WINGS A FAITHLETTER FOR, BY AND ABOUT UNITED METHODISTS WITH DISABILITIES AND THOSE WHO CARE ABOUT THEM Summer 2003—Vol. 14, Issue 1, No. 53 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: TWO SIMPLE RULES—NO, MAKE THAT THREE SIMPLE RULES—FOR DEALING WITH PERSONS WITH DISABILITIES By Jo D'Archangelis It has come to my attention that able-bodied persons often appreciate guidelines as to how to deal with persons with disabilities. Below are two real-life situations from my own real-life experience, each exemplifying what should not have been done in that situation. After each situation is a statement of the simple rule that should have been followed—but wasn't. In my opinion, Sam (not his real name) really should have known better. He himself has a hearing impairment and has been around people with various types of disabilities, including me. Several months ago, I attended a church meeting at which Sam gave a brief talk. He told us about a recent day in his life when everything seemed to go wrong and he was feeling somewhat sorry for himself. I forget exactly what the situation was, but he said he noticed some people who couldn't read or write, and right away he started feeling better about himself—at least, he could read and write. And then he saw a woman who was blind, and he thought how fortunate he was to be able to see the faces of his loved ones. And, finally, he opened some doors for a paraplegic man in a wheelchair and realized how blessed he (Sam) was to be able to walk. His point seemed to be that there were always people worse off than you, so count your blessings. Simple Rule #1: Do not use people with disabilities as examples of such miserable lives that your life by comparison seems a veritable paradise—especially when people with disabilities can hear you. It only makes us grumpy. For several years I used a wheelchair lift to get in and out of our van. While riding I sat in my powerchair at the back of the van facing towards the front. To exit the van I had to back out of it onto the lift platform which was suspended about three feet in the air and then be lowered to the ground. The platform was only a few inches wider than the chair with about a three-inch rim on each side and a four-inch high metal stop at the rear. Someone, usually my mother, stood at the side giving me directions ("go left a little") and words of encouragement ("you're fine, keep coming back"). I have been using power chairs for nearly 36 years and recently acquired a new chair equipped with a "mini-joystick," an electronic goody consisting of a short plastic stem topped by a small cork-like ball. It is positioned about half-an-inch in front of the left armrest, and I can maneuver my chair with the slightest touch of my thumb and forefinger. It's amazingly easy for me to use, but the control is so sensitive that, if the power is on, a mere piece of fabric brushing against it can cause the chair to move abruptly and unexpectedly. One day a friend named Al (also not his real name) drove us down to San Diego in the van. We parked, and Al, who had kindly driven us in the past and had observed my backward progression from van to lift platform before, helped my mother open the back doors and pull the platform down. I made my usual tentative way out of the van with my mother standing at my right side giving directions. I was almost at the back stop when Al, who was standing at my left side, decided for some unknown reason that I needed assistance and placed his hands on the chair, one hand pushing against my hand on the mini-joystick. My chair started lurching convulsively over to the right. "Take your hand off, take your hand off," I kept saying, but the more I said it, the harder Al pushed! (Al recalls that my voice was remarkably calm at the time and he really didn't understand what I was saying or why. But I wasn't particularly calm; I just couldn't yell!) Anyway, the chair kept careening over to the right, and I could feel it bouncing off the platform rim (thankfully, I was using a relatively low speed at the time). Finally, my mother figured out what was happening and had the presence of mind to reach over and turn off the power. Needless to say, we were all pretty well shaken up afterwards, including poor Al. My mother said I was just "this far" from going over the edge. After that, Al was instructed to stay a good 20 feet away from me whenever I backed out of the van. Simple Rule #2: Do not attempt to assist people with disabilities without first asking or being asked (and even then, do what you are instructed to do and not what you think you ought to do.) Simple Rule #3: Keep your hands off our joysticks. TWO UNITED METHODIST CHURCHES SHARE ACCESSIBILITY AWARD Shepherd of the Hills United Methodist Church in Mission Viejo, California, and Fallbrook United Methodist Church in Fallbrook, California, were selected as co-recipients of the first annual Most Accessible Congregation in the California-Pacific