Sunday, October 12, 2008

Surprised by Disability

The attached article was written by Al Hsu, of Intervarsity Press, and parent of a child with Down Syndrome.


When my wife, Ellen, and I received prenatal confirmation that our second son would have Down syndrome, we were concerned but also relieved. Why? Because a previous diagnosis was more severe: that our son's condition might have been, as the doctor put it, "incompatible with life." He told us that we could terminate the pregnancy, but we chose to "do no harm" and prepare for our child's birth, come what may. Several months later, we joyously and nervously welcomed Elijah Timothy Hsu into the world.

Life with Elijah has been challenging but not unmanageable. He has had his share of doctors and therapists. But for the most part, he is a happy and healthy three-year-old who loves Blue's Clues and Signing Time DVDS, roughhousing with his older brother, saying "No!" and giving hugs.

October is Down Syndrome Awareness Month, and the public needs to know that Down syndrome is not nearly as scary as many imagine. Recent articles in both the American Journal of Medical Genetics and Prenatal Diagnosis report that more than 90 percent of pregnancies prenatally diagnosed as Down syndrome are terminated. As prenatal testing becomes normative, expectant couples may be more likely to abort babies who are not exactly what they had hoped for.

Jean Vanier, founder of L'Arche communities, which bring abled and disabled people together under one roof, warns in Living Gently in a Violent World that in a few years there may be no more children with Down syndrome in France because they will have all been aborted. In China, babies with disabilities are often abandoned. Extremist groups in the Middle East have even used people with mental disabilities as unwitting suicide bombers. The church must advocate on behalf of those most vulnerable to exploitation and abuse. Care for the disabled is a global justice issue.

The 2000 U.S. Census found that 19.4 percent of the population is affected by physical or intellectual disability. One in 140 children now has an autism spectrum disorder, according to the 2007 Annual Review of Public Health. Cerebral palsy, traumatic brain injuries, spina bifida, Alzheimer's, and a host of other conditions affect millions. If you don't currently know someone with a disability, chances are that you will.

All of us are only temporarily abled. We are only a car acci-dent or stroke away from disability. As Joan Mahler, coordinator of L'Arche USA, told me, "All of us are abled in some ways and disabled in others. People with developmental disabilities often help all of us understand our own brokenness."

The church must take up Luke 14's call to welcome the disabled to the great banquet of the kingdom. According to the Christian Institute on Disability (CID), perhaps 80 percent of the disabled are unchurched. As disabilities become more common, churches and seminaries increasingly need disability ministries.

When Biola University recently offered its first-ever course on the theology of suffering and disability, registration filled up within one hour. California Baptist University now offers a master's degree in disability studies—the first of its kind from a Christian institution—on campus and online. Joni Eareckson Tada's organization, Joni and Friends, launched CID to equip individuals and churches for disability ministry. Its managing director, Steve Bundy, says, "The body of Christ is incomplete when it does not include the disabled."

Our theology needs to rediscover God's particular concern for and identification with the disabled. We worship a God who both healed the sick and took on our infirmities as the suffering, crucified Savior. Nancy Eiesland, author of The Disabled God, notes that it's theologically significant that Jesus' post-resurrection body still bore the scars.

My wife now uses American Sign Language while leading worship at our church. People have told her that the beauty of sign language helps them experience God. Just as different spoken languages such as Spanish or Mandarin can help English speakers worship God in new ways, so, too, can the languages of the disabled allow us to worship God not only with our lips, but with our hands and bodies as well.

Jesus' ministry of healing gives us hope that the blind will see and the deaf will hear. But that's not all. The scars in Jesus' hands and side are not erased, but transformed into testimony to the Resurrection. We don't know for sure in what ways our disabilities will be healed, but we can have confidence that our resurrected bodies will be even more wondrous than if they had never experienced disability at all.

My family was surprised by disability. Surprised by its unexpected nature, but also by the unanticipated blessings that Elijah has brought into our lives. Down syndrome may well be an effect of the Fall, but by God's grace, it has also become for us a window into the joy of the kingdom of God.

Friday, September 19, 2008

Holland & Hope

Ahh, Refreshing.

So started today's chapel sermon at Western Theological Seminary. Denise Kingdom-Grier, an African American RCA pastor preached a message which called us to allow everyone to use their gifts, those with voices, and those voiceless, those with abilities, and those ablely-challenged.

