WINGS: A FAITHLETTER FOR UNITED METHODISTS WITH DISABILITIES AND THOSE WHO CARE ABOUT THEM Winter 2008—Vol. 18, Issue 3, No. 71 Those who wait upon the LORD shall renew their strength, they shall mount up with wings like eagles.... Isaiah 40:31 (NRSV) FROM WHERE I SIT: WHEELCHAIR-ACCESSIBLE ACCOMMODATIONS By Jo D'Archangelis Like thousands of other people in Southern California, my 86-year-old mother and I had to be evacuated from our homes this past October because of the wildfires. But, unlike thousands of other people, we were able to return to homes that had been left untouched by the flames. Nonetheless, evacuation was not an easy process for one woman who walks with a cane (my mother) and another woman who ambulates in a wheelchair (me). My nephew Michael packed us, my hydraulic lift, some medication, and a few clothes (we expected to be gone for only a day or two) into our wheelchair-accessible van and drove us up to Orange County, northwest of San Diego County. Although reportedly no motel or hotel rooms were available in all of Orange County, one of Michael’s friends had found not just a room but a suite for us in Lake Forest at a motel called “America’s Best Value.” More than that, it was—according to the people at the registration desk—wheelchair-accessible! The suite was on the second floor, but that was okay as there was an elevator—a tiny, creaky elevator, to be sure, but it worked. However, after exiting the elevator, we were confronted with, somewhat to our surprise, a ramp–a ramp about 15 ft. long that descended at an angle of 45 degrees (I may be exaggerating, but not by much). I wasn’t about to take my life in my hands trying to navigate this “Plunge Into The Abyss” with my powerchair, so Michael released the gears, turning the powerchair into a manual one, and along with two other people carefully and slowly rolled me down it. Then just before we arrived at the door to the suite, we encountered...a step. It was about 8-in. high, and now three people struggled to get all 350 lbs. of me and powerchair up that step. The entrance to the suite itself was relatively flat and the doorway sufficiently wide (the “wheelchair-accessible” part?). But the doorway to the bedroom was so narrow, I could barely squeeze through it. As it turned out, that didn’t matter as I couldn’t get into the bed anyway. We needed at least a 6-inch clearance under the bed to use the hydraulic lift, and here there was no clearance at all. Fortunately, the couch in the living room was a sofa-bed which, when unfolded, had sufficient clearance. The bathroom, of course, was not big enough to accommodate a wheelchair, but (again) it didn’t matter because I couldn’t have gotten my wheelchair through the doorway anyway. Fortunately (again), there was just enough space to accommodate the lift, and I was able to use the “facilities.” However, Cathy, one of my nieces who was serving as caregiver, had to clamber over the lift and stand in the bathtub next to me to provide any assistance I might need. Finally, after five long days, we received the very welcome news that we could return to Fallbrook. Now everything was done in reverse order to get me out of our "wheelchair-accessible accommodations": back me down the step; push, pull, and shove me back up the ramp, now known as “Mt. Everest”; and descend to ground level in the elevator (which, amazingly, was still working). From this and other travel experiences, I can only conclude that “wheelchair-accessible accommodations” applies just to the wheelchair itself—provided that the wheelchair is a lightweight, manual one that can be easily folded up, carried into the “accommodations,” and deposited in a corner for the duration of the stay. By no stretch of the imagination does “wheelchair-accessible accommodations” apply to us schlubs in the wheelchair. FROM THE BOOKSHELF: RECENT PUBLICATIONS ON DISABILITY AND RELIGION DISABILITY MINISTRIES: "Defeating Depression: Real Help For You And Those Who Love You" by Howard W. Stone, Ph.D., Augsburg Fortress Press (2007). Augsburg Fortress Press, the publishing ministry of the Evangelical Lutheran Church in America, describes this book as “a workbook of ideas for diminishing suffering and increasing joy.” Released in July 2007, this paperback book of 256 pages provides a world of practical information. Dr. Stone, professor emeritus at Texas Christian University, is a pastoral counselor. Among his other works are "Brief Pastoral Counseling" and "Crisis Counseling." For more information on this useful resource, click on www.defeatingdepressionhelp.org. "Special Needs, Special Ministry" by Group Publishing and other contributors. This paperback book consists of true, inspirational stories from families who share the struggles and successes of parenting children with special needs. At the same time, it is a practical, real-world guide for churches that are launching or furthering their development of special needs ministries by offering them the opportunity to learn from the successes and failures of other churches. Find review information and availability at www.amazon.com. THEOLOGY: "Spirit and the Politics of Disablement" by Sharon Betcher, Augsburg Fortress Press. From the Fortress website, we learn: "Sharon Betcher [an Associate Professor of Theology at Vancouver School of Theology] analyzes our world and God's embodied presence in the light of her own disability and the insight it affords. She claims disablement as a site of powerful social and religious critique and reflection. With