WINGS A FAITHLETTER FOR, BY AND ABOUT UNITED METHODISTS WITH DISABILITIES AND THOSE WHO CARE ABOUT THEM Spring 2000—Vol. 10, Issue 4, No. 40 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: "THIS IS GOD CALLING––WAKE UP!" By Jo D’Archangelis When Larry Kegan was 16, he was partially paralyzed in an automobile accident. He drank heavily, turned away from his religious heritage of Judaism, and tried to commit suicide. In a second automobile accident some years later, he became completely paralyzed. Says Kegan in a magazine article: "I believe God looked and saw this guy with some potential who was on his way to killing himself, and He had to cut my wings a little. So He did. My disability made me more aware, more compassionate and more sensitive than I ever would have been. I think even a severe disability, as hard as it is, can be a blessing in disguise." * Hel-lo? Disability a blessing? Aren’t "blessings" supposed to be good things that God provides for us, things in which our true happiness lies––like family, friendship, good health, satellite TV? Maybe I’m weird, but my disability just doesn’t seem to be all that good. My disability is...how shall I put it?... dis-abling. Because of severe muscle weakness, I am unable to do many of those things that the average schlub takes for granted, like putting on socks. Or if I am able to do something most people easily and naturally do (like breathing perhaps?), it’s usually with a lot of effort. It may be that my disability is really a blessing in disguise, but so far I haven’t been able to strip away the crummy camouflage to the essential good lurking within. Even more difficult for me to believe is that God intended or willed my disability. I suppose it is possible that God could will something unpleasant for a person in order to shape him or her up, in the same way that a parent disciplines a child. But for God to will someone to be totally and permanently paralyzed so that he could become a more caring, sensitive person? Does God really inflict this kind of suffering on human beings even for our own good? To me this makes God sound manipulative and coercive, if not downright cruel. Imagine God talking to some of his angelic host just prior to my conception: "Say," he says, "I think I’ll take this recessive gene from Jo’s mother and that recessive gene from Jo’s father and plunk them in her chromosomes so that she’ll be born with a spinal muscular atrophy and that way she’ll be gradually incapacitated and wind up in a wheelchair while she’s still a child. "But I’m not a capricious deity, you know; I have my reasons. Her disability will make her a lovely person, she’ll be an inspiration to others, and she’ll use the gifts I’ve also given her to try and enlighten the church about disability. Unless, of course, she turns out just the opposite. Unfortunately, free will is standard equipment for human beings." No, this draconian God is not the God I see revealed in Jesus Christ. I don’t doubt that some of us need wake-up calls to get us back on track to responsible lives and that a disability can sometimes serve as that wake-up call. I don’t doubt that God has called us to be "wounded healers" ministering to those who are likewise wounded, providing encouragement and hope, and educating, informing and reforming where we can. I don’t doubt that I in my disabled self-ness am to bring glory to God. (I also don’t doubt that I often fall way short of these lofty goals.) What I do doubt is that God inflicted my disability upon me in order to bring these good things about. In fact, I doubt that God deliberately inflicted my disability upon me at all. (At this point, I could go into a half-baked, pseudo-theological discourse on why bad things happen to good people or good things happen to rotten people or good and bad things happen to good and bad people indiscriminately, but space is, mercifully, limited.) I do believe though that God through his transforming grace and power can and does bring love out of hate, liberation out of bondage, life out of death, and plenitude out of loss and lack. I may not be able to look upon my disability as a blessing in itself, but I am able to look upon the life I live with it as filled with blessing upon blessing, grace upon grace. *From "Larry Kegan: Cool Enough To Be Who He Is," by Barry Corbet [New Mobility, April 1999]. "WE ARE SOMEBODY SPECIAL" THEME OF MAY DISABILITY RETREAT This year’s Earl Miller Spiritual Life Retreat will be held from Friday, May 19, to Sunday, May 21, 2000, at Camp Cedar Glen near Julian, Calif. Sponsored by the California-Pacific Conference of the United Methodist Church, the retreat is for adults with orthopedic and/or visual disabilities. The retreat leader will be the Reverend Wilbur Johnson, retired United Methodist minister and post-polio