WINGS A FAITHLETTER FOR, BY AND ABOUT UNITED METHODISTS WITH DISABILITIES AND THOSE WHO CARE ABOUT THEM FALL 2001–Vol. 12, Issue 2, No. 46 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: A MATTER OF CONTROL By Jo D'Archangelis Most people with disabilities have felt it at one time or another: the loss of control over one's life. The body, or the mind, responds in unexpected ways or doesn't respond at all. We depend on all-too-human beings who may not show up in the morning to get us out of bed, or on mechanical/electronic devices which rust out, short out, or glitch out at the most inopportune times. We feel frustrated at best or at worst feel that our world is rapidly falling apart. Of course, we are not the only people who at times experience this loss of control. Everybody, disabled and non-disabled alike, has (although the stiff-upper-lip types may refuse to admit it, even to themselves). Unemployment, illness, broken relationships, especially when seeming to occur with no reason or warning, can send anybody's life into a tailspin. Our responses to this loss of control are varied: from becoming inflexibly obsessed with routine, habit, and schedule, to learning to adapt by fixing those things that can be fixed and accepting those things that cannot; from becoming manipulative and coercive toward others, to initiating action on behalf of others and helping them bring their lives under control; from passively surrendering autonomy to the will of others who promise security, to asking God for help in working through the chaos. Recently this feeling of loss of control over our lives was experienced on a national scale with the jetliner bombings of the World Trade Center and the Pentagon. All of us found our safe and secure (or so we thought) world suddenly thrown into havoc by forces over which we had no control. It was a movie scenario, not one comprehended as real even as the terrible images flashed repeatedly across our television screens. A small band of Islamic terrorists kill nearly 6000 people in the name of Allah—yet another example of how human beings can commit the most horrendous actions under the delusion that somehow it will please God. Our government responds by bombing the impoverished country of Afghanistan to smithereens in the name of Democracy and Freedom—as though the terrorists' object is to turn us into a repressive Islamic state. "True believers" do not seek to change or convert the Devil but to annihilate him. We all want, indeed need, to be in control of our lives, or at least to give the appearance of being in control even if what we do only leads to further chaos. To bring order into our disorderly existence, we perceive things as black-and-white instead of in the murky grays of ambiguity and un-easy answers. We characterize conflict as absolute Good vs. Evil instead of the more realistic Better vs. Worse. We make moral judgments without discrimination or distinction ("What we do is just as bad as what they did"). Most of all, we think we live in a world of predictability and are shocked, shocked, to find that we don't. It is at those times that we come to realize, if we are at all open to larger truths, that the only absolute certainty in life is God and his regard for us poor, benighted creatures who create monsters out of other human beings while at the same time failing to acknowledge the monsters within ourselves. So much of what goes on in the world seems so far removed from God's will, I find it hard to believe that God, as the song says, "has the whole world in his hands" (except perhaps in some ultimate, Final Judgment sense). What I do believe is that if I am able to turn my individual little world over to his control, God will, as another song puts it, bear me up on "eagles' wings" and hold me "in the palm of his hand." I may not be protected from the chaos of life, but I will be unconditionally loved and continually forgiven. And that is certainly (absolutely, positively, definitely) more than I deserve. PSALM OF COMFORT The Lord is my constant companion; There is no need that he cannot fulfill. Whether his course for me points to the mountaintops of glorious ecstasy or to the valleys of human suffering, He is close beside me. When I tread the dark streets of danger, and even when I flirt with death itself, He will not leave me. When the pain is severe, he is near to comfort. When the burden is heavy, he is there to lean upon. When depression darkens my soul, he touches me with eternal joy. When I feel empty and alone, he fills the aching vacuum with his power. My security is in his promise to be near to me always and in the knowledge that he will never let me go. Anonymous ALL (WELL, MOST) ARE WELCOME TO WORSHIP! By Karen J. Zielinski Anne Straub has MS, and for several months of Sundays she parked her electric cart on the sidewalk in front of her church and sat there for