WINGS: A FAITHLETTER FOR UNITED METHODISTS WITH DISABILITIES AND THOSE WHO CARE ABOUT THEM Winter 2009 -- Vol. 19, Issue 3, No. 75 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: CLAY JARS AND THE INDWELLING SPIRIT OF GOD By Jo D'Archangelis (Editor’s Note: The following is the last in a series of four columns loosely based on a talk originally given at the First United Methodist Church in El Cajon, Calif., in July of 2001.) There is one last, very important thing I knew before but which was to be reaffirmed and reinforced by my association with Mariposa Ministry and the California-Pacific Conference disability retreats: the Spirit of God is pleased to dwell in even the most imperfect of human temples. (See 1 Cor. 6:19 and Col. 1:19) Too often we who are disabled receive the message that we are blights on God's good creation and that something has gone horribly awry in regard to us and needs to be fixed in one way or another. Some apparently otherwise well-intentioned people even suggest that we are not fully acceptable to God and his Church until or unless we have been miraculously healed. You need to be healed to be saved (or maybe it's you have to be saved to be healed—I’ve always been a bit fuzzy on the orthodoxically correct order), they exhort us. One day when I was about 9 years old, as my mother was wheeling me to the movies, a strange woman came up to us on the street, laid her hands upon my head, and prayed fervently for the devil to come out of me so that I might walk as other children. Well, she certainly scared the hell out of me, but apparently she didn't get the devil to budge because I went right on being disabled and unable to walk. Nonetheless, in spite of all the religious rhetoric thrown at me and attempted exorcisms foisted upon me over the years, I have always known deep down in my soul that I am neither demon-possessed nor God-cursed; rather, I am God-loved and God-accepted as part of his good creation just the way I am. I have known and experienced the Spirit of God working in and through this—to use Paul’s metaphor—vulnerable and transitory "clay jar" body of mine (see 2 Cor. 4:7). It may be a jar that is cracked and chipped and full of holes and even has a handle or two broken off. Yet God sees fit to dwell in it and use it to manifest his love and his glory to the world just as much as he would dwell in and use the body of any non-disabled person. Perhaps—even more so. More than seven years have passed since I first publicly expressed these thoughts, and during this time some things have changed. I no longer attend the disability retreat. In fact, I stopped attending it in 2001, after 11 straight years, simply because I didn’t have the strength and stamina needed to make it through the weekend-long event. (The retreat itself was permanently canceled, perhaps due to lack of interest, in 2006.) I have also withdrawn from Mariposa, choosing instead to focus my limited time and energies on other things. But I will always be grateful to have known so many wonderful people both at the retreats and in Mariposa (sometimes they were the same people!) who helped reveal and reaffirm to me what life as a person with a disability could be. My hope is that all disabled people, especially younger ones, are given opportunities to have this basic truth modeled for them: that one can have a disability and still be a whole person—whole sexually, whole emotionally, and whole spiritually. I’ve never been fond of the character Tiny Tim as representative of disability—too sappy and sentimental for my taste. However, it only seems fitting to end this series of discourses with the Timster’s well-known benediction: God bless us, everyone! HOW TO INVOLVE YOUTH WITH DISABILITIES IN SUNDAY SCHOOL By Kimberly Ann Willis Here are some of our best suggestions for how we have incorporated youth and children with disabilities into our Sunday school classes: Practice radical hospitality. Too often the church is ambivalent or even hostile to the presence of a child or youth with disabilities in Sunday school. Families take a risk by exposing themselves to such attitudes. Your church can commit to minimizing this risk. Don’t just tell people you are hospitable—show them! Go out of your way to include their children in your Sunday school program. Don’t wait for them to come to you; visit the families at home to extend your invitation. You will learn more from them than any book can teach you. Be observant and loving. Commit to learning and sharing. Ask the family to talk to you about the disability. Most families are willing to do so if asked. Invite them to speak to the Sunday school classes and teachers. Other children and youth may not know how to relate to a person with a disability. Model this for