WINGS A FAITHLETTER FOR, BY, AND ABOUT UNITED METHODISTS WITH DISABILITIES AND THOSE WHO CARE ABOUT THEM Winter 2004—Vol. 14, Issue 3, No. 55 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: WHY SHOULD WHEELCHAIR ACCESS STOP AT THE CHANCEL STEPS? By Jo D'Archangelis I know of a church, a fine church and in many respects a disability-friendly church, but a church that has struggled over the years with the issue of chancel accessibility for those who are mobility impaired. Right now the chancel area is only reachable by three steep steps leading up from the sanctuary floor. Past proposals to install a ramp or a wheelchair lift have been met with various objections, including "it's too expensive," "it would spoil the look of the church," it's unnecessary," and, best of all, "it would change the church." Recently the Board of Trustees was asked to consider applying for a grant from a church funding agency to help with the installation of a portable wheelchair lift. This suggestion, like all the others, was met with a noticeable lack of enthusiasm. Instead, the Trustees decided upon a two-part solution to this pesky problem. First, a railing would be installed for the merely wobbly among us to hang on to as they struggled up and down the steps. Second, a video camera would be stationed to take images of whatever was happening on the sanctuary floor in front of the chancel, and these images would then be projected onto screens in the chancel area. On those occasional occasions when someone who could not access the chancel, even with railing, gave a presentation from the sanctuary floor, he or she would be fully visible to the entire congregation. The projection proposal, it was said, would eliminate the "urgent need to actually move people into the chancel area" by meeting one of the "main arguments" for chancel access–the need for visibility. So in the future if someone in a wheelchair should want to sing in the choir, he or she will stay on the sanctuary floor while his or her image is projected onto the screens during the anthems (this may be a bit disconcerting for the choir director, but presumably he'll get used to it). Or if someone with impaired mobility should someday be appointed as pastor to the church (hey, it could happen!), he or she may have to preach, teach, and pray from the sanctuary floor, but his or her image will be fully visible to the congregation and that is the important thing. This reasoning is either very disingenuous, or very audacious. One might just as easily argue that there is no urgent need to actually move people with mobility impairments into an inaccessible sanctuary because videotapes can be made of worship services which can be viewed in the home and that's almost as good as being in church right? In the Old Testament, priests, who were the only ones permitted to offer sacrifices on the altar to God and to enter the inner sanctuary where the Ark of the Covenant was kept, were required to be Hebrew, male, no less than 25 years of age-and without "blemish," i.e., without disability (see Num. 21:17-23). Any kind of disability was thought to violate the purity of sacred space and to be mortally offensive to God. Hopefully few of us today believe that the presence of disability, even in the sacred spaces of our churches and synagogues, is offensive to God. In the New Testament, Jesus tells the parable of the banquet table to which those who are blind, mobility impaired, and poor are specifically invited to come (see Luke 14:16-24). He even admonishes his followers for hindering children, who in those times had a social status equivalent to that of slaves, from approaching him (see Matt. 19:13-14). Many of us believe that God wants all of us—no matter our age, gender, race, ethnic origin, or physical and mental condition—to be able to approach his altar with our gifts of worship, praise, and thanksgiving and that, if God is offended by anything, it is by human-made barriers and rigid, outmoded attitudes that would hinder any of us from attaining the more sacred spaces (video cameras notwithstanding) as though we bore some invisible, or not so invisible, stigma. Chancel access is not primarily, or even secondarily, a matter of visibility. Rather, it—like access to the sanctuary and to the church in general—is a matter of theological imperative and symbolism. Disability access in every area of the church vividly and forcefully symbolizes the Church's commitment to those (if I may be permitted to quote from the United Methodist television ads) "open hearts, open minds, open doors" that enable all of God's children to fully participate in the mission and ministry of the Church. On this basis alone there is no good reason why access should arbitrarily stop at the chancel steps simply because it is thought too expensive, inconvenient or, heaven forbid, church-changing for it to continue. Although the issue of chancel access is, or so we are told, "off the table for further action," the Board of Trustees "will keep an open mind for the future." Well, that's good, because the future is now, and since ramps and lifts seem to be unacceptable, we have some other neat people-moving ideas: How about a crane or a cherry-picker? An escalator? Ropes and pulleys (cheap and simple)? Balloons? You see, we can come up with a lot of stuff while sitting ... and waiting ... on the sanctuary floor. 