that example of Jesus be employed as well.

What is so sad about the "come as you are" comment is that it is meant to include every one. Everyone as they are is to be accepted. It is clearly NOT meant to be a command for exclusion.

I have come to the point that I am intolerant (yes, I am admitting I am intolerant) of responses such as the one given. Lets just be honest and say that the teacher doesn't want to be bothered with people with disabilities, doesn't want to do the work (much or little) to accomodate a person who wants to study theology, and that all this other excuse is just a smokescreen for discrimination.

The sad part of this story, however, is that 1) the teacher of Christian theology thinks she/he can make the statement she/he does, 2) such people are teaching our children Christian theology, and 3) this is not totally uncommon within the Church. I hear of such stories and recognize how far we still have to go.

I would refer the teacher to the John 9 passage where Jesus heals the blind man, which states that we must work the works of God, so that God's glory might be seen. What about 1 Corinthians 12? Apparently this teacher doesn't think all members of the body are important, even though Paul says they could be absolutely essential. I am also reminded of Ezekiel 34 where the teacher is like a sheep who bumps out the other sheep. I could go on and on.

Perhaps the best solution would be to introduce that Christian theology teacher to her/his Bible.

Just some quick responses.

This is a perfect example of how we as Christians separate the teaching of theology from theology, or the teaching about love from love, or the teaching about the example of Christ from living the example of Christ. I mean this student is probably a person with a learning disability. That is, she/he had the potential to understand the content of the class, but just needs some accommodations (things like assistance in taking notes, or alternative assignments, or the like). I also think this is a perfect example of why we desperately need people with disabilities within the church (see January 7, and January 3, 2007 entries). They make us live what we say. I remember talking about poverty when I had a homeless man in the group. It challenged me to really examine what poverty is and who poor people are.

I am only pretending to teach about who God is (theology) when my starting point is diametrically opposed to one of the most basic characteristics of who God is (love and acceptance of people)? It is a malaise of the Church.


Thursday, January 11, 2007

AAIDD statement on growth attenuation

You may have seen the recent stories about the little girl who had the medical procedure to keep her from growing.
Go here to read from the father's blog as to why they did the procedure.
Here is another comment from "Not Dead Yet" website.
The American Association on Intellectual and Developmental Disabilities prepared the statement below in relation to this whole issue. It is a very interesting response. I will comment my self in a future blog.


Unjustifiable Non-therapy: A response to Gunther & Diekma (2006), and to the issue of growth attenuation for young people on the basis of disability

The Board of Directors of the American Association on Intellectual and Developmental Disabilities

As leaders of the American Association on Intellectual and Developmental Disabilities, the oldest multidisciplinary association in the United States representing professionals within the field of intellectual and developmental disabilities, we have great sensitivity to the concerns facing parents of children with profoundly disabling conditions. They indeed face many extraordinary challenges as they strive to raise their children, and they should be provided with the supports and services they need to ensure that their children, as any others, have opportunities to achieve all that life has to offer. Naturally, these services and supports include medical and habilitation therapies. We as a society should be supportive of innovative approaches to treatment, but we should also demand a thorough evaluation of potential benefits and balance these against carefully considered risks.

Gunther and Diekema1 have described a controversial intervention they provided to Ashley, a 6-year-old girl with profound and multiple impairments, which they refer to as “growth-attenuation therapy.” This intervention, approved and apparently promoted by the parents, consisted of high doses of estrogen to bring about a permanent attenuation in her size. Together with a hysterectomy and removal of both breast buds, the intention was to minimize the likelihood of a future out-of-home placement by maximizing the future comfort of this child and
ensuring a manageable care-giving burden for parents who wanted very much to maintain their daughter in their loving environment.

The ultimate and worthy goal in this case was to ensure a higher quality of life for Ashley through the avoidance of an eventual placement outside of her family home. As individuals and as an organization, we endorse policies and actions that help families to rear their children with intellectual and other developmental disabilities at home, nurturing their capabilities as well as coping with their impairments. We applaud the efforts of the many caring professionals who are engaged in providing extraordinary care to children with intensive and pervasive support needs and who continue to meet those needs throughout their adult lives. We also recognize the many challenges faced by physicians as they weigh with families the benefits versus costs of various treatment options and struggle with the complex ethical concerns that can arise. Gunther and Diekema, as well as Brosco and Feudtner2, discuss some these issues in the context of growth-attenuation therapy and seek responses from the field to inform future practice. As the current leadership of the former American Association on Mental Retardation and now the American Association on Intellectual and Developmental Disabilities, we view growth-attenuation as a totally unacceptable option. We share the concerns raised by Brosco and Feudtner, and we will add our own to theirs.