them. Discuss their fears or reservations. Let them be curious and answer their questions in age-appropriate ways. Regional and national advocacy groups have information you can share so that your church can help the child or youth participate more fully. Create a care group. Don’t go it alone. Celebrate and incorporate the gifts of others within the community. It really does take a village. Perhaps someone within the class can become an in-class companion for the child or youth. Don’t force this but don’t prevent it either. Be open to where the Spirit leads and whom the Spirit brings. It may not be the person you expect! Be open to receiving as well as giving. Children and youth with disabilities have their own unique, God-given gifts but are often denied the opportunity to share them. Help them offer their gifts within your faith community. Let them teach you and be willing to receive and celebrate their gifts. Empower them to try new things and create a safe and supportive space for them. Expect the unexpected. You will try things and they may or may not work. Depending on the nature of the disability, this new experience may be overwhelming to the child or youth. He or she may have trouble adapting to the Sunday school environment. If something doesn’t work, don’t give up. Pray. Regroup. Share ideas. Try again. Try something different. Be creative. Be persistent. Network. Celebrate diversity. Don’t give up! You’ll be blessed! Use resources. Here are a few that have helped us: "That All May Worship: An Interfaith Welcome to Persons With Disabilities," by Ginny Thornburgh and Ann Rose Davie (1992, National Organization on Disability). "Unexpected Guests at God’s Banquet: Welcoming People With Disabilities Into the Church," by Brett Webb-Mitchell (1994, Crossroad Publishers). Adapted from the UM Portal website (www.umportal.org), August 31, 2007. Rev. Willis is pastor of the Wesley United Methodist Church in Bakersfield, Calif. LISTENING TO THEIR NEEDS Associated Press The church is silent when the Rev. Brian Sims takes the pulpit for his Sunday sermon. He pauses to make sure all eyes are on him, then raises his hands and begins preaching. Not a word passes his lips. "We're all different," Sims relates in American Sign Language, "but it doesn't matter as long as we open our hearts." Two deaf women lead the first hymn, which is played on tape for the handful of visitors who can hear. Sims, who also can hear, bangs a bass drum to mark the beat for the others. The congregation signs the words, fingertips touching palms for "Jesus." When the music and signing end, a hundred hands wave in silent applause. While some churches provide signers to help deaf and hearing-impaired worshipers, Brentwood Baptist Deaf Church is among a small but growing number that offer services in sign language with oral translation. The church is part of Brentwood Baptist Church, which until three years ago used a sign language interpreter for its dozen deaf members. It hired Sims in 1995 to start a full-time ministry to the deaf. Now his church has about 70 members and seven Sunday school classes. Sims can relate to his deaf parishioners. His adoptive parents were deaf, and he grew up signing. Church deacon Michael Gournaris is deaf. For him, attending a church with a deaf congregation is more spiritual. "The deaf church has its own culture," he signs. "For a deaf person to worship in a culture that's not their church, it's harder." Churches for the deaf are not new. Woodmont Deaf Church, which Sims attended in his hometown of Houston, is one of the nation's oldest at 75. In Minneapolis, Bread of Life Evangelical Lutheran Church was built almost half a century ago and was designed to minimize visual distractions. The walls are stark white, with windows at the top to cut glare. A raised platform replaces a pulpit and includes a video screen. The National Assn. for the Deaf estimates that there are 1,000 or more mainly deaf congregations nationwide for 28 million deaf and hearing impaired Americans. Sims expects the number to grow in Tennessee and elsewhere as more denominations reach out to underserved populations. The National Council of Churches, which includes most major Protestant and Eastern Orthodox religions, has more than a dozen committees for underdeveloped ministries. "More denominations are now becoming aware of the diversity of people who have been excluded, mostly unintentionally, in the past," says Beth Lockard, head of the council's committee on deaf churches. "And that includes the deaf." She cites statistics indicating that 90% of the nation's deaf community is unchurched. "If these figures are accurate," she says, "it shows that deaf ministry has a lot of catching up to do." Lockard, who is deaf, is working