Conference Award. Tom Simmons, Chairperson of the Conference Council On Disability Ministry, announced the selection on June 21 at the California-Pacific Annual Conference held at the University of Redlands in Redlands, California. In addition to a plaque, each church received a cash award of $500. We at Wings add our congratulations to the congregations of Shepherd of the Hills and Fallbrook! RETREAT 2003 REFLECTIONS: THE LORD IS MY SHEPHERD 1. ON BIG TREES, COYOTE CHOIR PRACTICE, AND PSALM 23 By Abby Vincent Thirteen years ago, our Retreat Dean Tom Simmons and other United Methodists in the California-Pacific Conference decided it would be a good idea to send a bunch of willing people with disabilities into the woods for a weekend and see what happened. Though attended by fewer in number than in previous years, the Earl Miller Spiritual Life Disability Retreat 2003, held June 6-8 at Camp Cedar Glen, was still a place where you could stroll and roll among big trees, listen to a coyote choir practice at night, and seek after spiritual truth while having a lot of fun doing it. Rev. Jerry and Juda Carter, coordinators of the Conference Council on Disability Ministry, led the group. Rev. Jerry was an accountant until a seizure caused his brain to lose most of its language ability. Through speech therapy, rehabilitation, and lots of support from friends and family, much of his language ability has been restored. In the process, he decided to become a diaconal minister in the United Methodist Church. Hearing the Carters' story was a real treat. Our spiritual sessions this year focused on the Twenty-third Psalm. We read several versions of it, noticing that the first place the writer goes is to "green pastures" and "still waters." These thoughts have meaning for our fast-paced lifestyles. Often we think work has to come first before recreation. Then we noticed that the Lord is first referred to as "he" and later as "thou" (KJV). Even though it is pre-Christian, this song sings the praises of relationship. Finally, we tried our hands at writing our own version. This was just play, as none of us really thought Psalm 23 needed improvement. Sunday morning we held our worship service in the Cedar Glen chapel, a small, intimate, wooden building equipped with a piano and organ. It was interesting that Rev. Jerry had us passing the peace after confession and the serving of Communion. We left the chapel in a great mood to have the final meal of the retreat and then go forth into the world. Vincent, who is vision-impaired, is a member of The Church In Ocean Park (United Methodist Church) in Santa Monica, California, and has served in past years as a lay delegate to the California-Pacific Annual Conference. 2. PSALM 23: A PSALM OF LIFE By Tom Simmons The 2003 Earl Miller Spiritual Life Disability Retreat was led by the Rev. Jerry Carter and his wife Juda, the Disability Ministry Coordinators for the California-Pacific Annual Conference of the United Methodist Church. Rev. Jerry currently serves as a chaplain at the Lake Forest Nursing Center in Lake Forest, California. Juda Carter works as an Education Standards Coordinator for the Regional Center of Orange County. Her role in that position is to insure that children with disabilities receive appropriate services from public schools. The Carters have worked in the field of disability advocacy for many years. The theme of the retreat was "Jesus the True Vine." The Carters shared messages, lead small group discussions, and used creative writing in the study of Psalm 23. Although Psalm 23 is often read at funerals to provide comfort, it is a psalm of life and describes to us how we should be living our lives. The study of Psalm 23 began with the understanding that God is all we need. Whether we are in green pastures or dark valleys, Jesus the Shepherd remains at our side and that is enough. If we have Jesus, we lack no good thing. But what ultimately matters is not physical comfort but spiritual restoration. When our Shepherd provides spiritual blessings, the goal is spiritual refreshment. Many Christians and many churches have it backwards. Many Christians run around busily doing ministry until they are too tired to continue, and only when they have no strength left do they stop and rest. Christianity is primarily a relationship, not a religion. To have activity without a relationship misses the entire point. Jesus has called us first to worship and secondly to work. In Psalm 23, David describes the joy of being in a personal relationship with God—a relationship that has no end. An amputee, Simmons has served as Dean of the Earl Miller Spiritual Life Disability Retreat since its inception in 1990. He is also chairperson of the California-Pacific Conference Council On Disability Ministry and a member of Arlington United Methodist Church in Riverside, California. I AM DISABLED AND... I am only too aware how much importance mortals give to outward