searing honesty, she reveals how our culture, only recently tolerant and supportive of people with disabilities, still fears them. The presence of disabled persons stands as a rebuke to our images of body and health, to the distorted values of our consumerist culture, and to the globalized economy that embodies those values in unjust structures. Yet…disablement has also revealed powerful alternative understandings of the body and body politic in Scripture, in the actions of Jesus, and in the healing work of the Spirit at work in the world." This 264-page paperback is available for $22.00. Order from Augsburg Fortress, P.O. Box 1209, Minneapolis MN 55440-1209, 800-328-4648. "Theology and Down Syndrome: Re-imagining Disability in Late Modernity" by Amos Young, Ph.D., Baylor University Press (2007). The author is a professor of theology at Regent University, Virginia Beach, Va. Bill Gaventa, with the Religion and Spirituality Division of AAIDD, comments that "this is one of the wonderful crop of books coming out this year and the next!" Yale Divinity School's Stanley Hauerwas calls the book "the most comprehensive analysis we have of the philosophical issues surrounding Down syndrome." For ordering information, contact Hopkins Fulfillment Service, 800-537-5487, M-F 8:30 AM-5:00 PM. Adapted from DISC website at http://new.gbgm-umc.org/umcor/work/health/disc/. HEART OF THE MATTER: A BINDING UP By Barbara A. Chaapel "I heard the woman say ‘There but for the grace of God go I’ as I sat in a puddle of milk on the floor of the grocery store in front of the celery.” “I’ve been in the candidacy process for 10 years, and I still have to take four courses and pass ordination exams before I can even start looking for a call.” “I don’t want to tell them I have MS before they even meet me; people make assumptions that determine whether or not they want to try to establish a relationship.” “In sixth grade I was identified as a non-reader, and I always felt an inch away from being stupid.” “The only elevator in [the school library] was alarmed, and the alarm had to be turned off every time I used it. It was a big deal, so I just struggled up the stairs.” These comments and many like them—woven through “Making Room at the Table,” Princeton Theological Seminary’s fall 2004 conference on theological education and people with disabilities—indicate the honesty, the pain, and the realism of the more than 50 people who attended. What they do not reveal is the hope, the humor, and the love for Christ’s ministry and the church that was palpable in the Cooper Conference Center that day in late October. Students, faculty, staff, and alumni/ae from ten seminaries gathered to talk about issues that affect people with disabilities who want to become ministers, as they try to navigate their way through seminary, ordination, and finding a job. Most participants knew what they were talking about: they were themselves people with disabilities. Kathy Black, professor of homiletics and liturgics at Claremont School of Theology and a United Methodist minister, gave the keynote speech via videotape on a large screen because of her own disability. “I was raised on a toxic waste dump in New Jersey,” she said. “Rather than growing peaches and apples, the land grew metal canisters of stored waste that seeped into the lake I swam in, making it into a toxic soup. It was named the worst toxic waste dump in the U.S.” She contracted a dysfunction of her autonomic nervous system that resulted in what she calls “spells” when she cannot speak, open her eyes, move her muscles, or swallow. “My friends call it ‘forced meditation,’” she laughed. The spells come about twice a week, and flying and time changes exacerbate them, thus the video screen. Called “a hidden disability,” Black’s condition was often unapparent to others. “I hid it and tried to stay out of the public when the spells were coming on. I was embarrassed.” She never brought it up during her ordination trials and lived with it silently for more than 30 years. During that time, she had a lot of time to think about what theology, the Bible, and God had to do with her life. What she discovered was that the first two were often part of the problem. “The church tends to say we need to fix people with disabilities, as in ‘to bind up the brokenhearted.’ That’s what the church does well—to provide a space where the body can cure itself. We start prayer chains, send cards of concern, bring meals, provide transportation to hospitals. “But binding up also means to tie down, as in to oppress and to limit. And the church does that, too. We ostracize people with disabilities. The purity codes in Leviticus make determinations about who is clean and who unclean in order to keep the pure away from those who are impure. Historically, the church has singled out people who were deaf, mentally ill, or who have learning disabilities and excluded them from the ministry.” Black critiqued the New Testament, too, citing its equation of faith with health (“Your faith has made you whole”) and sin as a cause of disability. “We still have our own purity codes, our ugly codes, in church and seminary,” she challenged. But Black added that the New Testament also speaks a positive word. “In Jesus’ day, illness was seen as a communal problem, not just a problem of the individual. When Jesus touched people who were impure, he freed them from isolation; he broke the purity codes that separated people from people.” Excerpted from "Heart of the Matter" on the National