Tuesday, September 30, 2008

Surprised by Disability, October 2008

Why the parts of the body that seem to be weaker are indispensible.

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 accident 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.