toward ordination so she can lead the new Christ the King Deaf Lutheran Church in West Chester, Pa. Janet Clark of Nashville attends Sims' church. Before she lost her hearing to Legionnaire's disease, she and her husband attended a Presbyterian church in Nashville. As her hearing worsened, she moved, pew by pew, closer to the minister. Finally she gave up and tried Brentwood Baptist. "You can't worship in a hearing environment if you're deaf and using sign language," she says. "The difference is not just in the word itself. It's in a concept. You can spell out 'justify' or 'sanctify,' but that doesn't convey the concept. This is what the deaf had. They could spell it, but they didn't know what it means." To help his congregation understand, Sims uses posters, pictures, even masks. Props include three balloons that he blows up and deflates. His analogy: Hearts are like balloons. Without allowing God in, hearts cannot stay full. The audience nods and a few hands rise to sign "amen.'' Few worshipers notice girls chattering aloud, unchecked by their deaf mothers. Or the three teenagers in the back who "whisper" by signing low, where their hands can't be seen. Lamont Perry peers over his shoulder to eavesdrop. The 17-year-old Nashville resident has attended church on his own for three years, riding in a van that Sims sends to pick up deaf teenagers. His mother, who can hear, worships elsewhere. Perry said he would stay home if there were no deaf church. "I'd be bored trying to read the Bible myself," he says. Gournaris agrees. Without the church, he signs, he would be lost. He shakes his head. ''Lost," he repeats the sign. "The meaning of life would be lost." From an Associated Press story in the "Los Angeles Times" (Los Angeles, Calif.: June 20, 1998). THE LOVE LIGHT OF CHRIST By St. Columba (Sixth Century) 0 Lord, give us, we beseech Thee, In the Name of Jesus Christ Thy Son our Lord, That love which can never cease, That will kindle our lamps but not extinguish them, That they may burn in us and enlighten others. Do Thou O Christ, our dearest Savior, Thyself kindle our lamps, That they may evermore shine in Thy temple And receive unquenchable light from Thee That will enlighten our darkness And lessen the darkness of the world. From "2000 Years Since Bethlehem" (Upper Room Publications: 2000) JONI EARECKSON TADA: WALKING BY FAITH By Peg Carmack Short Editor’s Note: The following is the first part in a series of excerpts reprinted from a lengthy interview with Joni Eareckson Tada, one of the true “pioneers” in disability ministry, originally published in "Significant Living" magazine two years ago. PART ONE: FAITH AND MARRIAGE A moment can be as short as a heartbeat, but for some an isolated moment can change the course of a lifetime. That’s what happened to Joni Eareckson Tada on a seemingly ordinary summer day in 1967. Diving into shallow water in the Chesapeake Bay, Joni struck her head on a rock, breaking her neck and injuring her spinal cord. In that brief instant, life was irrevocably altered for this happy 17-year-old. It was the last day that she would ever move her hands or legs. Today…Joni has been in a wheelchair for almost four decades, and her story is well-known throughout the world. However, this story is not about a terrible tragedy but one of victory over adversity—and about a young woman who learned to walk again—not with her legs but by faith…. Q: Joni, some of our readers are just entering their 50s and they may reflect on this as a pretty big milestone. How did you feel about that 50th birthday? A: The year I turned 50 was the year I also began to experience pain and stiffness—I had always enjoyed pretty much a pain-free life as a quadriplegic, so this was an entirely new challenge. Q: I know that this has been an ongoing challenge for you and that you’ve recently had increased problems with your back. How are you doing now, and are there things you’ve learned about God that help sustain you when you hit a rough patch in the road? A: I am answering these questions from my bed, because I do have to rest my back occasionally, so the pain can be better managed. Yet God remains faithful, always giving grace. I wake up in the morning and know that there is a mission for me to accomplish—often it is as simple as encouraging someone else who is hurting. If I accomplish that, my day has been well-lived! Q: You always seem to look for life’s best. Do you have any thoughts or wisdom as you look to the second half of your life? A: The best wisdom I have found is Psalm 90:12, “Teach me to number my days, oh Lord, that I might apply my heart unto wisdom.” Now that I have crested middle age, I realize afresh how precious the gift of each day is. I want to invest each one into things, like