survivor, speaking on the theme of "We Are Somebody Special." Bill and Gigi Tell will be providing the music. Registration fee/person is $75. For more information and/or registration form, contact: Norm and Helen Stockwell, retreat registrars, telephone: 310-374-1535, e-mail: N6ns@flash.net. Tom Simmons, retreat dean, telephone: 909-351-8544, e-mail: tommyboy_92503@yahoo.com. GOD’S AWESOME CREATURES, OR THE BEST PHYSICAL THERAPISTS I’VE EVER HAD By Rita Roberson My name is Rita, and I have cerebral palsy. I want to share with you how awesome God really is. When I was a child, I rode our family horses until I grew too heavy for my dad to easily lift me up onto their backs. But I always had the dream of being able to ride again. Approximately twenty years ago, I read an article about equestrian therapy, i.e., about people with disabilities benefiting from riding horses. Although I didn’t really believe all the "miraculous stuff" that the article claimed (I guess I forgot who made horses), it gave me hope that my dream might someday become reality. Unfortunately, the equestrian therapy being written about took place in California, and I lived in Boise, Idaho, at the time. A few years later, God’s plan brought me to San Diego. I tried a couple of equestrian therapy programs in the San Diego area before I found one that worked for me. I didn’t start riding with this program for the therapeutic benefits though; I just wanted to fulfill a physical education requirement at San Diego State University with a beginning riding course, and I needed some practice before the class started. But I soon found that God, in all his wisdom, had made horses the best physical therapists I have ever had. A few months of riding and I was able to lift my legs into the car without help. And a short time later, I had one of the most amazing experiences of my life! My legs had never been able to support my full weight, so I had always needed a moderate amount of assistance to transfer out of my wheelchair into the car, and visa versa. Then as I was being helped into the car one day after a riding lesson, I suddenly realized that I was standing without struggling. My legs were supporting all of my weight! I began to believe the stories in the magazine. Since then, I have learned, among other things, to push myself back in my wheelchair and pull up to a standing position while hanging on to something. I praise God for horses every time I think of the years that I could not do any of these things! Now my dream is to be able to reach my full physical potential by finding a way to ride every day instead of just once a week. During my years with the equestrian therapy program, I have seen children with cerebral palsy learn to hold their heads up and even sit up by themselves as they continue to ride on a regular basis. Some students have experienced so much improvement physically, emotionally, and/or psychologically, they have become valuable additions to the program’s volunteer force. The magazine articles were correct. Equestrian therapy––through God’s awesome horses––does work "miracles." The improvement is not always major; it depends on the type of disability, personal health, and frequency of participation in the riding. But I am convinced that, barring health restrictions, this type of therapy is worth a try for both adults and children with disabilities. I especially recommend equestrian therapy for children with cerebral palsy and autism. Editor’s Note: Roberson earned a B.A. degree at San Diego State University and now serves as assistant to the teacher of an SDSU General Education course called "Disability and Society." The course uses class interaction with Roberson, guest speakers, videos, volunteer experience, and lectures on the ADA (Americans With Disabilities Act) to give students, as Roberson puts it, "the understanding they need to feel comfortable working, playing and even worshipping with people who are different." Roberson is also secretary of the Adaptive equestrian Riding Therapy (AeRT) program in San Diego. For more information on equestrian therapy, contact NARHA (North American Riding for the Handicapped Association). Check out their website at www.narha.org or write to them at P.O. Box 33150, Denver, CO 80233. The NARHA telephone number is 1-800-369-RIDE (7433). WHEELCHAIR It can be a coffin Moving mournfully Through a life-long wake. Or a cradle To tip-toe by For the infant's sake. Or a craft, And in it Any journey make. Murielle Minard From the Bulletin Board of the Health and Welfare Disability website, General Board of Global Ministries, United Methodist Church. THE CHURCH COMES TO HER By Bill Davis When Becky Farmer could no longer attend First [United] Methodist Church of Huntsville, [Ala.], the church came to her. "What is significant to Becky," said