WINGS A FAITHLETTER FOR, BY AND ABOUT UNITED METHODISTS WITH DISABILITIES AND THOSE WHO CARE ABOUT THEM Fall 2002—Vol. 13, Issue 2, No. 50 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: THE COW IN THE ATTIC AND OTHER WONDERS OF MODERN TECHNOLOGY By Jo D'Archangelis Whenever I hear people wax nostalgic about "the good old days," I can only assume two things. One is that they have very selective memories. No old days were really as good as the ones they remember; in fact, there was probably at least a couple of things about them that weren't so great. And two, people who rhapsodize about times past did not experience disability on a first-person basis then. Being disabled in the not-so-good old days was rough. Not that being disabled now is a bowl of avocado dip. But there's so much more that we have access to these days to keep us healthier, more productive, better educated, and more connected to the world around us. Take the computer, for example. Without the computer I wouldn't be able to put out this newsletter, I wouldn't even be able to write what I'm writing now. No, that's not strictly true—without the computer and accessibility software (which now comes as standard equipment with both Windows and Macintosh) and voice-activation software, I wouldn't be able to do what I'm doing now. A couple of years ago it became apparent to me that I couldn't continue to put out the newsletter unless I got some help with all the text that had to be entered (not to mention e-mail correspondence). A voice-dictation system seemed to be the answer, and I made sure the software was included in the new computer system the San Diego District Office of the United Methodist Church so generously funded for me over a year and a half ago. Did the voice-dictation system turn out to be the blessing I hoped it would? Yes. Did the voice-dictation system turn out to be the most frustrating, exasperating thing I've ever had to deal with on my computer since Windows—or AOL? Yes. In the first place, you just don't start dictating to Dicky Dragon (as I affectionately refer to the Dragon Dictate system); you have to be trained to it. A very professional young man came to my home and for a hefty fee (plus mileage) per session showed me how to use Dicky. If I do it right, whatever I dictate into the headset microphone shows up word for word, semi-colon for semi-colon, on the screen. I can also issue most computer commands verbally without "clicking" on anything and have them instantly carried out, making me feel like a computer Napoleon. I did so well in the first training session—Dicky Dragon "recognized" about 80 percent of the words I said—I didn't need a follow-up session and the professional young man went away somewhat disappointed at the prospect of no further fees. Since then, Dicky Dragon's recognition rate has fallen to between 30 and 50 percent. Dictating to Dicky is a lot like communicating with your half-deaf great-uncle Ralph who refuses to wear a hearing aid. What comes back at you may bear a slight similarity sound-wise, but it makes no sense whatsoever: "Hey, Uncle Ralph, how is your sciatica today?" "What's that—there's a cow in the attic taking x-rays?" I have to admit that Dicky Dragon's hard-of-hearingness is not all his fault. You have to clearly articulate each word like a Shakespearean-trained actor for Dicky to be able to recognize it. Because atrophy affects the tongue as well as any other motor muscle, I tend to slur my words. Oh, I suppose I could articulate better if I really made the effort, but when I'm on a verbal roll, I don't want to disrupt all that creativity going on by pausing before each word and mak...ing...ve...ry sure that my b's don't sound like v's and vice versa (or "bice bersa" as Dicky is liable to regurgitate back at me). Which is another thing—if you're not used to it, it's really hard to dictate your thoughts aloud. Before, I could compose what I wanted to say (express) in my head and almost at the same time type it in. Now, I have to think about what I want to say and then I have to think about saying what I want to say and then I have to say it (and then I have to "correct" what I say because Dicky Dragon usually does not get it the first time around). When once there was a clear connect between my brain and my hand, now it seems there is a major disconnect between my brain and my mouth (no comments, please). Nonetheless, I am now dependent on Dicky Dragon and am absolutely desolate when it crashes (which it is wont to do from time to time). Indeed, there are a lot of things available to people with various types of disabilities in these first few years of the 21st century which were not available to us in the "good old days" and which, while highly imperfect, enable us to do things we could not do, or only do with punishing effort, without them. I for one am very grateful to God to be living in these Bad New Days. I AM DISABLED AND... I know that all things work together for good for those who love God, who are called according to his purpose. That includes my disability and everything I have experienced because of it. Affirmation #2 adapted from Romans 8:28 (NRSV) by Ken Tittle and Mariposa Ministry and Mariposa Online. BOOK REVIEW: BOOK OF ESSAYS ON END-OF-LIFE ISSUES INFORMATIVE AND THOUGHT-PROVOKING Who's Right? Whose Right? Seeking Answers and Dignity in the Debate Over the Right to Die, edited by Robert C. Horn III, with Gretchen Keeler; (Sanford, FL: DC Press, 2001, 438 pp., $24.95, www.focusonethics.com. In his 1997 autobiography, How Will They Know If I'm Dead?