In Gunther’s and Diekema’s judgment, growth attenuation offers reasonable expectation of improved quality of life in this case. However, the history of the medical establishment’s involvement in exactly these types of quality of life issues has, as noted by Brosco and Feudtner, led to the support of some very regrettable past policies (e.g., involuntary sterilization, lifelong involuntary institutionalization). All physicians must recognize that the decisions they make will be colored by their subjective views of the status of their patients. In stating that there will be no significant future improvement from her baseline, Gunther and Diekema reveal that they and their colleagues recognize little potential for growth and development of this six year old child. It is not then surprising that they find it “hard to imagine how being smaller would be disadvantageous to a person whose mental capacity will always
remain that of a young child” (p. 1016). The abundant evidence that all children are able to learn and that the cognitive capabilities of children with severe motor impairments can be grossly underestimated were not mentioned, and while we do not pretend to be as familiar with this situation as the treating physicians, we think that extant case histories of people with cerebral palsy incorrectly diagnosed as having profound mental retardation should be recognized and discussed.

Brosco and Feudtner questioned the efficacy of the procedures described by Gunther and Diekema, indicating that there is no guarantee that growth attenuation and hysterectomy will effectively delay out-of-home placement. We agree. Further, because the future development of any six year old child will depend on many factors, the medical, social and programmatic needs of the adult Ashley will become cannot be anticipated with certainty. Over recent decades, the principle has been firmly established that an ever-improving future for individuals with extensive impairments is achievable, and in fact there may be adult programs evolving that will offer these parents options they are not now able to consider.

Brosco and Feudtner next noted that risks of harm from this “heavy-handed” manipulation are unknown for this population, and this is an issue that begs for further amplification. Estrogen has hugely important actions. Even a cursory search of the literature shows that it influences things as wide ranging as immune system function and bone growth3 (e.g., Weitzmann and Pacifici, 2006), neuroprotection4 (e.g., Bryant, Sheldahl, Marriott, Shapiro and Dorsa, 2006), and hair follicle physiology5 (Ohnemus, Uenalan, Inzunza, Gustafsson and Paus, 2006). Further, estrogen is metabolized within the central nervous system throughout life, and the negative effects of its depressed bioavailability on aging are well documented. Thus, this artificial manipulation may have many unforeseen consequences, and while optimism has its place, there is ample reason to suspect that some of these consequences will be deleterious.

Brosco and Feudtner discussed the precedent setting potential for growth attenuation that can lead to misuse, and that the intervention does not really address the core problems faced by families and our society regarding services and supports to affected individuals. These are additional excellent points with which we concur. However, they seemed to accept two critical assumptions that we do not. First, in discussing the potentially detrimental effects of growth attenuation, they argue that imposition of small stature might not be a concern if we truly accept the position of disability rights advocates that there is value in every human life and that the worth of a person goes beyond physical appearance. We certainly view people with disabilities as valued members of our society, but we fail to see anything in the disabilities rights movement to justify imposing constraints on anyone’s development. To argue this point grossly misrepresents the views of the disability community and turns logic on its head.

Second, Brosco and Feudtner seemed to implicitly accept the idea that growth attenuation is in fact a type of therapy. We question this critical premise. Given that therapy is intended to address a condition of a patient, the target in this case would have to be the growth and maturation expected as a consequence of Ashley’s normal development. While there are many other treatments that target aspects of physical appearance, these seem qualitatively different from the present case. Although the closest parallel would be the past exposure of tall young women to high doses of estrogen to limit their height, we see this as a considerable stretch. It seems a bit desperate to refer to a practice that fell out of favor years ago (and would be viewed with extreme skepticism today) in defending these procedures, but even in those past cases the intervention was provided with the assent of the patients and to address specific desires.

Clearly, assent was not obtained from this child, and there was no way to assess her willingness to have her body altered irreversibly. Brosco and Feudtner argued persuasively that growth attenuation has to be considered a procedure that has unknown risks and permanent consequences.