I am at Hope College / Western Theological Seminary in Holland, Western Michigan to observe the National Council of Churches Disability Policy committee, comprised of numerous denomination representatives, and to start by 3 year term on the board of directors of Friendship Ministries -- the world's largest interdenominational organization devoted to resourcing churches to include people with disabilities.

As principal of Palm View Christian a PK-8 Assembly of God school, I often encourage students to explore Christian colleges with Christian world views. I have opportunities to frequent numerous campuses around the country as I guest lecture or attend conferences. Hope College, known for its most famous and innovative alum, Robert Schuller of the Crystal Cathedral, is at it again. With its new Friendship House, people with cognitive disabilities live in the same complex as regular residential students and become involved in campus life. I am looking forward to the tour this afternoon.

As I walked through the Denver airport to catch a connecting flight, I was intrigued by a bill board which announced that the technologies businesses will rely on for survival five years from now have yet to be invented. The question was then posed, are you alarmed? Or inspired? I have reflected on that statement throughout these proceedings, and with the context of urban elementary Christian education and church growth and mission.

The strategic decisions made today will set the course for history, in our schools, churches, communities, and lives. I don’t know about you, but I’m inspired!

Sunday, August 24, 2008


Imagine a world where people accept those with disabilities.

DJ Svoboda does. A 24 year old artist with autism, he has created a website and books that use his experiences to help others. Portions of proceeds help the Autism Society and his home church, Hope Community Church in Raleigh, NC (pastored by Mike Lee, a Talbot alum)

Check out his story on NBC 17 News.

Visit his website.


Thursday, August 21, 2008

NCC Policy Statement on Disability, the Body of Christ, and the Wholeness of Society

The following is the National Council of Churches statement on Disability adopted some ten years ago. I'll be attending the 2008 conference at Hope College / Western Theological Seminary in Holland, MI on September 20, hosted by Friendship Ministries, (to which I've just been selected to the board of directors.) Interestingly enough, the NCC (to which the Assemblies of God does not belong) is addressing this area, but the NEA, while attempting to in the past, no longer makes an effort.

Movies like Tropic Thunder and it's excessive use of the R-word, re-iterate why the church must be advancing in this area. While boycotts at this level do not really make an impact, the national attention and conversation that was ever so briefly raised was a valuable part of the overall conversation.

The problem is that once a statement is done, actions often cease. My hope is that in this new decade more change will happen and persons with disabilities will be made a greater part of society.

NCC Policy Statement"Disabilities, the Body of Christ and the Wholeness of Society"
Adopted by the NCC's General Assembly on November 11, 1998

"Indeed, the body does not consist of one member but of many." (1 Corinthians 12:14)
One in five Americans lives with an impairment that significantly limits one or more major life activities. Virtually everyone will live with a disability at some time in life. Concepts of justice for people with disabilities have evolved beyond paternalism toward the ideals of full participation and inclusion in all aspects of life. Disability rights and self advocacy movements have emerged.
At the national level, landmark laws such as the Rehabilitation Act, The Individuals with Disabilities Education Act (IDEA), and the Americans with Disabilities Act (ADA) seek to assure the same rights to people with disabilities that are guaranteed to all other people in our society.
The religious community also has taken a number of initiatives. Beginning in 1958 and as recently as 1995, the NCCC has affirmed its belief in the dignity and worth of all people, including those of us with disabilities. Most NCCC member communions have issued statements calling for the full inclusion of people with disabilities in all aspects of church life. In spite of these efforts, attitudinal, communication, and architectural barriers remain. The church has served as a point of entry for many marginalized individuals into the mainstream of society. Now the time has come for the NCC to reaffirm and broaden its commitment to people with disabilities.
This policy statement rests upon four theological principles.

1. All people are created in the image of God
"Then God said, 'Let us make humankind in our image..." (Genesis 1:26) God creates all human beings in the divine image or likeness. This image is not a measureable characteristic or set of characteristics. God's image is reflected uniquely in each person.

2. All people are called by God
"For we are what (God) has made us, created in Christ Jesus for good works, which God prepared beforehand to be our way of life." (Ephesians 2:10) God calls all human beings to express the divine image through their unique characteristics. Each person's characteristics, including disabilities, are inseparable and valuable features of the unique, indivisible person.

3. All people have special gifts
"Now there are varieties of gifts but the same spirit..." (1 Corinthians 12:4) God supplies all human beings with the unique gifts needed to obey the divine call. The gifts God has given to each person are needed by all other people, and no one is dispensable or unnecessary.