Mary Blundell, Becky’s mother, "is that she is a part of the group, she is a part of the church." And they, Ms. Blundell said, wanted Becky to know she is surrounded by the ones who know her and love her. Members of the church hold two meetings, one on Tuesday and one on Thursday, in Becky’s room––adorned with the awards of her son, Randall, and graduation pictures of her daughter, Rebecca Lynn, and a banner wishing her well fastened above her head. Lying in bed, a ventilator providing her with oxygen, Becky listens to the prayers and conversation of her fellow church members. Mrs. Farmer was diagnosed in 1986 with Amyotrophic Lateral Sclerosis, more commonly known as Lou Gehrig’s disease. ALS is a neuromuscular disease marked by the degeneration of motor cells in the brain and spinal cord leading to severe impairment in mobility, speech and breathing. The mind remains largely unaffected by the disease. By 1990, Becky was bedridden and could communicate only through special computer equipment. In the last two years she has lost even that ability and is now only able to answer questions by moving her eyes: If she looks at you, it means yes, away means no. The Tuesday group is an ongoing part of the Walk to Emmaus spiritual formation program. Although her disability prevented Becky from participating in the initial weekend retreat, Anne Bellis, a group member who graduated from Huntsville High School with Becky in 1966, said, "We decided that Becky would be an honorary member of our group." "[Becky] could answer the [spiritual guidance] questions ahead of time and be included in the group," said Kathie Barnett, another member. "[Ms.] Barnett is a hub," said Ms. Blundell. "When she has gone on Emmaus Walks, she has designated Becky to be a prayer angel and kept us busy at home with the schedule and prayers for the ‘pilgrims.’" The Rev. Coy Hallmark, associate pastor at First UMC, gives the group Communion on the third Tuesday of every month. "It is amazing to see a group stay so committed to one person," Mr. Hallmark said. When the disease took away Becky’s ability to communicate, the group’s focus changed. "Now we talk with Becky about make-up or fashion and keep her abreast of what is going on in the world," Ms. Bellis said. "It is awesome to us how Becky has continued to be a part of our and other people’s lives," Ms. Barnett added. The group that meets on Thursday is a small prayer group of church members. Before Becky became bedridden, she attended a fellowship group at church. Now some members of the group meet in her room. The group meetings serve as an affirmation of Becky’s active status in the church. "She was a member and stays a member," said Mary Reece of the prayer group. From Religion News Service, as published in the United Methodist Review [May 14, 1999] under the title, "Unable To Go To Church, The Church Comes To Her." MATTHEW 25 Editor’s Note: The following paraphrase of Matthew 25 appeared in the Fall, 1992, issue of Wings. As it still speaks as clearly to the issue of church accessibility in all its forms as it did then, we are re-printing it. The author, Holly Elliott, originally included the paraphrase in a petition to the 1992 General Conference of the United Methodist Church to establish the National Committee on Developing Deaf Ministries. The petition was unanimously approved. Then the Holy One shall say to the people on the right: "You who are blessed by my Maker, come and receive the birthright that has been prepared for you ever since the creation of the world: "I was deaf and you provided sign language interpreters. "I was hard of hearing and you gave me assistive listening devices. "I had a child with Downs Syndrome and you invited my whole family to serve as greeters. "I was in a wheelchair and you made a way for me to approach the Communion table. "I was schizophrenic and you welcomed my sharing in your prayer group. "I had AIDS and you visited me. "I was gay and you blessed my same-sex marriage. "I was vision-impaired and you bought an enlarging copier machine. "I was a recovering alcoholic and you entrusted me with responsibility. "I had no voice and you gave me a funded conference task force." And the Righteous will then respond: "Friend, when did we ever greet you in the sign language of the deaf? Or provide you with FM or infrared transmitters? Or affirm the significance of your mentally retarded child? Or make a way for your wheelchair to approach the Lord's Table? "Yes, and when did we share the burden of your diminished eyesight or afford you respite from the social stigmas of dreaded disease, chemical dependence or homosexuality? And when did we support your advocacy with a task force?" The Holy One will answer them: "I tell you, indeed, whenever you did this for any of these my brothers and sisters, you