Because there was no urgency in this case, a very substantial burden of proof of benefit should have been imposed before moving forward. We see no such evidence of benefit, and despite description of a committee review process (apparently for future cases), there was no mention of including an independent legal advocate for the child or any other professional with explicit expertise in disability rights and autonomy, nor was it apparent that anyone participating in the process would be knowledgeable about the ever expanding options for in-home supports and services. The lives of parents of children with severe disability are profoundly affected, and these individuals are asked to shoulder exceptional responsibilities for care-giving. They should be supported as they strive to meet the extraordinary needs of their children, and we as a society must acknowledge and value their efforts. We must provide them with the supports and services they need to succeed in what Brosco and Feudtner rightly refer to as their “most admirable of undertakings.” However, growth attenuation of their children should not be included as an option. Under our law, parents are vested with the responsibility for making health care decisions for their minor children, but parental prerogatives are not absolute. Children have their own distinct rights and protections afforded them as individuals established in ethical principles and legal statutes. These rights should be of central relevance in the current situation, yet they did not seem to receive the attention they deserved.

With a damning combination of uncertain benefits and unknown risks, growth attenuation as described by Gunther and Diekema is bad medicine, but this practice has even more troubling implications. By extension, if weight ever becomes a difficulty due to age-associated loss of strength for the parents (rather than obesity of the child), then the rationale would suggest that bariatric surgery or severe restriction in caloric intake would be a form of therapy. If that proves insufficient, the goal of reducing the size of the child could be addressed by “amputation-therapy,” justified by the fact that the patient would never be ambulatory in any event.

Should the child develop behaviors that increased the stresses of care-giving, then it should be perfectly acceptable to prescribe whatever dosage of psychoactive medication would be necessary to bring relief to the caregivers.

It seems painfully obvious that medical practice for an individual can rapidly degenerate if the anxieties of the parents regarding as yet unclear future issues replace the medical best interest of the child as the primary focus, even with the noblest of intentions of all parties involved. We see an enormous potential for abuse here, and given the well-documented history of mistreatment, neglect and devaluation of this population, we are stunned and outraged by the very fact that the relative merits of growth attenuation could, in 2006, be a topic for serious debate in this forum. As described by Gunther and Diekema, it distorts the concept of treatment and devalues the patient’s personhood. While references to slippery slopes should be made with great care, we believe that this practice, if judged acceptable, will open a doorway leading to great tragedy.

This door is better left closed.

AAIDD Board of Directors:
Hank Bersani, Jr. PhD, President
David A. Rotholz, PhD, President-Elect
Steven M. Eidelman, Vice President
Joanna L. Pierson, PhD, Secretary/Treasurer
Valerie J. Bradley, Immediate Past President
Sharon C. Gomez, Member-At-Large
Susan M. Havercamp, PhD, Member-At-Large
Wayne P. Silverman, PhD, Member-At-Large
Mark H. Yeager, PhD, Member-At-Large
Diane Morin, PhD, Canadian Member-At-Large
Michael L. Wehmeyer, PhD, Member-At-Large
Bernard J. Carabello, Presidential Advisor
M. Doreen Croser, Executive Director

1. Gunther D, Diekema, D. Attenuating growth in children with profound developmental disability: A new approach to an old dilemma. Arch Pediatr Adolesc Med. 2006; 160: 1013–17.
2. Brosco J, Feudtner C. Growth attenuation: A diminutive solution to a daunting problem. Arch Pediatr Adolesc Med. 2006; 160: 1077–78.
3. Weitzmann, M., & Pacifici, R. Estrogen regulation of immune cell bone interactions. Ann N Y Acad Sci. 2006; 1068: 256-74.
4. Bryant, D., Sheldahl, L., Marriott, L., Shapiro, R., & Dorsa, D. Multiple pathways transmit neuroprotective effects of gonadal steroids. Endocrine. 2006; 29: 199-207.
5. Ohnemus, U., Uenalan, M., Inzunza, J., gustafsson, J., & Paus, R. The hair follicle as an estrogen target and source. Endocr Rev. 2006; 27: 677-706.

Monday, January 08, 2007

Church of the merry-go-round

Impossibleape, a frequent contributor to this weblog made an interesting comment to the December 12 posting. He writes,
there comes a day when we shouldn't have to be spoon-fed another bible lesson, comfortably entertained and made to feel that our hearing the word (again and again and again) is enough.
He is so right. You see, church is understood as going to a church service and hearing the pastor preach a sermon, singing some songs in worship and then praying. Perhaps we then go to a Sunday school class where we study the Bible some more. We end up like experts on the study of baseball who play very little baseball. I sometimes even wonder at the regular "altar calls" which happen many weeks at church. I would bet that 90% of those in the congregation are already saved.

Is that what church is? Is that what the capital C Church is about? Hearing many sermons, as good as they may be, singing many worship songs, and prayer? Obviously that is a part of what church is, but it definately is not exclusively what it should be. But that is what church has become for too many people. Then someone with a disability comes and the attenders get confused about how they are supposed to do church when a noisy person with a cognitive disability is in the audience. They see the mentally ill person in their midst as someone who needs to be excluded. "How can we get through the lesson on love if that person is so distracting?" "If that person is involved, we can't do church in the way we have always done it?"