Organization On Disability Religion Program website (www.nod.org/religion). IT TAKES FAITH By Cindy Elliott Many say it takes faith to be healed. I believe it takes faith to not be healed. It takes faith to move beyond a strong and healthy body, to give all one has: a word of praise through a cry of pain, crippled hands folded in prayer, thankfulness for another day though it is a day filled with physical exhaustion and pain. From "Moving Beyond The Wrapping of Chronic Illness," "And He Shall Give You Rest," newsletter of Rest Ministries Inc. (Dec. 2002) THE GIFT OF PERSEVERANCE By Bruce Baraw A few years ago I worked in Arlington, Virginia, for a man who hired me largely by reputation. He had never had an employee with a disability. After I had worked for him for several months, one day he said to me: “Everything you do is more difficult and takes you longer than it does for me or other able-bodied people.” Tom was never known for his tact. But what he was saying was that he had just then become aware that everyday activities like getting dressed and going to work are more difficult and often more time-consuming for those of us with disabilities. This was a revelation to him. Most things in my life seem to take longer. Getting dressed, going to work, getting in and out of my van, shopping for groceries, all take longer than for other people. And other facets of life that others might take for granted take longer because of the fear, misconceptions, and prejudice we find in society. I started my career in a position for which I was well overqualified because my first employer feared that I would be incapable or unreliable. So my trip up the ladder of professional success started slowly. I didn’t learn to drive until I was 30 years old. I didn’t get married until I was 39. So I learned early in life that perseverance was necessary. But even when we persevere, sometimes we can get discouraged. Sometimes it just seems like the good things we want—things that we’re working hard for—may never arrive. Sometimes we just don’t want to get out of bed in the morning. We might want to ask: “God, why are you putting me through this?” Whenever I get discouraged or tired, or just need some motivation, I turn to Romans 5:2-5. It reminds me that perseverance isn’t just a good character trait; it is a gift of the Holy Spirit made possible by Jesus’ love for us. With this gift I can go on; I can overcome any obstacle. And we rejoice in the hope of the Glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us. — Romans 5:2b-5 (NIV) A wheelchair-user with osteogenesis imperfecta, Baraw has been employed for the past 29 years as a civilian finance manager for the U.S. Navy. He leads the advisory committee on Camp Cedar Glen, a California-Pacific Conference camping facility in southeastern San Diego County. Baraw is a member of First UMC in San Diego while wife Dee is a member of Pacific Beach UMC where she is employed as the youth director. DOXOLOGY Praise the Lord Praise God in the mighty firmament Praise God for mighty deeds Praise God with withered hands And wooden legs Praise God with expressive bodies Used as instruments For those who cannot hear Praise the Lord with voices that struggle to speak With toes that work as hands With hands that reach out among the doubters To touch and hold and heal Praise the Lord for powerful gifts Bestowed on each of us Praise God for the audio-loop and wheelchair Braille and large print Praise God for ramps and lifts Tape recorders and computers Praise God for dogs that hear And see for others Praise God for doors that begin to open To the light of ability Amid the shadows Of prejudice And preconceived notions About perfection and service Let all of us who live and breathe Use everything we have and everything we are In praising God To the glory of our Lord Adapted from the original produced by the Task Force Ministry on Persons with Handicapping Conditions of the California-Nevada Conference of the United Methodist Church. WHY DO BAD THINGS HAPPEN TO GOOD PEOPLE?: A COMMENTARY By Richard Daggett Editor’s Note: This is the third part of a five-part series adapted from an oral presentation given by Daggett in 1994. It is based on Daggett’s own experiences as a person with a severe disability and on his review of Harold Kushner’s book, "When Bad Things Happen To Good People." PART THREE: GOD’S POWER When Harold Kushner says he doesn’t understand how God could willfully inflict great suffering on good people, his orthodox Jewish friends and his fundamentalist Christian friends confront him by saying that if God does something you can’t understand, perhaps the problem isn’t with God but with your understanding. They say that God is always doing things too wondrous to understand. Kushner’s reply is that, of course, God can do wondrous things, things that he, Kushner, can’t understand. He jokes that his plumber does things he can’t understand either. But that is not the point. If a child falls into a pool and drowns, what is there to understand? If a father is killed by a drunk driver, what is there to understand? Let’s return to Job’s story and the three propositions that underlie it. Proposition Number One is that God is all-powerful. Proposition Number Two is that God is good. And Proposition Number Three is that God gives you what you deserve. First Kushner rejects the thesis of Job’s friends who maintain that Job got what he deserves. Then Kushner goes on to reject Job’s thesis that God is so all- powerful that God doesn’t have