appearances, but you, O LORD, look on the heart. Affirmation #5 adapted from 1 Samuel 16:6-7 (NRSV) by Ken Tittle and Mariposa Ministry and Mariposa Online A SPECIAL BLESSING By Judy Loehr The Ash Wednesday Service provided a moving and contemplative setting for a few hundred people to gather, to hear the Word read and proclaimed, to sing Lenten hymns, to chant Psalms, to pray, and, in protracted periods of silence, to meditate upon the upcoming Lenten season. The liturgy had been carefully, prayerfully, and lovingly planned, with the hope that those in attendance would be moved by this creative expression of worship. As the scriptures were read, Sarah, a 30-year-old woman with a mental disability, watched and listened most intently as her mother read a passage. However, Sarah's attention span waned quickly as the service progressed, and during the times of silence Sarah would leave the front pew, shuffle out the side door, and always seem to return in yet another moment of protracted silence. As part of the planning team for the service, I was particularly sensitive to Sarah's movements and worried that they were distracting other worshipers. As the service ended, the bishop invited those gathered to remain seated following the benediction and to reflect in silence. And there was silence—a deep, expectant silence—but only for a moment. It was then that Sarah shuffled up to the chancel area and in a very loud whisper, said, "Psst! Ms. Judy, come here!" I found myself becoming annoyed. What the worship team had planned and hoped for was happening, but Sarah was disrupting our plans. She was interfering with our silence. "Psst! Ms. Judy, come here!" After Sarah called out to me several times, I finally approached her at the steps of the chancel and asked softly but in a perturbed voice, "What is it?" "Do you love me, Ms. Judy?" "Of course, you know I love you; now go sit down and be quiet!" I said rather sternly. "Do you really love me?" "You know I do; go back to your seat now, we're praying." "Just say my name and tell me that you love me." At that moment I finally realized that the creative power and presence of the Holy Spirit had worked in, through, and among us, not necessarily as we had planned, but as only God could bring about. For in the spirit of that liturgy, Sarah had been transformed and sought a response—a response from someone she knew, loved, and trusted. This is what we all hope and pray for, what God wants for us, what brings healing and wholeness into our hurting world—a yearning for the human touch, a desire to be told that we are loved by God and loved by one another. Sarah was asking for a special blessing which I had never thought to ask for myself. I enfolded Sarah in my arms and held her close to me. "Sarah, I love you and God loves you. You are God's beloved daughter. Go in peace." Sarah looked up lovingly at me and in a loud voice said, "I love you, too, Ms. Judy. Thanks!" Thank you, Sarah! From Alive Now [Sept./Oct. 1999] UMW DISABILITY RESOURCES 1. RESPONSE Audio Cassettes Articles from the United Methodist Women magazine RESPONSE are available on cassette at $12/year (11 issues) for persons with visual impairments. Subscriptions for groups (conferences, audiovisual libraries, districts, local units) who wish to make additional copies available for persons with visual impairments or available on loan are $35/year. Sighted individuals may also subscribe to this service at the $35 rate. Send subscription requests to: Magazine Circulation, The Service Center, 7820 Reading Road, Caller No. 1800, Cincinnati, OH 45222-1800. Tel: (800) 305-9857, ext. 132; Fax: (513) 761-3722. 2. UMW Reading Program Titles for the UMW Reading Program are available in Braille (BR), Recorded Disc (RD), and/or Recorded Cassette (RC) from the National Library Service for the Blind and Physically Handicapped. For eligibility requirements, write to The National Library Service for the Blind and Physically Handicapped, The Library of Congress, Washington, D.C. 20542. For the location of the nearest regional library, call 800-424-8567. Log on to http://gbgm-umc.org/UMW/Reading-Program/ for titles and the medium available (BR, RD, RC). Some titles can be ordered in large print from The Service Center (address and telephone number above). Adapted from the UMW website AWAKENING (A Poem About Being Disabled) By Murielle Minard I grew weary of apologizing To the world And to myself, For myself. My parents said, "We never had any luck." That apology. He said, "You have a nice face, it's too bad you're . . ." That apology. My children said, "Mommy, why are you different?" That apology. I said, "I'm a cripple." That apology. I declare now to hell with apologies! I am God's own, Life's own, My own. No apologies. Minard resides in West Palm Beach, Florida. "Awakening," copyright (c) 2002 by Murielle Minard, originally appeared on the United Methodist General Board of Global Ministries DISC website