2004 MOST ACCESSIBLE CONGREGATION AWARD The California-Pacific Conference Council On Disability Ministries is seeking applicants for the 2004 "Most Accessible Congregation" Award. The award will be presented at the 2004 Annual Conference and will include a $1000 gift to the winner. All congregations following a call to become more accessible and welcoming to persons with disabilities are urged to apply for this award. For further information about the award, or to help your congregation learn more about sharing the good news with those who are "differently-abled," contact the Conference Disability Ministries Coordinators, Rev. Jerry and Juda Carter, at (949) 855-8297 or e-mail judaathome@aol.com. To apply for the award, churches will complete an application and submit it by fax, e-mail, or mail no later than March 15, 2004, to Jheri Resnik, P.O. Box 6006, Pasadena CA 91102-6006, (800) 244-8622, or jresnik@cal-pac.org. Bruce Baraw—Conference Council On Disability Ministries CLERGY FAMILY BATTLES ALZHEIMER'S TOGETHER By Tom McNally Like a computer virus, Alzheimer's disease has invaded the home of a California clergy couple, Al and Sharon Rhodes-Wickett, and turned their lives upside-down. The comparison to a computer virus ends, however, with the realization that this disease that slowly steals memory cannot be stopped. The ordeal for the United Methodist family began when Al was in his late '40s. He had trouble completing tasks and became unusually forgetful. One day, he forgot to pick up his young son, Ben, from school. When Sharon was asked to serve as superintendent of the Long Beach District in 1990, Al took leave from active ministry to be home with Ben, [then 4], and daughter Rachel, [then 8]. Sharon served as a district superintendent for four years and is [now] senior pastor of Westwood United Methodist Church in Los Angeles. Al's condition worsened. After months of observation and tests, the diagnosis finally came: Alzheimer's. Like many people, Sharon had thought of Alzheimer's as a disease that strikes the elderly. All of us know of Ronald Reagan and have seen the blank stares of frail individuals who populate nursing homes. Here Sharon and Al were in the prime of their ministry with two young children. "I had that sinking feeling that so many people have when a disaster or a train wreck happens," Sharon recalls. "I just felt swallowed up ... my gosh, now what?" However, she wasn't surprised by the final diagnosis, since Al's father had also suffered from the disease. "This is it, I thought, this is what we are going to have to live with." Al was an effective pastor and a gifted musician who used his brain a lot, according to Sharon. "He bought a computer long before they were commonplace and began writing programs that were more suited to what he wanted to do. Right now he can barely figure out how to go online or switch the printer from color to black ink. It just breaks my heart because he's really a smart person." The husband and father they once knew is disappearing. Sharon sees the disease as death by a "thousand subtractions." In an interview with UMTV, Al describes the joy of being a pastor and the pain of going on disability leave. "That was kind of tough because I knew something was wrong, but then all of a sudden, bam, I'm out." He describes the disease as "microscopic little persons that like to eat the memory [and] consider the newest memories to be the tastiest of all." In addition to medication, he said he has fought the onslaught of the "little persons" with three W's: walking, writing, and wishing. As a pastor of a 600-member congregation, a wife and mother, Sharon finds herself in the dual role of caregiver and care receiver. She is trained to care for others, a role she loves. But she admits that receiving care, such as a weekly dinner for the family prepared by women in the church, is difficult. "I feel like, well, I'm capable. I shouldn't have to take help. I shouldn't have to receive this." "I really can't imagine going through this without being grounded in God's presence," she says. "I know that God gives us the strength and capacity to take the next step. I know that my future is different than I thought it was going to be, but whatever it is, God's in it." For her, being part of a faith community is critically important. "So many people tell me they pray for us all the time, and I know they do. It is very sustaining to know there's that kind of support." United Methodist News Service Abridged from a reprint entitled "Battle With Alzheimer's Draws Clergy Family Together" in Circuit West, publication of the California-Pacific Conference of the United Methodist Church (Sept. 25, 2003). Tom McNally is a former director of the United Methodist News Service. RESOURCES FOR THE DEALING WITH ALZHEIMER'S Books (recommended by Rev. Sharon Rhodes-Wickett): Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer's by Diane Friel McGowin (1994: Dell Publishing) Speaking our Minds: Personal Reflections from Individuals with Alzheimer's by Lisa Snider, LCSW (1999: WH Freeman Co.) Alzheimer's Early Stages, First Steps in Caring and Treatment by Daniel Kuhn (MSW Publishers Press: Salt Lake City) Courage to Care: A Caregiver's Guide Through Each Stage of Alzheimer's by JoAnne Parrent (2001: Alpha Books) The Forgetting, Alzheimer's: Portrait of an Epidemic by David Shenk (2001: Doubleday) Alzheimer's Website: http://www.alz.org IN WEAKNESS, STRENGTH By Carolyn Caldwell Paul wrote, "For Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong." (2 Corinthians 12:10 niv) In the Bible study I attend, we discussed why God used such unlikely people. An ineloquent Moses delivered the law, a prostitute helped clear the way to the Promised Land. Someone in our group said it is because we are humble for when we are weak, and when we are humble, God can work through us unhampered. Had Moses been an eloquent speaker, he might not have let God speak through him. I know of a preacher who has a speech impediment—one so severe that it can be difficult to understand him. But he is an inspiration to his congregation, and God speaks through his message. The One who created us knows how to use us, weaknesses and all. Sometimes we are used because of our weaknesses and wounds; other times we are used in spite of them. Our part is obedience to God's call. Then, no matter how weak, imperfect, and unimportant we think we are, God can and will use us. From The Upper Room (Nov./Dec. 2001) UM CHURCH FOR THE DEAF MADE SHALOM ZONE In January of 2000, Christ United Methodist Church of the Deaf [in Baltimore, Maryland] was designated a Shalom Zone.* The Deaf Shalom Zone provides a multiplicity of services to meet the needs of this population, all of which is coordinated by Carol Stevens, a General Board of Global Ministries missionary. "We see ourselves as a nontraditional agency of deaf and hearing people serving together, endeavoring to meet the needs of the deaf community," says Ms. Stevens. "Almost all of the work of the zone is done by spirit-filled volunteers who use their gifts to help others." One area of service is in case management. Some people who have been helped here are: A young man dying of AIDS who had a huge trash bag of letters containing words like "court" and "jail" was able to reclaim his stolen identity before he died. A Latino mother and her deaf child with multiple disabilities were provided with a volunteer Spanish interpreter to shepherd her through medical systems and to get proper schooling for her son. A deaf man who did not know that he had a primary doctor or insurance because he lacked an interpreter and advocacy received his first check fourteen months after his cancer surgery. A deaf man, addicted to heroin for thirty-four years since the age of eleven, is now drug-free, working and living in his own apartment and serving deaf-blind people as a volunteer. A second area of service is in development of new programs to help fill in some of the many gaps in services for deaf people that hearing people can readily access. Examples are: parenting classes for deaf parents at risk of losing custody of their children taught by deaf role models and a special-designed curriculum to help deaf parents learn the skills needed to become better parents; drug abuse programs; transportation, interpreters and mail readers to help deaf-blind people live more independent lives; and support for those who need hospice service. A final area of service is in advocacy and empowerment activities. Through the advocacy and support of the Deaf Shalom Zone, a new Office of Deaf and Hard of Hearing has been established locally, judicial rules for court interpreters have been changed, and deaf people have input in the agencies that serve them. Christ United Methodist Church of the Deaf is an all-deaf church with a Sunday attendance of approximately 125. The worship service is done in the American Sign Language, with music performed by a deaf choir. The scripture lesson is dramatized so that the Word "becomes flesh." Established 107 years ago by the Rev. Daniel Moylan who was deaf, the church has long been the center of help and service for the 24,000 signing deaf people in the Baltimore metropolitan area. The current pastor, the Rev. Peggy A. Johnson, is a consultant for the General Board of Global Ministries working with the National Committee on Ministries with Deaf, Late-Deafened, Hard of Hearing, and Deaf-Blind People. *A Shalom Zone is a geographic area within a community in which United Methodist churches work toward change by collaborating with community organizations and residents to develop economic prosperity, coordinate resources, empower community leaders and residents, and proclaim the gospel of Jesus Christ. Adapted from DISC, the Disability Concerns website of the United Methodist General Board of Global Ministries, Health and Welfare Ministries (http://gbgm-umc.org/health/). KEEPING FAITH By Dallas (Dee) A. Brauninger I breathed a sigh of relief [in September of 1996] when my doctor, with great insight, diagnosed my type II diabetes. Finally, I knew the origin of my recent bouts of cloudy thinking, of depression. But the relief soon disappeared as the diagnosis sank in. I felt overwhelmed. At 54, I had been through the grief of chronic conditions twice before. Each time I returned to enjoying life. Could I do it again? My premature birth brought troublesome eyesight, and in junior high school I became legally blind. In my late twenties, my rheumatoid arthritis worsened. I eventually needed a mobility cane, and then a guide dog, to get around. During those years, however, I continued to lead a meaningful life. I completed