the duration of the service because she couldn't negotiate the eight steep, "handrail-less" steps leading up to the door. She also had to get word to the usher: "I am out here; please bring me communion." Her church, due in large part to her dedication and vision, is now accessible. In 1987, Straub—a wife, a mother of two grown children, and a former social worker and counselor—and her family began attending St. Boniface church, which had an imposing front stairway, no handrails, and then a few more steps into the church. The first thing she told the pastor and staff was: "Our parish mission statement says, 'We are a welcoming community,' but I don't feel welcome. The church is not accessible to me." Many people with disabilities have spiritual needs that are not being met because their places of worship aren't accessible to them. When the Americans with Disabilities Act was signed in 1990, it provided equal opportunity for people with disabilities and guaranteed that they wouldn't be denied employment or promotion because of disabilities alone. It also promised access to transportation services and public accommodations. But it doesn't—as yet—apply to houses of worship. Straub joined a church committee of like-minded people, and they drew up preliminary plans to make the church accessible. Then they contacted the Open Congregation Group, an organization that helps places of worship become more accessible. But the issue of available funds reared its ugly head. Although the staff at St. Boniface sincerely agreed about the need for access, ultimately, nothing was done. That's when Straub started parking out in front. Finally, she gently told the church pastor and staff, "If it was one of you who had to use a wheelchair or cart to gain entry to the church, there would already be a ramp in place." Because Straub didn't give up, her church is now accessible, with a ramp from the street right up to the front door. And there have been other, more recent changes: sanctuary access, a listening system for the hard of hearing, large-type print for programs and bulletins to help the visually impaired—and permanently affixed pews are being replaced by chairs, so that people with disabilities can sit wherever they want, instead of in a wheelchair ghetto. Now, religious leaders and the National Organization for Disability (NOD) want to add "accessibility to places of worship" to the Americans with Disabilities Act, to expand the participation for 54 million Americans with disabilities in all aspects of community life…. According to Lorraine Thal, coordinator of the [Accessible Congregations Campaign, sponsored by the Religion and Disability Program of NOD in Washington, D.C.], "Access to worship for people with disabilities is just as important as access to education, employment, transportation, health care, and recreation" .... There are other goals and themes to this campaign. Thal commented, "One of the most important accommodations that you can offer to a person with a disability is friendship. Another is to create an atmosphere of love and acceptance, so that there will be no shame attached to having a disability. We hope to create a comfortable at atmosphere in places of worship where someone can ask for assistance without feeling like a nuisance or a burden." The Accessible Congregations Campaign's motto is Access: It Begins in the Heart. And, as Straub proves, "If you build it, they will come." For information on the Accessible Congregations Campaign, contact Lorraine Thal, telephone: 202-293-5960, fax 202- 293-7999, TDD: 202-293-5968, Website . InsideMS [Fall 2000]; Karen Zielinski, a Franciscan sister, has lived with MS for over two decades. HISTORIC "OLD STONE CHURCH" NEEDS ACCESS In 1994, "Old Stone Church," otherwise known as the United Methodist Church of Cucamonga (Calif.), closed its doors to retrofit the 93-year-old structure to meet earthquake codes and to upgrade its electrical and heating system. Several years of work and hundreds of thousands of dollars later, the church is ready to reopen its doors. But members with mobility problems cannot climb the steps; a handicapped ramp and new front doors are needed. "Since we all left the building together, we will all re-enter the building together," said Arnold Brown, renovation chair. The church is asking for contributions from other churches in the California-Pacific Conference to meet the $15,000-$20,000 estimated cost of the accessibility project. Please send contributions to: United Methodist Church of Cucamonga, 7690 Archibald Avenue, Rancho Cucamonga, CA 91730. Based on an article in the Aug. 30, 2001, edition of Circuit West, the newspaper of the California-Pacific Conference of the UMC. AN INFLICTION OF HEALING By Tina Maria Heron I was born with a spinal deformity, a partial paralysis, and short tendons in my feet and legs. I grew up in a Children's Home and was