for disability concerns (http://gbgm-umc.org/disc/). BOOK REVIEW: REMARKABLE BOOK TACKLES TOUGH QUESTIONS WITH IMAGINATION "Naked Before God: The Return of A Broken Disciple," by Bill Williams (with Martha Williams); (c)1998 by William F. and Martha S. Williams (Moreland Publishing House, Harrisburg, PA); 400+ pp.; $11.95 in paperback. From the story of Job to "Why Do Bad Things Happen To Good People?" writers have attempted to answer a fundamental question of theology: Why does a benevolent, omnipotent God allow if not cause the existence of pain, suffering, and evil in the world? I doubt, however, that anyone besides Bill Williams has attempted to answer it with the imaginative mixture of autobiography, pseudo-gospel narrative, and theological treatise that constitutes his brilliant tour de force, "Naked Before God: The Return of A Broken Disciple." On one level, "Naked Before God" is Williams' first-person account of his own life experience as a young married man who earns success as a videogame designer and then enters a Lutheran seminary to prepare himself for the ministry—all this while dealing with the burdensome, even life-threatening, chronic conditions of cystic fibrosis and diabetes. Two of Williams' older siblings had already died with cystic fibrosis, and his struggles with respiratory infection, intestinal pain, insulin shock, diabetic coma, and the often incompatible medical and diet requirements of the dual illnesses are factually and harrowingly described. At the same time, the author depicts himself as one of the lesser-known of the disciples of Jesus who follow him as he travels from place to place, delivering a message which few people seem to "get," including Williams himself. This contemporary but biblically- grounded Jesus is not in Williams' hands a charismatic rock star or hippie savior but an engagingly human Messiah—compassionate, wise, and wryly observant, with occasional flashes of exasperation directed at the disciples who for the most part seek to fashion him in their own preconceived images. Interspersed among these two narrative strands are dollops of theology, poetry, and even some blues lyrics, all written by the author himself. This may sound like heavy going, or a confusing mishmash, but it isn't. Writing with humor and wit and great poignancy, Williams successfully blends 1st-century Palestine and contemporary Chicago, theological discourse and poetic musings into a journey of faith that begins in doubt and questioning and ends in reconciliation. Some readers may not completely agree with Williams' conclusions concerning the nature of God, creation, or the afterlife, and others may consider themselves too theologically-challenged to read his book in the first place (Williams suggests that those readers skip over the theology and go on to the more interesting stuff!). But few readers, if any, will fail to be touched by Williams' remarkable journey of the soul and mind. No matter what their theological stance (or lack of it), physical health (or lack of it), or personal struggles (which no one lacks), they will come to see in his story their own stories of brokenness, vulnerability, "why, God?" questioning, and ultimate discipleship. J. D. PRAYER Reconciling God, when our differences keep us from seeing each other, remind us that in you we may see face to face. AMEN From Alive Now [Sept.-Oct. 1995] 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: Margery Chapman Linda Ahnell Jill Halley Ruth Sciumbato John Henker Rose Heller Norma Frempter Fred & Jessie Fahnestock Betty Salzmann Burt Colby Joe Rollins Virginia Clark Rev. Loyce McWee Rev. Ed Hoffman Ridgely & Janiece Park Edith Parker WINGS: A non-official, non-profit quarterly newsletter published for, by and about United Methodist adults with disabling conditions 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, at 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 those who just prefer computer viewing: (1.) A strictly e-mail version in unformatted text without graphics, and (2.) A formatted version with color graphics available only to those able to open attached files in MSPublisher 2000 format. E-mail Jo D'Archangelis at jodarlis@aol.com to request either, or both, of these versions. Wings Online: Beginning with the Fall 2002 issue, issues of Wings in their entirety may be accessed at www.cal-pac-ccdm.org/. Selected articles from back issues of Wings 1995-98 may be accessed at www.mariposa-ministry.org. Donations: Most of the funding for Wings' publication and mailing comes from reader donations. There are no subscription fees. If you think Wings is worth it, please make a check or money order payable to the "Fallbrook United Methodist Church" (or "FUMC") and mark it "Wings Newsletter." Mail it to the church address below. Basic Angel: $6-$14 Major Angel: $15-$24 Super Angel: $25-$49 Mega Angel: $50-$99 Awesome Angel: $100 or more 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