*, Robert C. Horn III tackled a somber and difficult subject—his life with the debilitating and ultimately terminal neuromuscular condition ALS (or "Lou Gehrig's Disease"). Now he tackles yet another somber and difficult subject, the right to die and other end-of-life issues, in his book, Who's Right? Whose Right? Seeking Answers and Dignity in the Debate Over the Right to Die, this time mainly as editor rather than writer. Over a three-year period Horn solicited 10 personal stories from people with chronic illness or permanent disability and 21 "expert" articles from doctors, lawyers, religious leaders, hospice workers, psychologists, and right-to-die and right-to-life advocates. He then, with the help of his assistant, Gretchen Keeler, collected these stories and articles in an impressively comprehensive volume of essays on almost every aspect of the issues involved, including euthanasia, physician-assisted suicide, the Oregon Law (which legalizes physician-assisted suicide in the state of Oregon), hospice care, refusal of life support and other medical treatment, and the role of depression. With a Foreword by Dr. C. Everett Koop, former U. S. Surgeon-General, Who's Right, Whose Right? presents a wide range of religious and political opinion (although I personally missed something from Not Dead Yet, an organization opposed to euthanasia and physician-assisted suicide in regard to persons with disabilities). The essays vary in quality but most of them are informative and thought-provoking, if occasionally disturbing. Appendices list additional reading and other resources for information. The most emotionally compelling pieces are written by people wrestling with end-of-life issues on a personal level—people dealing with progressive incapacity and loss of human dignity; people suffering from unrelieved pain; people sitting at the bedside of a terminally ill relative or friend. In one essay, Horn speaks frankly of his own situation—unable to talk or to move or to breathe on his own and having to be fed through a feeding tube—a situation others might find unbearable. Supported by his family and church (the Northridge [Calif.] United Methodist Church) and with access to medical and attendant care and assistive technology, Horn himself has no desire to end his life. Yet he feels that the choice of physician-assisted suicide should be legally available. Some of the essays could have benefited from being pruned of repetitious or extraneous passages. Distracting too are the multitude of typos; errors in grammar, punctuation, and syntax; mis-attributed quotations; and inconsistent, if not strange, formatting. The essays are grouped into 11 numbered but untitled sections, and it is not clear (at least it is not clear to me) why they are grouped as they are. Despite these flaws, Who's Right? Whose Right? is an enlightening compilation of essays on an important subject. If Horn in his earlier book sought to answer for himself the universal question, "How shall I live?" he here offers a variety of answers to a question many of us in this era of technologically-extended life may sooner or later have to ask ourselves or ask on behalf of some loved one, "How shall I die?" J. D. *Reviewed in Wings (Spring 1997). AFTERWORD: THE UNITED METHODIST CHURCH POSITION ON END-OF-LIFE ISSUES In the "Publisher's Comment" at the beginning of Who's Right? Whose Right? several different faith communities and their "official" positions on end-of-life issues are listed. Oddly enough, given the religious affiliation of editor Robert C. Horn III, no mention is made of the United Methodist Church. Here then is a summary of the official position of the United Methodist Church in regard to some end-of-life issues: The Church holds that dying persons and their families have the right to refuse life-sustaining treatment if it causes undue burden or if it only extends the dying process. All end-of-life decisions should be made by dying persons prayerfully and thoughtfully and in consultation with their families, pastors, and doctors, among others. Dying persons should have access to all the physical and spiritual care necessary to maintain dignity and comfort during the dying process, including pain relief. Although the Church does not see suicide as an appropriate way to end life, it does not believe that suicide separates anyone from the love of God, and it deplores the condemnation directed at those who commit suicide and the stigma placed on those left behind. The Church calls for all persons to have access to pastoral and medical care and therapy to alleviate the conditions leading to suicidal despair. The Church does not endorse physician-assisted suicide. Based on the Social Principles of the United Methodist Church, ¶65, §(L) & §(M). REFLECTIONS OF A RETREAT LEADER: A TOUCHING OF THE SPIRIT By Rev. Tom Reinhart-Marean One major risk when you're leading a retreat with the theme of vulnerability is the need to reveal yourself in order to help others reach deeply into themselves. Add to that the element of physical touch through therapeutic massage, and you run the further risk of having your own experiences combining faith, self-revelation, visualization, prayer, and chiropractic massage perceived by others as weird or strange. I felt scared and calm, nervous and anxious, uncertain and confident, and...well...vulnerable as I set about the task of being the resource person for the 2002 Earl Miller Spiritual Life Retreat For Persons With Orthopedic and Visual Impairments held last summer at Camp Cedar Glen. For the past three years I had lived with and through the very things I wanted to share with the campers, so I knew first-hand that the material was appropriate for the setting. I also knew that asking my chiropractor and some of her massage therapy students to be "hands-on" resources for the retreat was probably the best thing I could have done for the benefit of all the retreat participants. Nevertheless, I wasn't so sure others would find my sharing to be as helpful or meaningful as I wanted it to be, and I started the retreat physically exhausted from lack of sleep and emotionally drained from worry. All I really needed to do was trust that the Holy Spirit would be at work in the retreat and in the lives of all the campers! Even though I prepared and passed out lists of scriptures to help us focus on our vulnerability and weakness, the real insights came through the interaction and sharing of the participants. Even though I happened to be the one verbally leading the guided meditations, God was the One guiding the campers to deeper truths and insights applicable to each individual. The writings and drawings of the campers on