not told that I even had a disability, least of all the causes for it. All I knew was that I had difficulty in walking and needed operations. As I grew, I experienced intermittent pain and an inability to perform physically. I struggled with sports activities at school and was called "lazy" and accused of "not trying." It was only after I was married and eight-weeks pregnant that the nature of my problems came to light; the pregnancy had put pressure on my spine and exacerbated my congenital condition. Slowly over a period of five years, my mobility worsened and I developed chronic pain. For some time I walked with elbow crutches, but my mobility continued to degenerate until it was suggested I use a wheelchair. I was horrified at the thought of a wheelchair but at the same time realized I could no longer cope with the level of pain I was experiencing. I reluctantly yielded to the idea that a wheelchair might help improve the quality of my life until the doctors sorted my condition out. During those five years, my husband, diagnosed as epileptic and suffering from a heart attack, became disabled too. It was unimaginably difficult to cope with all this while raising a young, active child. My doctor referred me to different specialists. With each new appointment my husband Dave and I prayed for a positive outcome—a diagnosis and treatment and healing. But after each new consultation my hopes were dashed leaving me in despair. I began to see my problem in a different light, asking myself what was my sin, what had I done to deserve such harsh punishment. At the same time I entered the world of "The Disabled," where I encountered the same attitudes among those who were able-bodied that I myself had once inflicted on those with disabilities. I was still the same person, so why were people treating me differently? My wheelchair was a symbol of disability, and I was treated with contempt. I hated being seen out in public. I hated being pushed around. I was so angry that in public places if anyone crossed me they were subjected to verbal abuse. The reality was that I was experiencing bereavement, a profound loss that made no sense. I still had my legs, and they still worked after a fashion. But I had lost the ability to do all the things I once took for granted—walking in the park, playing with my son, shopping, hanging out the wash–the list was endless. As with most bereavements, the healing process eventually began. I started to notice the benefits of my wheelchair; the bruises from continually falling over disappeared, and my pain levels decreased. Still I hung on to the need to receive healing. Everyday I prayed for a miracle. One day I picked up my Bible and reread the story of Jesus in the garden of Gethsemane. A couple of phrases jumped out at me bringing tears to my eyes: "My soul is crushed with horror and sadness" [Matt. 26:38] and "Your will, not mine" [Matt. 26:39]. I read them over and over again, and after much soul-searching I became convinced God was telling me that enough is enough, that it was time for things to change. Reluctantly, I prayed a new prayer, not for healing but for God's will to be done in my life. It wasn't a prayer that came easily, and I prayed it constantly trying to convince myself that this scripture was God-given. A week later I still had doubts so I prayed that God confirm his message. I picked up my Bible, and it fell open to the story of the woman who touched Jesus' clothing and was healed [Luke 8:40-48]. The story reflected my need for healing, but it was the last line of the story that gave me the confirmation I needed: "Your faith has healed you. Go in peace." It was at this point I was healed. My anger, resentment, and emotional agony were replaced with acceptance and inner peace. The wheelchair became a tool to aid my mobility instead of a symbol of disability. Like any life event, being disabled is a physical, emotional, and spiritual journey that must be traveled with no shortcuts and very few dramatic turnarounds. Often able-bodied Christians will try to inflict healing on those of us with physical impairments without asking themselves first what God's will is for us. A well-meaning Christian once told me, "You can't be disabled and a Christian. If you are right with God, you can claim his promises and be healed." To this I can only respond that God has revealed his will in my life. I am disabled, and I am a Christian, and God will use me the way I am. Heron, who lives in Barnsley, Yorkshire, England, is now a Methodist and active in Through the Roof, an organization encouraging the participation of disabled Christians in worship and fellowship. She recently began a Disabled Christians Fellowship group in her hometown and is working on a database to assist people with disabilities in finding accessible and hospitable places of worship. Her e-mail address is: Tina Marie