people, that will last for eternity. Q: I know you have a wonderful husband who works alongside of you in your ministry. Could you tell us a little about him, how you met, and how long you’ve been married? A: We met at Grace Community Church. Ken taught U.S. Government and American History at John Burroughs High School for 32 years. We will be married 25 years in July, 2007. Q: A wonderful marriage is a relationship to be cherished and celebrated. What are some of the things that have been most helpful to you and Ken in building and sustaining a relationship? A: Ken and I have to deal with the conflicts that come our way—the wheelchair simply forces us to be open and honest with one another. God has used my wheelchair to cultivate within me a spirit of gratitude for all the many things Ken helps me with. I have learned that the best way I can support my husband is to pray for him, encourage him, and listen to him. We memorize scripture together and every night pray and read the Bible together as a couple. Q: Is there advice you might offer to a spouse who is helping a partner with a serious illness or disability? A: It’s important for the spouse not to be the sole caregiver of his or her disabled partner. Every caregiver needs a break; every caregiver needs help. The demands of a typical marriage are challenging enough without increasing the load with a disability. I try to encourage Ken to go fly fishing often, or spend an evening with his Bible study buddies, or go to USC games with his male friends. These are all ways I can show my support to him. (PART TWO IN NEXT ISSUE) Excerpted from “Walking By Faith,” "Significant Living" (Jan./Feb. 2007). IN REMEMBRANCE: REV. DR. SUSAN LEMLY By Jo D’Archangelis The first and only time I ever met Rev. Dr. Susan Lemly face-to-face was over 20 years ago when the then-pastor of our church, Ken Losh, and his wife Marie invited her to speak at a special Disability Awareness Sunday service. Because there was no accessibility to the chancel at the time, we had church-in-the-round, the congregation seated in chairs arranged in a circle on the sanctuary floor with Susan and her wheelchair and the altar table in the center. It was a truly memorable event for me to see one of the first people (not least of all one of the first women!) with a noticeable disability to be ordained in the California-Pacific Conference of the United Methodist Church leading a worship service. Not long after that, Susan attended a disability retreat in Colorado and then insisted that our Conference sponsor a similar retreat here in Southern California—and it did! I attended that first disability retreat in 1990 and from that experience I was inspired to put together a little disability newsletter called "Wings." (It wasn’t until recently, however, that I found out about Susan’s connection with the retreat and how, albeit indirectly, she had made such a significant impact on my life.) Susan was one of the first people to receive "Wings," and over the next several years we communicated with each other, mainly by e-mail. She submitted items from time to time for "Wings," and each Christmas she sent me her annual Christmas letter often accompanied by photos of herself and family members. Even after the increasingly debilitating effects of the multiple sclerosis forced her into a nursing home, items for "Wings" and the Christmas letters with the photos of the blonde, smiling woman continued to come year after year. In the nursing home Susan ministered to the needs of others and also nurtured her own mind and spirit. She strongly advocated for better care for other residents, including one of her own roommates, while at the same time recognizing how overworked and underpaid the nursing home staff was. She offered comfort to those whose families seemed to have forgotten them (she herself always expressed her gratitude for the care and attention she received from her family and friends). In 2002 she published a book entitled "Christian Discipleship And ME: Narcissism’s Impact Upon Our Understanding Of Christian Discipleship." Susan was known to be outspoken and even downright feisty, and she didn’t suffer fools of any sort gladly. She was particularly offended by how certain non-disabled people perceived those of us with disabilities. For example, she thought it a “peculiar kind of compliment” when people would tell her how much “better” they felt about themselves when they compared their situations with what she must be going through. She called them “insensitive in believing it was proper to use the sufferings of others as endorphins for themselves.” Of course she wanted to be of comfort to others, she said, but not because she was so much “worse off” than they were and their problems insignificant in comparison, but because she cared.