college and seminary, where I met my husband, Bob. We married and became ordained ministers. As my sight and arthritis worsened in stages, I would grieve my losses each time but always bounce back. Bob supported me throughout. When jaw deterioration ended my preaching, I trained as a hospital chaplain. As advancing arthritis stopped that, my rehabilitation counselor located a computer with screen-reading capability that read my words back to me, and I refocused my ministerial career as a writer. And then, diabetes. Each condition follows the same general pattern. First, I feel vulnerable and angry. Questions pour out of my head. I am too furious, frustrated, and put out to do anything productive until I find answers. Then I take charge. With some comprehension of the problems I'm facing, I retrieve my courage. Two weeks after learning of my diabetes, I began researching it .... From September through April, I read. I saturated myself with facts. I was virtually paralyzed with emotions but knew I had gotten through this before. I kept trusting. As with other illnesses, I relied on my journal to express my feelings. September 20: Who is this person you have become? Is she blind, arthritic, and now a diabetic without being a person? Is nothing left of me to be myself? Gradually, my sense of hope returned. I began to digest the information. February 12: Do I still belong to myself? Yes. Am I only an aggregate of immune deficient cells? No. This bundle of protoplasm has a name. Do you hear that, blindness, rheumatoid arthritis, and diabetes? I have a name. Diabetes is especially hard to cope with: It is so unpredictable. I try to balance what I can manage about the disease with what I must accept as its natural progression. Each morning I wake up and check out which body parts work that day and plan my day. I alternate working and resting. I began to see that, working with my health care team, I could take charge of my body and manage my disease. The roller coaster of blood glucose readings stabilized. The previously baffling depressions that came and went now subsided, helping me regain my true self. I allow myself to give up at night when my head hits the pillow. I know that when I wake up in the morning I will start afresh. I also allow myself fretting time. I decide how many minutes I will worry, do so wholeheartedly, then put it aside .... Throughout these life changes, a given, spontaneous joy has nudged me to regain balance. I find now I must actively invite that joy into my life. In addition to helping my arthritis and glucose levels, that is what my daily walk at dawn with my leader dog, Treasure, is about. The singing birds—boisterous cardinals and robins—help jump-start my day. May 4: Dear gentle body, you do the best you can. All these years, you have sprung back to health at every chance. Your resilience has matched the tenacity of my spirit. Something within you gives my soul the power to quiet the frustration, to keep on figuring, adjusting, and letting its joy burst forth. Adapted from Diabetes Forecast (Nov. 1999). Brauninger is a United Church of Christ minister and writer living in Friend, Neb. She is the author of Talking With Your Child About Change (United Church Press) and HEARTalk: A Communication Catalyst for those living with a chronic condition, disease, or disability. INSIDE Look beyond my face and skin, My wrinkles and my hair. Look beyond my clothes, my limp, My walker, or wheelchair. Look beyond my body; I'm in there. Anne Mason Eiler Gall From Visions And Verses Along the Spirit's Highway (ACCAHMACK PRESS: Anaheim, Calif.). Gall is a member of the Garden Grove (Calif.) United Methodist Church. WHEELCHAIR LIFT INSTALLED AT PACIFIC BEACH UMC Pacific Beach United Methodist Church, San Diego, Calif., recently celebrated the installation of a portable wheelchair lift that will enable persons with mobility impairments to access the chancel. The Pacific Beach church, pastored by the Rev. April Herron-Sweet, funded the wheelchair lift with its own reserve funds and with a grant from the Grant and Scholarship Committee of the San Diego District Union of the United Methodist Church. SPECIAL ACCOMMODATIONS AT ANNUAL CONFERENCE? The California-Pacific Conference Council On Disability Ministries is asking local churches to inform the Sessions Committee if any representatives with disabilities at the Annual Conference this June will require special accommodations. If "yes," please do not wait until the registration packets are sent out. Contact Rev. John Valles, Sessions Committee, at 909-625-1844 ASAP. I AM DISABLED AND... You are my lamp, O LORD; you turn my darkness into light. With your help I can advance against an army, I can scale a wall. It is you, LORD, who arms me with strength and opens a way for me. You make my feet like the feet of a deer and enable me to stand on the heights without fear. Affirmation #7 based on 2 Samuel 22: 29-30, 33-34 by Ken Tittle and Mariposa Ministry and Mariposa Online. 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 Fred Fahnestock Betty Salzmann Burt Colby Joe Rollins Virginia Clark Nell Hong Gaile Johnson Rev. Ed Hoffman Char Tarr Lila Lanham Rev. V. Lu Wilson 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 to those able to open attached files in MSPublisher2000 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