Heron@aol.com. (We first printed the poem below in an early issue of Wings when our readership was minimal. We are re-printing it in order to share with the many readers who have come on board since one of our favorite poems about "disability." —Editor) BREATHING UNDER WATER By Carol Bialock I built my house by the sea. Not on the sands, mind you, not on the shifting sand. And I built it of rock. A strong house by a strong sea. And we got well acquainted, the sea and I. Good neighbors, not that we spoke much. We met in silences, respectful, keeping our distance. But looking our thoughts across the fence of sand. Always the fence of sand our barrier. Always the sand, between. And then one day (and I still don't know just how it happened) The sea came. Without warning. Without welcome even. Not sudden and swift, but shifting across the sand like wine, Less like the flow of water than the flow of blood. Slow, but coming. Slow, but flowing like an open wound. And I thought of flight, and I thought of drowning, and I thought of death. But, while I thought, the sea crept higher till it reached my door. And I knew then there was neither flight nor death nor drowning. That when the sea comes calling you stop being good neighbors, Well acquainted, friendly-from-a-distance neighbors, And you give your house for a coral castle And you learn to breathe under water. From Good Friday People by Sheila Cassidy, copyright (c) 1991 by the author, published by Orbis Books. CONFERENCE TASK FORCE MEETS TO DISCUSS DISABILITY MINISTRIES COORDINATOR A step toward giving United Methodists with disabilities a stronger voice at the conference level was taken at the 2001 California-Pacific Annual Conference of the United Methodist Church when Lupita Alonso Redondo, lay delegate from Calexico UMC and co-director of Mariposa Ministries (a peer-counseling ministry for people with disabilities), moved that the position of Coordinator of Disability Ministries be established. No action was taken on the motion itself, but Marilynn Huntington, Conference Director of Connectional Ministries, announced that a volunteer position would "immediately" be created. On September 29, church disability leaders met at Fallbrook United Methodist Church to form a Conference Task Force on Disability Ministries. The purpose of the Task Force was to work up a job description of the new position. However, after much discussion, it was unanimously agreed that the position of Coordinator of Disability Ministries had to be a paid position if it were to attract applicants with the professionalism and experience needed for the job. The first priority of the Task Force was therefore to locate available funding sources within the Conference. Once funding was secured, the search for qualified applicants would proceed. It was also proposed that a video be produced, with the assistance of the Conference Media Center, depicting the many forms of disability ministry and how they could be further developed and expanded to meet the physical, communicative, and spiritual needs of all United Methodists with disabilities in the Conference. The video could be shown at the 2002 California-Pacific Annual Conference as well as at district and local church workshops and meetings. The Task Force is scheduled to meet again at the end of November at Shepherd of the Hills United Methodist Church in Mission Viejo. For more information, contact Tom Simmons, Task Force Leader, telephone: 909-444-7066, or e-mail: tommyboy_92503@yahoo.com. IN REMEMBRANCE: GENEVIEVE DALLKE Genevieve Dallke was a young wife and mother when she contracted polio during one of the '50s epidemics. From her wheelchair she continued to raise a family of three and to serve in different capacities in the United Methodist churches her minister husband, Hal, was appointed to over the years, even though the churches, as well as the parsonages, were often inaccessible. Gen helped organize the first Earl Miller Disability Retreat in the California-Pacific Conference in 1990. She was truly a "roll model" for many of us and will be greatly missed. J. D. 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 Rose Heller Lucille Fleming Ruth Sciumbato Mary Klein Virginia Clark Louise Cook-Stolte Rev. Ed Hoffman Rev. V. Lu Wilson Diane Yetter Harriet Aaron Richard Tanner Charlotte Tarr Marie Losh Jackie Goya Dulcie Henwood Edith Cornell 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 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: An e-mail version of Wings posted quarterly in unformatted text without graphics is available by contacting Jo D'Archangelis at JODARLIS@aol.com. WINGS WEBSITE: Selected articles from Wings issues 1995-98 may be found at www.satcom.net/mariposa/find_wings.html. DONATIONS: Most of the funding for Wings' publication and mailing comes from reader donations, so 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