Saturday evening overwhelmed me with their beauty and power. Elements of the retreat flowed into each other in ways none of us could have anticipated. Some might call it coincidence that the craft, the decorating of candles, would provide us with our focal point and theme for the closing worship. Some might be tempted to call it luck that the youth group assisting us included marvelous musical talent that lifted all our hearts in worship of God. However, none can deny that it was the working of the Holy Spirit that led one camper to rededicate her life to Christ as we began our closing celebration of Holy Communion, even as I trust it was that same Spirit who brought together the disparate elements of talent and experience to form the holy wholeness of the entire retreat. Yes, we talked about our vulnerability during this retreat, including how vulnerable we become when we give permission to another to touch our bodies. That physical touching, however, led to more profound touching of the soul and hearts where many discovered a measure of healing previously unknown, healing that only the grace and love of God can provide. For that, and for the high privilege of sharing the entire retreat experience, I give God thanks. NOTE: I also extend thanks to Dr. Ken Tittle and Mariposa Ministry for the scripture-based meditations; to Dee Baraw for providing a craft activity and bringing her church youth group to help; to Dr. Donald Deer for his biblical research on the theme of weakness; to Jo D'Archangelis for her writing on the implications of vulnerability; and to Dr. Bonnie Berger and the Mesa Institute students who shared their time and the gift of their healing hands. THE WOUNDED HEALER By Philip Yancey The French have a saying: "To suffer passes; to have suffered never passes." Too often we think about a ministry of help as a one-way street in which I, the healthy person, reach out in compassion to assist the wounded. But people who have suffered are the very best equipped to help, and a person crosses the final barrier of helplessness when he or she learns to use the experience of suffering itself as a means of reaching out to others... A wise sufferer will look not inward, but outward. There is no more effective healer than a wounded healer, and in the process the wounded healer's own scars may fade away. From Where Is God When It Hurts? WALLS By Roberta Porter Once my life seemed a prison— walls I thought I needed to hold me up held me in. Afraid to risk, fearful of change, my cell was small, confining, safe. One day you stood at the door, Lord, and called my name. You asked to come in, gently leading me to risk, to follow, to change. Surrounded by your love and filled with your grace, I found myself free— to love with the Spirit's love, to grow in becoming who you want me to be, to praise you always for removing the walls, and for the revelation of your risky, grace-filled freedom. From Alive Now [Nov./Dec. 1998]. GRANTS AVAILABLE TO CHURCHES TO BUILD ACCESSIBILITY RAMPS Funds are now available in the California-Pacific Conference of the United Methodist Church to help local churches construct exterior accessibility ramps. "Every year the Conference Council of Finance and Administration designates a small amount of apportionment dollars to the Conference Congregational Loan Committee for facility improvements," said Kris Hodson, Administrative Officer of the Congregational Loan Committee (CLC). "This year $75,000 has been set aside for building ramps. Grants up to 50 percent of the cost of constructing a ramp, for a maximum of $5000, have been identified per church." Hodson noted that by making the grants available the CLC was at the same time trying to ascertain the level of need for local churches throughout the Conference to make sanctuaries and other areas of their facilities accessible. "We felt we could modestly begin with exterior ramps," she said, "But as data is gathered, we hope to eventually be able to provide assistance with interior ramps, lifts, and perhaps even elevators." The grants are known as "conditional donations." The Book of Discipline requires that while legal ownership of the property acquired or constructed with conditional donation grants resides with the church or congregation, the property must be held in trust for the Conference. "The CLC prides itself on being helpful to churches on an as-needed basis," Hodson said. "I have available in my office a one-page information sheet addressing how churches might apply for conditional donation grants." The accessibility ramp grants are administered in each district by the Committee on Church Building and Location—except in Riverside, Santa Ana, and Pasadena Districts where the grants are administered by the Committee on Congregational Development. For more information on applying for an accessibility ramp grant, contact Kris Hodson at the Conference (telephone: 626-568-7363, or in Southern California only 800-244-8622; e-mail: khodson@cal-pac.org) or the chairperson of the District Committee on Congregational Development or District Committee on Church Building and Location (see below). COMMITTEE ON CHURCH BUILDING AND LOCATION Hawaii District: Rev. Gordon Marchant c/o Christ UMC, Honolulu 808-536-7244 Long Beach District: George Zettler 310-378-4598 Los Angeles District: Robert Terrell 310-446-0182 San Diego District: Craig Woempner 619-231-0203 Santa Ana District: Greg Hammill 714-637-2877 COMMITTEE ON CONGREGATIONAL DEVELOPMENT Santa Barbara District: Edgar Law 818-360-1563 Pasadena District: Don Stratton 626-919-5091 Riverside District: David McGlocklin 909-678-1565 "Normal" is a useful word in medicine and psychology, but otherwise it's too abstract. When we decide what's "normal" and what's "not normal," it could be very dangerous. Alexandre Jollien From his book Praise of Weakness; disabled with cerebral palsy, Jollien was in a Swiss institution for most of his 25 years. 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 Lucille Fleming Ruth Sciumbato John Henker Nellie Hong Rev. Ed Hoffman I. Alan Sparks Char Tarr 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