I don't think that is what church is supposed to be. Perhaps a small portion, but not the majority. And when we do get people saved, we ruin them by letting them think that that is what church is supposed to be.

Why are churches constantly begging for people to work in the children's Sunday school classes? Why are people with disabilities not a priority for ministry in ALL churches? The problems are related. It has to do with the structures of the church and how they demand something which is not what the church should be.

I personally do not now nor have I really ever understood what worship is. Is worship little more than me becoming emotional at a particular song whose lyrics or music connect with me? Is that what worship is? Should I disconnect my intellect from the lyrics of the music or disconnect my aesthetic appreciation from music and lyrics and try to be swept away by what I am experiencing? Should I actually choose my church on the basis of the style of music presented? Is that what church is? Is that what worship is? Such an approach to church, to worship, is debilitating in that it provides a substitution for a more demanding way of doing the harder worship like taking care of widows and orphans (see James). Don't get me wrong (if you are even still reading), I am absolutely not saying we should not sing songs of worship to God.

But please do not confuse songs of worship with other acts of worship. Singing songs are the easy way to worship. Your singing will be made a more beautiful act of worship if you have worshipped in other ways as well, ministering to those who are disenfranchised, working with children, loving your neighbor. Clapping to the music is more enjoyable if a severely disabled adult is clapping along, off time, with a huge smile on his face.

Sermons and Bible studies are of value in themselves. However, teaching on 1 Corinthians 13 without anyone in the room who is particularly difficult to love, is easy. Is love easy? You might think so.

I don't need another sermon on 1 Corinthians 13. I need people who challenge me to live and love in the manner described in 1 Corinthians 13. By that I am not claiming that I entirely understand the passage. I am saying that I need to put what I do understand about the passage into practice. Challenge me to love a mentally ill woman. Have her in the church in my midst. Have the leadership clamour to understand what to do with her. Then we will all really learn about love, and the extent to which we are willing to love others who are difficult to love. When am I really going to be playing baseball rather than just talking about baseball. What do I do with church structures if I know that there are difficult to love people who are not entirely welcome because we don't know what to do with them under our current structures? Our response is the status quo.

I sometimes feel like I am on a horse tied to a merry-go-round. The horse was desperate to run, but it just kept going around and around, covering the same ground, doing the same thing. Eventually the horse turned to wood and now just mindlessly keeps going around and around and around. It used to be a horse, was originally a horse. But now it is an inanimate object just going around and around and around. It still looks like a horse (it's doctrine is correct) but is it inanimate (it's love is not correct). Maybe life can still be breathed into the wooden horse and it can run once again instead of being bound to the merry-go-round.

The captial C church needs new structures needs new love and inclusion, like the horse needs to get off of the merry-go-round.


Henri Nouwen on the contribution of the marginalized

In preparation for a class I am teaching, I was doing some research on Henri J. Nouwen. He was an amazing man. A professor and author who ultimately met Jean Vanier, and lived in the Daybreak community in Canada (one of the L'Arche communities). Anyway, in doing the research, I came across the combination of one of his sermons and a brief interview with him. I particularly point you to the inverview which is at the bottom of the webpage hosted by "thirty good minutes." I would encourage you to view the entire webpage.

In one part of the interview there, there is the following interchange.
Hardin: We don't see these people as fitting in, do we? We have a misconception about them that is very sad.

Nouwen: It is very true. Quite often people with handicaps, whatever their handicaps, are considered marginal in our society. They don't make money; they are not productive and all of that, but they are the real poor. Jesus said, "Blessed are the poor." Jesus doesn't say, "Blessed are those who care for the poor." Jesus doesn't say, "Blessed are those who help the poor." He says, "Blessed are the poor." That means the blessing of God is right there in their vulnerability, in their weakness, and that is what I experience. God gives enormous gifts to people who come to our community through those who are most weak and handicapped.

Now that is a fascinating read on the words of Jesus. Nouwen sees enormous gifts given to those who are with persons with disabilities just through their presence together. "The parts we think are unimportant are absolutely essential."


Sunday, January 07, 2007

Why I need my brother with mental retardation

In the previous post (January 3, 2003) I questioned the spiritual maturity of those who would not know why they would need their cogntively disabled brother in Christ. This question was raised in reference to the 1 Corinthians 12 passage where it is written that those parts of the body which we may think are unimportant are actually absolutely essential. Perhaps you might not know yourself why your cognitively disabled brother in Christ is absolutely essential. Perhaps you might want to call my bluff.