* She also told of a man (“an associate minister no less,” she said) who came up to her one day and said that if he had MS, he’d kill himself. She didn’t let him know at the time how dumbfounded she was by his remark, but later she would write: “I wanted to tell him that I was a person of higher quality than he and therefore could joyfully continue to live in God's grace. So there, Mr...!”** Christmas 2008 was approaching and I had not yet received Susan’s annual Christmas letter. I wondered if something was wrong. A few days later, Marie Losh e-mailed me that Susan had died of pneumonia on December 11. A memorial service was held for her on Sunday, December 21, at St. Andrew’s By The Sea UMC in San Clemente, Calif., the church she had grown up in and had once served as pastor. Susan will be greatly missed. She showed us all by who she was and what she did that a life lived disabled can be a life lived with value, meaning, and—yes—even joy. As Susan would say, so there. *Wings (Fall 2000). **Wings (Winter 2000). A MEDITATION By Rev. Dr. Susan Lemly In John 21:18-19, Jesus says to Peter: “Very truly, I tell you, when you were younger, you used to fasten your own belt and go wherever you wished. But when you grow old, you will stretch out your hands, and someone else will fasten a belt around you and take you where you do not wish to go.” (He said this to indicate the kind of death by which he would glorify God.) After this he said to him, “Follow me.” [NRSV] This passage reminds me of the frustrations with which handicapped people must daily cope. The normal stresses of life become even greater problems in a crippled hand. When I was twenty years old, I was diagnosed with multiple sclerosis. I have reached my forty-third birthday and am grateful for the time to reflect on this life. Lessons have been severe and frustrations enormous, but through the example of the infinite patience of God, I’ve been able not only to accept this illness but ultimately to rejoice in it. Through Jesus Christ’s teachings we discover that he spoke and taught everyone without regard to physical condition. In God’s eyes we are each equally his children, called by him to love Jesus and imitate his ways. We are able to live with our frustrations and infirmities because we know that in the midst of them God has loved us. We are intimately known by him. (Editor’s Note: This was especially written for "Wings" and originally published in the Winter 1998 issue.) ON VULNERABILITY By Henri Nouwen Life is precious. Not because it is unchangeable like a diamond, but because it is vulnerable, like a little bird. To love life means to love its vulnerability, asking for care, attention, guidance, and support. Life and death are connected by vulnerability. The newborn child and the dying elder both remind us of the preciousness of our lives. Let's not forget the preciousness and vulnerability of life during the times we are powerful, successful, and popular. From "Bread For The Journey," Harper (San Francisco: 1997). WINGS 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": Jill Halley Rev. Ed Hoffman Bill Chain Bill & Ruth Bevil Alma Enyeart Lila Lanham WINGS: A non-official, non-profit quarterly newsletter for United Methodists with disabling conditions and all others interested in the issues of disability, accessibility, and the church 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 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 electronic versions of "Wings" are available for those who are vision-impaired and have computer “reading” devices; those who have difficulty handling paper and print publications; those who live outside the United States and its possessions; and/or those who just prefer computer viewing: (1.) A document version in partially formatted text without graphics available to those able to open attached files in Microsoft Word Document 2000 (this version seems to work best for those who use computer “reading” devices); and (2.) A full newsletter-formatted version with color graphics available to those able to open attached files in PDF format with Adobe Reader 6.0 software (Adobe Reader software is easily downloaded from Adobe.com without charge). E-mail Jo D’Archangelis at jodarlis@aol.com to request one, or both, of these versions. DONATIONS: "Wings" is an all-volunteer effort, but financial assistance is needed for printing and mailing costs. Most of our funding comes from reader donations. There are no subscription fees. If you think "Wings" is worth it, please make out a check or money order payable to the “Fallbrook United Methodist Church” (or “FUMC”), mark it “Wings Newsletter,” and mail it to: 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@sbcglobal.net