to be good. Kushner suggests that perhaps God is not all-powerful. He is great, but he does not control every aspect of life. Kushner asks us to choose: Do we believe in a God who is all-powerful but does not care about suffering or justice? Or do we believe in a God who is kind and just, a God who cares deeply about his creation but is not all-powerful? Which is of greater religious value—to be all-powerful or to be merciful and kind? Do we diminish God by saying that he is not all-powerful? I don’t think so. Consider the opposite: Do we really believe that we exalt God when every time a child dies of leukemia we say that God wanted that to happen, or when a flood kills a thousand people we say it is God’s will? In the early days of public television a play called “Steam Bath” was broadcast. The characters in the play had all recently died, and the steam bath was supposed to be a sort of limbo—a place between heaven and hell. The steam bath attendant was supposed to be God. Every once in a while he would go to the corner of the room and begin pulling levers on a console to direct events on earth. He would say things like, “There’s a black sedan traveling down Highway 36. I think I’ll make it miss the curve and crash over the cliff.” It was an interesting play but bad theology. Kushner relates a story about a friend of his who is a Lutheran minister. The minister was scheduled to conduct a wedding, but a few days before the wedding the groom was killed by a drunk driver. The funeral was held the same day that the wedding had been scheduled, almost at the same hour. When the minister returned to his office, the groom’s fiancé was there. She said, “Pastor, if one more person comes to me and says this was God’s will I’m going to scream. Why are they teaching me to hate God?” But if we cannot bring ourselves to believe that a good God would make these terrible things happen, that God indeed wills these things to happen—then what? (See PART FOUR: ACTS OF NATURE in the Spring 2008 issue of Wings) GOD, WHY? By Celeste Rossetto Dickey Self-righteousness ignited flame Holier than thou Fire Anger explodes within me Burning my soul through and through Unfair, unjust, shouldn’t have Why, disgust, despair, Persecuted, forgotten, My hurting, painful cries God, Why? I yell and shout I demand God’s quick reply Yet the only sounds around Are my angry echoing words Exhausted, I collapse And weep alone in pain My soul empties the fire As my tears douse the flames The smoldering ashes hiss And silence fills my being It is only then I am able to hear God’s still small voice In the quiet, my soul renews Holy Spirit whispering wind Words, answers unnecessary as God’s peace surrounds me Understanding, Forgiveness And Love fill the spaces Doused by cleansing fire Thank you God for your peace Healing my being again From "Alive Now" (Jan./Feb. 2001). Dickey is a school counselor in Oregon. ARE YOU CELEBRATING DISABILITY AWARENESS SUNDAY IN YOUR CHURCH? Disability Awareness Sunday not only celebrates the gifts and graces of persons with disabilities in your church, it also lets the whole congregation and your community know how open and welcoming your church is to all persons with disabilities. Please make sure that Disability Awareness Sunday (also known as Access Sunday) is on your church calendar this year—and every year. PRAYER By Henri Nouwen That's what prayer is. It is listening to the voice that calls us, "my Beloved." HONOR ROLL OF APPRECIATION We thank the following people or organizations whose gifts of time and/or money have made possible the publication and mailing of "Wings": Bill & Ruth Bevil Jill Halley Bill & Wilma Chain Don McIntyre Pat Donehoo Rev. Ed Hoffman Tom Turner John & Catherine Bartoo Holly Weiss Paul & Cay McCracken Lila Lanham WINGS: A non-official, non-profit quarterly newsletter for United Methodists with disabling conditions and all others interested in the issues of disability, accessibility, and the church FOUNDER/EDITOR COMPUTER LAYOUT/GRAPHIC DESIGN: Jo D'Archangelis CORRESPONDENCE: Send all correspondence—including feedback, original writings, items from other sources, and changes of address— to: Jo D'Archangelis, Editor Mailing Address: 592 West Ammunition Road, Apt. 1, Fallbrook, CA 92028 Telephone/Fax: 760-723-2668 (please call before faxing) E-Mail: jodarlis@aol.com E-WINGS: Two e-mail versions of "Wings" are available for those with vision impairments and computer "reading" devices; those who have difficulty handling paper and print pages; those who live outside the USA; and/or those who just prefer computer viewing: (1.) A document version in partially formatted text without graphics available to those able to open attached files in Microsoft Word Document 2000, and (2.) A newsletter-formatted version with color graphics available to those able to open attached files in Microsoft Publisher 2000 format. E-mail Jo D'Archangelis at jodarlis@aol.com to request one, or both, of these versions. Donations: Wings is all-volunteer effort, but financial assistance is needed for printing and mailing costs. Most of our funding comes from reader donations. There are no subscription fees. If you think Wings is worth it, please make out a check or money order payable to the “Fallbrook United Methodist Church” (or “FUMC”), mark it “Wings Newsletter,” and mail it to: Church Address: Fallbrook United Methodist Church, 1844 Winterhaven Road, Fallbrook, CA 92028 Church Telephone: 760-728-1472 Church Fax: 760-728-7433 Church E-Mail: FUMC1887@tfb.com