Well, lets think about this in reverse. That is, rather than starting with the disabled brother and thinking about what he might bring as a body member who is absolutely essential, lets first think about what are absolutely essential components of the Christian faith. Absolutely essential components might be servanthood, faith, or love. I think most would agree that love is an absolutely essential component of the Christian faith. After all, the Bible says, "God is love" (1 John 4: 8, 16). Now we wouldn't look at love as being not important, we would see it as being absolutely essential. However, we might look at those parts of the body of Christ who teach us about love, or demonstrate live as not being important, most likely because we don't know what love is.

People with mental retardation, as a group I would say, love others pretty unconditionally. They as a group really do teach me about wat it means to love others by the way that they love others. They are truly excellent examples to me of how I should love my neighbor.

So lets put this together. Persons with mental retardation are thought by many as not important, not a priority for ministry. They are not considered a critical part of the body. However, they may be the best examples to others of what it means to truly love others, to love God. Therefore, as verse 22 states, "On the contrary, those parts of the body that seem to be weaker are indispensable..." Why might those parts be indispensible? Because they teach us about God. They teach us about God not because of what they cause us to do for them (although that may be a part of it). But more so, they demonstrate for us the most critical aspect of the Christian faith, and that is love. I need people with mental retardation in my church so I can learn about love by watching them love others. I learn about acceptance by watching the way they accept others. I may reject them, but in a very Godlike manner, they will accept me. I may reject them but in a very Godlike manner, they will love me.

I think the Church has not learned a significant lesson about what love is because partly because they haven't had the parts of the body of Christ which whould demonstrate what love is for them.


Wednesday, January 03, 2007


My daughter Amy just returned from the 2006 Urbana missions conference in St. Louis. She showed us a video of clips of the speakers, one of whom intrigued me with his comments. His name is Oscar Muriu and he spoke on the topic of "The Global Church." It is well worth listening to. The link to his presentation is here.

Several of the points he made about the global church touched me in reference to persons with disabilities in the church. He said, the purpose of maturity as a Christian is not independence but interdependence as we are a body. He gave the example of the liver saying "Now that I am all grown up, I don't need the lungs or the body anymore." His point being that as we grow we recognize our need for the rest of the parts of the body. A lack of need for all parts of the body is a sign of immaturity. Should the liver say it didn't need the lungs, we would correct it saying, "No, you just don't understand how things work in a healthy body." Our interaction would be like that with a child who will understand as he grows. Thinking one is independent and doesn't need the rest of the body is a clear indication of immaturity. With maturity comes the understanding of the need for interdependence.

Muriu spoke of his interaction with Western pastors. He would question them asking, "Why do you need the African church?" (he is an African pastor). Their response was that they didn't know why they needed the African church. This once again shows a lack of maturity, a lack of understanding of how the body works. Why does the liver need the lungs? To exchange gasses. Why does he liver need the kidneys? To clean the blood. There are reasons for why parts of the body need each other. The fact that I as the liver don't know why I need the lungs or the kidneys only points to my ignorance and my need for maturity.

Why do I need my cognitively disabled brother in Christ? Why do I need my mentally ill sister? Why do I need my paraplegic brother? If I don't know, as a point of maturity I should strive to find out. Perhaps the best way to get at the answers is to have that person in my midst, to work to include that person.

Oscar Muriu spoke of how the Western church appears to be in decline. I wonder, could it be in decline because it is not healthy because it has never included the parts of its body which would keep it alive? Muriu asked why the African church, for example, would want to drink from the poisoned chalice of Western theology if the result is a declining Western church? Great question. Could a part of the slow poison which is causing the decline of the Western church the lack of involvement of persons with disabilities? I am foolish enough to think it might be, because the body has been attempting to live without all of its parts. Parts that 1 Corinthians 12 states are absolutely essential. How can a body live for long without absolutely essential parts? Perhaps it would gain life if the absolutely essential parts were reattached. Could the church potentially even recover if the parts were remade body members?

Society is gradually on a path to destroy all the parts the church has rejected in the past. The world is killing persons with disabilities through abortion, infanticide and euthanasia. What type of church will survive if there are no people with down syndrome in the world? What type of church will survive if all quadraplegics are assisted with suicide? The world is removing the possibility of being the whole Body of Christ for us and we are complicit in a sort of slow, self-inflicted, church suicide. We are the liver who thinks it doesn't need the lungs.
And the world is willing to take our lungs away from us.

We loose people with disabilities in the world at great peril to the church.