4. All people are invited to participate in God's ministry
"To each is given the manifestation of the Spirit for the common good." 1 Corinthians 12:7 God invites all human beings to rely on and participate in the ministry of the church. God continually empowers each member of the Body of Christ to reflect the divine image in ways that will serve and benefit the church and the broader community.

In the light of these theological principles, it is the witness of the NCCC that all human beings, including those among us with disabilities, are entitled to rights in church and society. A life of dignity and respect includes such rights as access to education, health care, useful work, recreation, as well as the right to friendship, spiritual nurture, freedom and self-expression. The rights of each person, including people with disabilities, are equal to and balanced by the rights of others.

We believe the human community in all its forms is accountable to God to protect these civil and human rights. God requires the church to give spiritual and moral leadership to society in protecting these rights. The church must exercise its leadership by its public preaching and teaching but even more by its example as an inclusive community of faith, using the gifts of all its members.

"Now there are varieties of gifts but the same spirit; and varieties of services, but the same Lord..." 1 Corinthians 12:4

NCCC Human Rights: The Fulfillment of Life In The Social Order (Adopted by the General Board, November 17, 1995)
Approved: NCCC General Assembly, November 11, 1998
For additional information:NCC Committee on Disabilitiesc/o Ministries in Christian Education National Council of Churches of Christ475 Riverside Drive, Room 848New York, NY 10115

Tuesday, August 12, 2008

Tropic Thunder Statement

Rayne Project joins many other national groups in the following statement:

We, as organizations and self-advocates representing members of the disability community, recognize the dignity of individuals with intellectual disabilities, the challenges they and their families face, and the meaningful and powerful contributions they make to their families, their communities, and their country,

Acknowledge that individuals with intellectual disabilities have been subject to discrimination, abuse, and exclusion from society throughout history;

Recognize that the more than 200 million individuals with intellectual disabilities worldwide, and more than 6 million individuals with intellectual disabilities in the US, have suffered severe consequences including: institutionalization, physical, sexual, and emotional abuse,denial of education, employment, and healthcare, segregation, and targeted hate crimes;

Acknowledge that "attitudes and expectations of the public, in part, determine the degree to which children, adolescents and adults with intellectual disabilities are able to learn, work and live alongside their peers without disabilities." (President's Committee for People withIntellectual Disabilities, 2004);

Understand that for over four decades, the media has consistently mischaracterized people with intellectual disabilities; (Pardun, 2005);

Realize that over 80% of U.S. adults surveyed feel that media portrayals are an obstacle to the acceptance and inclusion of people with intellectual disabilities. (Pardun, 2005)

Recognize that many people, including those with intellectual disabilities, their families and friends, consider the "R-word" just as offensive as the"N-word;" and

Declare that under the guise of "parody," whether intentional or not,Tropic Thunder demeans, insults, and harms individuals with intellectual disabilities by using the "R- word." Furthermore, it perpetuates derogatory images and stereotypes of individuals with intellectual disabilities including mocking their physical appearance and speech, supports the continuation of inappropriate myths and misperceptions, and legitimizes painful discrimination, exclusion, and bullying;

TOGETHER, we declare our intention to make the public aware of the need to create and foster inclusion of individuals with intellectual disabilitiesas a matter of social justice by:

Boycotting the film and explaining to our nation's children why the film is harmful;

Educating the public, especially young people, about intellectual disabilities through far-reaching awareness campaigns to ban the use of the"R-word," and other initiatives to permanently change attitudes and promote inclusion;.

Calling on Hollywood studios, writers and executives to pledge to make this the final chapter in a sullied history of demeaning portrayals of individuals with intellectual disabilities and assist in public education campaigns;

Requesting that Congress investigate and conduct oversight of how Hollywood portrays individuals with intellectual disabilities and the effect these portrayals have on our nation and around the world.



American Association of People with Disabilities
American Foundation for the Blind
Arc of the United States
Autistic Self-Advocacy Network
Best Buddies International
Council of Parent Attorneys and Advocates, Inc.
National Council on Independent Living
National Down Syndrome Society
National Down Syndrome Congress
Special Olympics

Sign the Pledge Today -- Stop using the R-Word!

Monday, August 11, 2008

Tropic Thunder - What should the response of the church be?