did it for me." Holly Elliott TO THOSE LESS FORTUNATE As I go down the aisle... Past the pews... You see my frailties I see your imperfections I do not envy you We all have our problems But we come to this place In love and faith Accepting God’s will Lift me up Pray for me As I want to lift you up Pray for you We all need God’s love We are all transformed in Christ Can I help you? Patricia Knock Knock is a member of Fallbrook United Methodist Church in Fallbrook, Calif. SIGNING IN FAITH By Cyndie Claypool de Neve Laura Rockwell, 20, who was introduced to the needs of the hearing-impaired at a special camp several years ago, is dedicating her career to bridging the gap between hearing and non-hearing churchgoers. "Deaf people are the forgotten few in the churches," said Rockwell, majoring in deaf studies at California State University Northridge. "I’m trying to help develop awareness in the Methodist church." Every Sunday while she’s home from school, Rockwell is up front at the United Methodist Church of Vista, [Calif.], interpreting the entire service—including songs, bulletin announcements and sermons—into ASL [American Sign Language], even though there are no hearing-impaired parishioners sitting in the pews. "Hopefully, the program will attract the hearing-impaired," said [Rockwell]. "The problem is that deaf people are not in the Methodist churches because there are no ministries for them. I [feel] God has called me to minister to hearing-impaired people—to give them Communion, to baptize them, to marry them." Since her congregation is planning to build a new church, she is working with the leadership to make the new building more accessible to the hearing-impaired. For instance, lights should not be behind the speaker because that creates shadows and makes it hard to read lips, she suggested. An overhead projector should be used for music, because "you can't hold a hymnal if you’re signing." Technologically, Rockwell added, it’s helpful if a church uses an Assisted-Listening Device so those with hearing aids can plug them directly into the sound system. To be able to communicate with the deaf over the phone, it’s useful to have a Teletypewriter, a telephone device that works like e-mail. Another helpful device is Real-Time Captioning, in which a person types court-reporter style into a computer. The words appear on an overhead screen. "It helps more than the deaf," Rockwell said. "Some hearing people are not necessarily paying attention all the time." But the main suggestion from [Rockwell] is that anyone speaking with an interpreter should talk slowly. This includes those reading Bible passages, giving announcements or preaching. "Sometimes it takes a while when a pastor is using humongous words," said Rockwell. "Then I get a little bit behind." Excerpted from "Signs of Faith" in the North County Times [Aug. 23, 1996: Escondido, Calif.]. Editor’s Note: Rockwell is currently a seminarian at the Boston University School of Theology and plans to devote herself to Deaf Ministry after completing her studies. VOLUNTEERS IN MISSION Adult and youth workers, disabled and non-disabled, are called to build a Habitat For Humanity house in Redlands, Calif., during the California-Pacific Annual Conference of the United Methodist Church, June 13-18, 2000. Actual construction begins June 13. For more information, contact Conference/Habitat Coordinator Toni Ethridge: Telephone/Fax 818-767-5197 E-mail Tonibear01@aol.com 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: John Henker Margery Chapman Nellie Hong Linda Ahnell Jill Halley Marie Morse Virginia Clark Rev. Edward Hoffman Timothy Fern, M.D. Barbara Stutes Christine Halley Marian Buck Alma Enyeart Larry & Alice Saunders Reuben & Agnes Enander Harriet E. Aaron 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 Wings Needs The Following From You: Ideas and suggestions for articles Original stories, poetry, cartoons Personal essays and anecdotes Appropriate items from another source The name and address of someone dying to be on our snail-mail mailing list, or e-mail address for our e-mail mailing list A change-of-address notice if you move and want to continue receiving Wings via snail-mail Send All Correspondence To: Jo D'Archangelis, Editor, Wings Editor’s Mailing Address: 592 West Ammunition Road, Apt. 1 Fallbrook, CA 92028-3191 Editor’s Telephone/Fax: [760] 723-2668 (please call before faxing) Editor’s E-Mail Address: JODARLIS@aol.com Wings Website: www.satcom.net/mariposa/find_wings.html Pssst! Wanna Be An Angel? We need your financial support to continue publication and to expand the readership of Wings nationwide. 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 Totally 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 (Donations are tax-deductible to the extent allowed by law.)