The church and movies have had a fascinating relationsip since the beginning. The 1950's finally saw movies on Sunday during traditional church times. Since then, those of us who enjoy movies, put up with a lot of stuff in them that don't necessarily fit our belief systems.

Movies like Facing the Giants or the new Fireproof movie starring Kirk Cameron are attempts at the church to develop quality movies that express Christian values. (non, really of even near Oscar performances).

But then occasionnally comes a movie that is so over the top that even many within the secular field are concerned. While I'm a fan of spoof movies as much as anyone, occasionally humor gives way to viciousness. Such is the case that has happened with Tropic Thunder. A whole class of people become the express butt of jokes which denies peoples humanity and spirituality.

As many have heard by now, the largest disability organizations in the country are organizing an unprecedented boycott of this movie. Why Steven Spielberg, who got it so right with Schindler's List is now perpetuating such bile sterotypes is beyond me.

Yet the real question is what should the church do? The problem is that the church has abdicated for the most part it's role in the life of persons with disabilities. It becomes a silent complicent partner with the perpetuation of such myths by not having people with disabilities as part of its daily congregational life. If the Christian world wants to do something in response to this movie, it needs to begin examining itself and seeing how it can change first on Sunday, before it can it expect its people to change in the theater.

Saturday, April 05, 2008

One if by Land, Two if by Sea


The land of patriots, puritans, and preachers.

I'm here for theEC conference (Council of Exceptional Children) - a 6000+ crowd of special educators. I'm also representing NACSPED -- the National Association of Christians in Special Education, as well as exploring how our small Christian school can make a contribution in our local community.

During free time, I've seen nearly 400 year old historical items, Ben Franklin's parents grave, Paul Reveres grave, the old churches.

I've seen 300 year old cathedrals with full color digital print missional banners waving in front.

The church keeps re-packaging its message for a new world.

Boston probably isn't known now for its puritans or preachers now. But let me tell you of the new breed of preachers -- Christians in special education.

Somewhere along the line we Christians got it in our head that only the preacher can do ministry. Somewhere we forgot that the church is people not a building we go to.

One PHD psychologist with experience in behavioral issues in autism said he was a Christian, but how could he use his faith with his training. He was astounded that he could actually ask the pastor if there were problems with Johnny in the SS class. He walked away coming up with a list of what he might be able to do -- to impact his community.

Stories after stories.

light bulbs came on.

Then I heard the testimony of the year.

Friday night, we went to dinner with Erick Carter, author of Including People with Disabilities in Faith Communities. Dr. Carter is professer at the Badgers house - University of Wisconson, did his PhD at Peabody Institute / Vanderbilt in Nashville (the place for a special ed doctorate) and his undergrad at Wheaton. Furthermore, the book was published by a secular printing house.

But this almost didn't happen.

You see, Erick, like many 19 year olds, was failing out of college, arguing with his parents, was not a Christian and needed a summer job.

So he signed up for a camp counselor position. When he got there he was assigned to the disability group. He almost left, but decided to stay. During that camp, the persons with developmental disabilities began to teach him about Christ. He became a Christian, and changed his journey.

The fork was half way to my mouth. I said -- BACK UP. Who led you to Christ? He repeated his answer -- persons with developmental disability.

That part's not in the book.

Look up at the tower, the lanterns are flashing... the new preachers are coming, and they have disabilities.

Sunday, March 30, 2008

All Cracked Up

Eggs. Nope, I'm not talking about Easter.

In sign language, there is a sign for eggs. At least I presume that my daughter taught me the correct one. With hands together, the movement looks like one is cracking an egg.

Today, she cracked eggs with me. She had already gotten the carton out of the fridge, opened up the drawer to get a mixing bowl and was ready to go for it.

This time I let her.

Carefully, she tap-tap-tapped the egg on the glass bowl, cracked it open and then put the egg shell away. 7 eggs later, she was done...and there was no mess. Together we mixed them, scrambled them, and fed everybody breakfast.

She knew what she needed to do, and did it successfully.

Yeah, I'm probably overprotective, I always step in and take care of it. I guess she knew how to do it by watching me.

And here I'm the one telling pastors to let people with disabilities step forward and serve, and minister, and be part of the church.

I don't think most churches are against people with disabilties, they are just overprotective. Maybe its time we relax, and let people engage in their gifts. Afterall, they've been watching us.

Together, we can all be cracked up.

Saturday, March 29, 2008

Am I getting Younger Yet?

This week has been fun. First, there's Easter -- He is risen indeed. Second, there was no school, yeah! Third, So Cal District Council happened in Anaheim with Mark Batterson and Reggie McNeil. Fourth -- Got the Knotts Berry Annual Pass, and Finally, volunteered to take the youth on a video scavenger hunt.

you see my goal this year has been to get younger... I got a facebook, a my space, and I'm hanging out at youth group.

What does this have to do with disabilities?...I'll get to it.

Our first mistake was to only have a couple video cameras, so it ended up being 20 boys vs 20 girls. The guys all headed into a parking lot to start. Within 30 seconds the LA County Sheriff's were asking what we were doing. (Note to self: Best not to do something in a gang shooting hotspot)

I'm 15-20 years older than anyone else and it's not even my event. My mind flashes a number of scenarios. The youth pastor stated what church we were with and what we were doing. The deputy asked if we knew another deputy... and we did. He sang "bad boys" with us, flipped on his siren and we got it on tape.

But here's my point. We made a deliberate move to integrate the church, welcome youth, welcome people with disabilities, and welcome the neighborhood. We became incarnational and missional, and made our school the same way.

Last year, my school chapels included speakers from 3 major disability organizations. We put together a Habitat for Humanity event in conjunction with the sheriff's. The local Five-Oh, knows that we are the place to send people for help.

This next generation is key for the disability community. The generation of noblesse oblige is gone. The ones that took to heart the messages of JFK and Dr. King are retiring. And the bulk of them don't know what to do with today's young kids.

Yet this is the generation which wants to see real religion, do it, feel it, be it, not only believe in it and be empowered by the Spirit. That's why the CIT program of Special Touch is critical. Because the call of Christian Compassion and the power of the Spirit, when combined are unbeatable.

Oh yeah... the girls did even better than we did and won.

Monday, February 25, 2008

Reflections on AG Disability Paper

The AG published an opinion paper on disabilities nearly 8 years ago. Yet a small sampling of AG churches show there is not many with full fledged ministries. Of course, the AG also has a paper on healing, and yet many churches don't have a healing ministry.

In other forums, I've argued against some of the stances of other position papers. I would presume there are those that can articulate an argument against this one as well.

Many would presume that positions on healing and disability are mutually exclusive. After perceiving the lack of both of these ministries, I would probably argue they go hand on hand. After all, can't the same God who uses healings to bring people to faith through a demonstration of power, also use those with disabilities to bring people to faith through a demonstration of patience?

Read the paper, and then check out a local disability ministry near you.

-- Marvin

Monday, February 18, 2008

It's Training Time

In the next few months, I'll be busy. Training others, Getting Trained, and Training others some more. In Education, we call this professional development. In the church, we call it discipleship. Discipleship has become news again in the Christian Community, rather the lack of it. Discipleship and Spiritual Disciplines go hand in hand. Spiritual Discipline without Fruit is useless.

My friend Chris Huertz chose to pursue incarnational ministry with the poorest of the poor in India. The organization he founded is now present around the world. What is the relationship of discipleship and incarnational ministry?

In the next few weeks, I will be challenging congregations & pastors alike to step out of comfort zones and become incarnational with disability ministry.

Feel free to contact me if you are interested.

My Schedule --
March 3-7 -- Southern California Sections (Assembly of God)
March 8 NACSPED Conference -- Azusa Pacific University - Azusa, CA
March 24-26 SoCal Assembly of God District Council - Anaheim, CA
April 2-6 -- Council of Exceptional Children Conference - Boston, MA
April 10-12 -- Special Touch Expose, Waupaca, Wisconsin
April 21-23 - NorCal Assembly of God District Council
May 28-30th -- AAIDD Conference -- Washington, DC

Monday, January 21, 2008

Special Touch Camp finally coming to SoCal

It's been 4 years since I first met Charlie Chivers at a CCPD conference in Indianpolis. We are glad to finally see a Special Touch Summer GetAway Disability Camp arrive here in Southern California. Thanks to the SoCal District of the Assemblies of God, the cost for the 1 week camp is only $395. That's unheard of folks! A typical day camp costs between $150-$200 out here.

I have attended camps in both Wisconsin and Minnesota. I served as a one-on-one caregiver once. It's an amazing experience. You would think a parent of a child with disability might get bored, but it was refreshing to my spirit too!

I've looking forward to coordinating it this year. If you would like to help out, contact me.